LISA TODAY

LISA TODAY...

2010-01-12T17:34:00.008-07:00

January 08, 2010

Northwest Medical Center

Oro Valley, Arizona

Lisa Anne Wintory died Friday January 8th, 2010 at the age of 43 from a brain injury caused by a cardiac arrest suffered in 2006 just two weeks after her son Michael was born. A career prosecutor, Lisa brought justice to violent sex offenders, murderers and, as chief of the multi-county grand jury for the Oklahoma Attorney General, to corrupt politicians and “ghost employees.” In 2003, Lisa joined Richard in Tucson; in 2004, Lisa joined Richard in marriage, and in 2006, parenthood when Michael Gene was born whose Godparents, Jack and Napua Davis have been a constant blessing in our lives. With the help of their friends the Vetranos, they built a beautiful home surrounded by mountains and had a wonderful time doing it.

Lisa continued her career of protecting the public as Assistant Chief Counsel to U.S, Immigration and Customs enforcement in the Department of Homeland Security. Lisa deported convicted sexual predators, drug traffickers and other foreign born criminals from our communities and neighborhoods. Lisa was a “strong advocate for the Department” who won special recognition for taking tough cases of significance to the Department. Her supervisor described Lisa as among, “our most talented and devoted employees” who had “performed with distinction”.

Born in Norman, Oklahoma to Jerry Bob and Carmen Goodspeed, Lisa spent part of her childhood in El Paso where she learned to love the desert southwest and attended the elite Radford school for girls, she later followed a famous alumna of Radford, Sandra Day O’Connor, to work at the United States Supreme Court. Firmly bit by the law bug, Lisa followed Justice O’ Connors’s encouragement and after graduating from the University of Oklahoma attended Oklahoma City University Law School where she earned her Juris doctor. Lisa enjoyed lifelong friendships from her sisters of delta gamma sorority to her colleagues in law enforcement and prosecution. This was shown by the outpouring of support for Lisa after she fell ill. Sick leave was donated by fellow federal prosecutors, Border Patrol agents, other federal law enforcement officers and employees from across America who rallied to her cause. This time allowed her to keep her home to which she was able to return after more than a year of hospitalization and attempts at rehabilitation. Lisa was also supported by doctors, nurses, aides and therapists who took Lisa to their hearts and gave her wonderful compassionate care. They also provided impromptu childcare for Lisa’s son, Michael who became a favorite in every unit Lisa was treated in. Lisa was with Michael whose first birthday, Christmas and baptism were all at St. Joe’s in phoenix with Lisa at his side. While Lisa was never able to regain the ability to communicate with us, we hope she was able to perceive how wonderful her boy is and how much she is loved. After all the treatment and therapy man can provide failed to return Lisa to her life, and after she had returned back to her home with her loving husband, son and her amazing caregiver Patrice, God finally granted the prayers to do what man could not. This meant He had to bring her to Him, which leaves us profoundly saddened despite the relief that Lisa no longer must suffer, that she has been healed and can fully experience God’s Love with her father , Richard’s mother, Beverly and her beloved sheltie, Maggie who all preceded her in death. Lisa has left behind her husband Richard and their son, Michael. Mother Carmen Goodspeed and her husband Karl Sinclair, her brother and sister –in-law-David and Suzanne Goodspeed, their children, her niece and nephew Rylee Goodspeed and Collin Power. Rex and Shaggy Young, Uncle and Aunt, and Stephen and Larissa, cousins

A Memorial Service will be held 3:00 p.m. Wednesday January 13, 2009 at Vistoso Funeral Home, 2285 E. Rancho Vistoso Blvd, Oro Valley. A Memorial Service will also be in Oklahoma City at 2:00 p.m. Friday January 22, 2010 at the Crossings Community Church. In lieu of flowers, donations to Michael’s Education Fund may be made to EdVest, c/o Wells Fargo (acct#0002727-2501065303), PO Box 55244, Boston, MA 02205. ("EdVest is for Education Investment.) Your gift to Michael must be mailed to Well Fargo; as your local Well Fargo Bank is unable to process it. I sincerely regret this inconvenience, but hope it will not deter your effort on behalf of Michael.

This will be my last posting to Lisa Today. Please accept my thanks for your interest, prayers, well wishes and concern for Lisa and her Family, not only here in Arizona but in Oklahoma as well.

Sincerely,

Michael Wintory

mlwintory@msn.com

Richard Wintory

wintoryok@hotmail.com

Sherry Wintory

sbwintory@msn.com

Lisa Today

2009-02-23T19:39:00.001-07:00

LISA TODAY - February 22, 2009

The latest on Lisa- a 3^rd Anniversary Update

Hey gang, Richard here. As we pass Michael’s third birthday, we approach the third anniversary of the catastrophic event that denied him in so many ways the blessing of being Lisa’s son.

We have much to be grateful for, compared to where we started that horrifying night three years ago. Lisa’s heart was stopped cold by a lethal genetic condition that had been the undiagnosed cause of her own father’s death when she was 12. The defect in her genetic code, known as Long QT type 3, had lain dormant and deadly while she competed in cheerleading, tennis and swimming, completed her education, traveled the world and had met and impressed all who knew her from U.S. Supreme Court Justices to the corrupt politicians and sex offenders she prosecuted and sent off to prison.

In truly a most cruel twist, it wasn’t until Lisa added one more title to the list of accomplishments she’d sought, mother, that this monster surfaced. Those who have followed these updates will remember all that came next- the first frantic hours and weeks, the initial thought that Lisa was stabilizing followed by the horror of the Stevens-Johnson reaction to one of her med's. The panicked helicopter flight to Phoenix, the slow recovery back from the abyss again. We were all so hopeful after Lisa was transferred to St. Joseph’s and placed under the care of the Barrow Neurological Center, giving her the best chance for the best recovery possible. However, despite initial promising progress the injury inflicted in those first few minutes continued to extend its reach slowly, steadily taking that opportunity away.

A recent round of tests, including another CT scan of Lisa’s brain show the devastation caused by the lack of oxygen after her heart stopped. I learned that less than 1% of those suffering out of hospital cardiac arrests survive more than a year. Knowing that she was already an odds beater, all of her family, friends, doctors, therapists and those who joined us through these pages prayed she might somehow have avoided the worst of what such an injury means. But that was not to be.

Lisa isn’t able to move, speak or communicate with us in any consistent, meaningful way. The brain injury caused spasticity which has, despite her receiving all the medical treatments available, continued to stiffen and cruelly twist her body. While she doesn’t appear to be able to see, Lisa does startle in response to sudden touch and loud sound. Her heartbeat and oxygen saturation, constantly monitored, also provide insight. Learning from these reactions, we’re able to know when she’s uncomfortable or otherwise distressed. Lisa is completely dependent on round the clock care provided by her caregiver, Patrice (during the day) and me (at night). Her many medications, nutrition and fluids are administered by a feeding tube, and while Lisa breathes on her own; she’s more comfortable with a little oxygen to assist her. A tracheotomy tube helps us keep her airway and lungs clear through regular suctioning.

Because of these limitations, we can’t be sure how much Lisa understands about all this. As I mentioned Lisa does show a “startle” reaction, but she doesn’t react to other things like hearing Michael or being spoken to by those she loves or on topics that would be of interest to her. However, I’ve continued to operate on the assumption (I won’t call it a hope) that Lisa can understand more than she can express. So while I don’t know she does perceive these things, because I don’t know she doesn’t we work off of the belief she does.

This means we keep Lisa in the center of our lives at home. She sleeps in her bedroom with her husband and son nearby, spends the day in her home, enjoying the breeze on the patio, listening to the wind chimes or books on tape her brother’s family gave her for Christmas and smelling the roses and jasmine she planted. Lisa joins me in the kitchen while I cook dinner and later when I read to Michael. We put the phone on speaker when she receives the regular calls from friends and family like nephew Collin and Godparents Jack and Napua.

Lisa’s condition makes bringing her with us when we leave home more difficult. The cost of a wheelchair van has been beyond our reach. Fortunately, our town of Oro Valley does provide a van that takes Lisa to doctor’s appointments or we’d be in real trouble. Still, this has limited our family outings or Lisa joining us when I take Michael to the playground, to church or to the store. I hope to be able to address this in the future.

Medically, despite her enormous injury Lisa is stable, safe and secure. The consistency and excellence of the care Patrice provides along with Lisa being out of a place filled with sick people has eliminated the terrifying cycle of infections and complications. The medical equipment used at home for Lisa ranges from as good to vastly superior to what she’d receive in any facility anywhere. The medical team available to Lisa has responded quickly when we have had problems (mostly involving the tubes that drain her stomach or provide nutrition). The bottom line is that I believe Lisa is in an environment where the complications folks in her condition are vulnerable to (skin breakdowns, pneumonia, etc) are being kept at bay.

The one constant source of joy and happiness during all of this has of course been our beautiful, cheerful, destructive son. He is helpful to a fault when furniture needs to moving Vetrano daddy needs help in the kitchen washing vegetables or out in the garden or yard Just as Lisa’s, genetic condition didn’t keep her from being a dedicated jock, neither has Michael’s. It’s hard to say at this age if he’s got Lisa’s ability or his father’s enthusiastic clumsiness. Still, he’s the joy of our family. Since our last update, Michael had his first experience carving a pumpkin and trick or treating on Halloween. He was quite unenthusiastic about the enterprise, even though I’d found a Thomas the tank engine costume. That is, until he figured out the goal was… CANDY! Then, he was a trick or treating machine!

Thanksgiving had Michael escorting Dad and Sherry to visit all my sisters’ families in Illinois. Sherry’s daughters, Dana and Chris along with their broods met in Chicago. Sherry and Dad hauled Michael to Galesburg where Laura and James got to love him up as well.

Christmas was wonderful despite my being stuck in a trial that went from the first of December through the middle of January. Godparents Jack and Napua came in for Christmas and what they’d hoped would be balmy weather (oops). Patrice’s daughter, Laura, on Christmas break from Arizona State came down to see her Mom. Just after Christmas, Laura and James escaped from the frozen tundra of Galesburg to the now-balmy Tucson (Jack and Napua having just left) so we had a great guest list for the holiday’s.

We continued our tradition of decorating the Christmas tree on Christmas Eve. This tradition was actually created due to my again running out of time to complete the task before everyone showed up. Oh well Dad, Jack and Michael had fun.

The presents, food and football were all pretty wonderful but the company was best of all. Michael certainly enjoyed his gifts but likes the act of opening them most. It’s only later that he figures out there are toys and books involved. The magic of a little snow on Christmas day was, unfortunately, lost on him leaving him confused about whether it was Christmas or Halloween fortunately Aunt Laura straightened him out.

Michael’s third birthday was another treat. Just as I’ve discovered the joys and mysteries of “Spongebob Squarepants,” “Thomas the Tank Engine” and “Wow Wow Wubzie”. I now have learned the magic of Chucky Cheese and our local variant, Peter Piper Pizza. Introduced to the secret by our friends Carl and Tracy Miller (anything that works with their 3 boys is good enough for me), I found a place combines everything necessary for a great birthday party: the back half is filled with rides and games. At the front are tables where parents can maintain surveillance with the door at their backs. In the middle of the place, there are counters where you order the pizza. But the real prize (for me) that makes this place not just endurable, but magic? You got it, ice-cold beer!

Michael’s development is amazing to me. He’s exceedingly polite, even while being completely unreasonable- “Hi, daddy. Can I please have some chocolate pudding?” while on the playground. Of course, as soon as you tell him we’ll have to do this later, he’ll think about it, and usually says, “ok, daddy, deal!” holding out his hand to confirm the arrangement with a “gimme five”.

I’ve been fighting a cold this weekend, and while I’m typing this, he’s brought me a steady stream of toys, snacks and drinks asking if I’m still sick and if I’m taking my medicine. Michael’s treatment of Lisa is the most wonderful of all. He’ll adjust her blanket if he thinks she’s cold. He understands when I tell him I’ll take care of him “after I take care of mommy”. When we come home at the end of the day he comes through the door shouting “hello, mommy!” and says goodbye each morning as we leave.

The rest of our little band is doing well also. Dad is still Michael’s best friend, ally and advocate (read spoiler). He picks Michael up each day from school and they knock around till I come to get him. Sherry’s taken on two new jobs and despite her perpetual struggle with desert allergies and the understandable loneliness of missing her kids and grandkids up north, is keeping us all in line.

In addition to providing outstanding care for Lisa, Patrice is continuing her online degree program recruiting our neighbor and regular rescuer Jim to get poked and prodded for her practical medical exercises (I’ve convinced her it would be a conflict of interest for me). She’s also studying Spanish, which is a handy thing to have in Tucson. So with these friends and family you can see that we’re doing just fine.

Our Best To You All!

Richard.

LISA TODAY - SUMMER 2008

2008-09-18T13:55:00.002-07:00

ORO VALLEY, ARIZONA

Hey gang, Richard here, what a great summer we’ve had in the house Lisa built! Last summer we’d just gotten Lisa home after a year and a half of moving from one hospital and one crisis to another. Getting our home remodeled, equipped, supplied and staffed for Lisa to be safe and comfortable was a huge undertaking that spilled over through last summer and fall.

But this year we’re chillin’ in the desert! Lisa’s medical care team has smoothly handled the inevitable challenges and kept her healthy and stable. Michael has kept me in stitches (and somehow kept himself out of them) and our friends and family have kept all of us going.

The summer has been filled with quiet mornings, busy days, restful nights and fun–filled weekends punctuated by visits from friends and family, exciting trips and (for Tucson) pretty mild temperatures.

Lisa insisted that despite our living in the desert we would have some grass in the backyard for kids and pets. Boy, was she right! Michael uses the grass to develop his horsemanship skills. I use it to protect my knees and hands as I play the role of horse. Bucking him off is an important part of learning, right?

Our backyard has definitely been a mini-oasis where Michael has become swimmer, gardener and engineer. With Lisa on our back porch under her ceiling fan, Michael plays shark attack (he’s the shark) in the pool, pulls weeds from the flower and vegetable beds (ok, he hasn’t quite figured out the difference between petunias and weeds) and organizes his trains and trucks in the excavation of his quarry (or what some might think of as a sandbox).

Local landscapers call this the “mini-oasis” concept that permits the area immediately around the back of the house to have grass, fruit trees and other water-hogging plants before the transition to traditional desert adapted vegetation on the other side of the backyard fence. I ran chicken wire along the bottom of the fence to keep the rabbits out that were eating the grass (which I welcomed) but carpeted the area with ….fertilizer (which on my hands and knees playing horse, I don’t).

The fence has worked pretty well with the rabbits, but hasn’t stopped the parade of other desert wildlife into our yard. Our wild summer visitors have included a bobcat, rattlesnake, tarantula, Gila monster and a herd of Javelina. We have a covey of Gambel’s quail Michael has watched grow up feeding at our seed block out the kitchen window along with the white winged doves. So far, I’ve been able to escort the predators out of the yard without harm to them or our brood. Michael has, of course, been an invaluable aid in these events. “Kitty, daddy, kitty!”

We’ve had other wild visitors this summer. Lisa and I are both career prosecutors, and I’ve been involved with National Dist-rict Attorney’s Association for many years. In fact, it was an NDAA board meeting here in Tucson a few years ago that sold me on the place. Well, NDAA’s summer conference was in Tucson this year. That brought many of Lisa’s friends from all over the country here and definitely called for a party. The weather was ordered up by the visitor’s bureau and the food came from my trusty Oklahoma Joe smoker and our favorite local Mexican restaurant. Old friends and new got to spend time with Lisa, meet Michael, my Dad and Sherry and our Tucson gang. I’m not sure if it was Lisa’s sangria recipe (which I followed to the letter) or the company, but it was a wonderful time.

We were particularly glad to have our long time friends from Oklahoma, Suzanne McLain Atwood and Trent Bagget here. Lisa had served on several important boards with them and so, having them sitting on Lisa’s porch together while our beautiful Pusch Ridge turned deep pink as the sun set, was special.

LISA’S CARE SYSTEM WORKS.

After tweaking and transitions over the last year, I’m confident we have Lisa in a safer, more comfortable place than any in the world. We had the chance to try it all out this summer and the system (along with Lisa) passed with flying colors. We have a doctor, nurse practitioner, and therapists all making house calls when needed for routine care. Lab technicians also come to our home for routine blood tests and x-rays. For trips to her physiatrist for spasticity treatments or tests or treatments at the hospital that can’t be done at home, good people at Coyote Run transport Lisa and Patrice along with her “go-bag” get her there and back safely without the drama and expense of ambulances.

When Lisa’s G-tube needed replacing this summer, her team of caregivers handled it in an afternoon at our nearby hospital and had her home before bedtime. Later in the summer Patrice and I noticed subtle changes in her condition that might have been overlooked without the consistency of care we can provide. When the symptoms continued, Lisa’s medical team ordered up blood work and then more tests by our old friends at Oro Valley NW Medical Center. A complete set of tests using all the high-tech equipment there identified the problem (her G-tube had moved) which was immediately corrected and resolved the symptoms right away.

Lisa was tested, treated and cared for by many of the same folks who saved her life after the cardiac arrest two years ago. They were amazed at how well Lisa has done (if you remember, she was flown out by helicopter with a life-threatening reaction to a medicine that was blistering her skin and linings of her lungs). More delight came when they saw Michael. Because, when they first saw him he was wrapped like a burrito to be with his mom when they’d help smuggle him in to visit, now, he’s 2 and a half, and ready to “help” them run their hospital.

Bottom line: Lisa is in a home modified and equipped with the best bed, lift system and other stuff available anywhere in the world. She is cared for by folks who know her and love her with the skills, training and facilities to handle the kinds of complications (Michael with Cousins Will & Catharine)

her brain injury make inevitable while keeping her in her home with her family. While I’m proud to be one of these caregivers each night (my shift) I know it’s more than just one person who makes Lisa’s safety and comfort possible and I’m grateful to them all.

MY MOM

This is Lisa’s update, so I don’t try and do too much of my stuff here, which is pretty boring anyway. But my writing of this update was interrupted by the passing of the person who got Lisa and I together- my mom, Beverly Adele Wintory. You can read her memoriam at http://obituaries.galesburg.com/Link.asp?I=LS000117543209X

I wanted to share with you that story since most folks wonder what the heck Lisa was thinking when she married me anyway. It’s your basic “boy gets girl, boy loses girl because he’s an idiot”, when my mother comes into the picture.

After my mom’s stroke and move back to Illinois, she came to visit me in Oklahoma each summer. It was during one of those visits after "boy" had been repeatedly told he’d lost the girl (by the girl) we begin. My mom was again reminding me how much she believed Lisa and I should be together and asking if I’d called her. After the usual “she’s already told me to leave her alone” “you should call her” exchange, I picked up the phone just to shut my mom up by letting her hear Lisa tell me to get lost.

I dial the number. It rings. Lisa answers. I say, “I know I’m an idiot. I know I’m a bigger idiot for calling you again after you’ve told me to get lost repeatedly. But my mother is making me call you to….” Lisa interrupts and asks “Your mom! How is she?” One topic led to another and to dinner for the 3 of us and the rest, as they say, is history.

Lisa and I were really glad to have mom make what turned out to be her last visit to Tucson while our home was being built. We got to show her all the sights and had a great time together. Lisa’s love for her was enough to give me the chance that led to our marriage, home and Michael. We’ll miss mom’s weekly calls to visit with us and Michael will miss yelling “HI, GRANDMA!” into the phone. Mom’s real understanding of our situation was always a source of support and strength for me and comfort, I believe, for Lisa.

Richard...

Please direct your questions or comments to: mlwintory@msn.com

LISA TODAY – Spring 2008

2008-05-21T15:41:00.007-07:00

Oro Valley, Arizona

Hey everyone, Richard here...

Lisa and I are having a calm, quiet weekend. Poppy and Mimi (my dad, Michael and Sherry) extended a business trip to Anaheim, California and are treating their grandson to Disneyland.

The trip gives me a chance to catch up you all up on how well things have gone this spring. Lisa is continuing the stable, comfortable, safe condition she’s maintained since getting home. Lisa has been unable to regain the ability to communicate that we’d hoped for, but we have gotten pretty good at reading her reactions to keep her stable, safe and comfortable.

Lisa’s Tucson physiatrist (the Neuro-Rehab specialist) has continued the work of Dr. Kwasnica in adjusting the different medicines to control Lisa’s spasticity. The results in reducing the stiffness in Lisa’s muscles have been impressive. We are able to move Lisa’s limbs much more easily and she can sit in her chairs without sliding out from her being so stiff. This has made it easy for her to sit in the kitchen while I’m fixing dinner with the help of our two year old Sous Chef.

Lisa continues to reap the benefits of her new bed, the Hill-Rom Total Care Sport bed. It rotates her from side to help keep her lungs clear and skin healthy. It helps turn her on her side and even turns itself (kind of like “transformers”) into a great big well-padded chair so she can sit up and enjoy the incredible views out of our bedroom patio doors when it gets too warm to sit outside. We’re still fighting with the insurance company to pay for it, but there’s no question it has been worth the cost. Lisa’s not had anymore skin or lung problems since she’s gotten this amazing piece of equipment.

Lisa’s daily routine goes something like this: we wake up listening to National Public Radio news and Michael’s quiet breathing. After her morning meds and treatments Lisa finishes the tube feedings that provide her the nutrition that keeps her healthy and strong. We (Patrice and I) use the ceiling lift to transfer her safely and smoothly to her shower chair and give Lisa a chance to sit on our patio to enjoy the morning songbirds and smell of the star jasmine we planted on both sides of our master bedroom patio.

Next, Lisa gets her shower, with the modification we made to our house; she can be easily rolled into our super-duper shower with its 7 spray heads and get a real spa experience. Later Lisa gets range of motion therapy and a chance to rest for a bit. After her nap and afternoon meds and treatment it’s back into the ceiling lift and a trip downstairs into her regular wheelchair.

If Lisa has an outside appointment the great folks at Oro Valley’s Coyote Run (public door-to-door wheelchair transportation) will pick Lisa and her caregiver Patrice up and take them to her doctor’s appointment or even shopping and back! Patrice always brings a “go-bag” to make certain Lisa has necessary equipment and medicines should a need arise. Getting out and about during the week is also fun! For most of her needs though, folks come to Lisa and she is able to meet them downstairs in her home.

When there are no visitors or appointments, Lisa will sit with Patrice studying for one of her online college courses or they’ll watch “chick flicks” which, by-the-way, I can’t sit through. Once I hit the door after picking up our 2-year old Godzilla, Lisa comes into the kitchen with me while I make dinner, usually with Michael helps push his mom’s wheelchair. He wants to help and I let him.

Later we’ll watch a little sponge bob square pants (if you don’t know, don’t ask) or Michael will yell, “book!” prompting a hard look from me, followed by him lighting up a heart-melting smile and whispering “please?”. At the moment, we’re working through an illustrated “treasure island.” by this time Lisa’s back upstairs with us and we’re all winding down getting ready for a restful night and the next day’s adventure.

Springtime has turned into a wonderful season for us here in the desert. The weather is truly wonderful and the blooming plants, trees and cactus make you wonder if someone dropped LSD into your coffee with all the strange shapes and colors.

Spring started with Michael’s birthday in February on the 10th followed by Easter with beautiful church services and Michael’s first Easter egg hunt. We celebrated Lisa’s birthday in April and mine a couple of weeks later (I’m still so much older than she is!) in May. The highlight of mother’s day for us was Michael’s handmade (literally) gift for mommy.

What makes these times so special are the members of our family and friends who’ve stood by and supported us through thick and thin. Lisa’s beloved nephew Collin, who used his spring break to travel to a troubled and impoverished town in Mexico to serve others and then called Lisa to share the story with her, Jim and Ann, our guardian angel neighbors, Jack and Napua, Michael’s godparents who are always calling in with love and support, and Poppy and Mimi, without whom we couldn’t make it a week helping make sure Lisa’s son is surrounded by folks who love and protect him and his mother.

We still have challenges ahead; I’m hoping to get Lisa back into hyperbaric therapy and eventually a wheelchair van to make weekend outings possible for us as a family. Lisa’s condition is unchanged. I know for some that’s disappointing, and in a way, of course, it is. But from where we were just a year ago, (just take a look at those updates) we are in such a much better place, that I truly feel we are blessed. So we’re going to keep plugging away, making the most of each day God has given us, together. r (Richard Wintory - 20 May 2008)

For more information or comment please email:

Michael
mlwintory@msn.com

Lisa Today - January 16, 2008

2008-01-16T15:46:00.000-07:00

The latest on Lisa, Christmas 2007
Home sweet home in Oro Valley Arizona

Ours is a home I wouldn’t exactly call “sweet” and certainly it’s not peaceful with a little, lovable monster like Michael doing his best impression of Godzilla destroying Tokyo on a daily basis. Still we have all the personnel, medicine, equipment and supplies you’d expect in a state of the art long term acute care facility. Lisa has an experienced, compassionate live-in, full-time caregiver, Patrice (certified as personal, supervisory and directed caregiver) to provide her medicines, tube feeding and therapies, her daily shower and other necessary care from 7 in the morning until after 8 at night. When Lisa needs to see a doctor, her primary care doc, board certified in family medicine makes a house call. Routine tests, x-rays are all done at home and delivered to the labs and specialists for interpretation with the results reported back to Lisa’s doctor and family. When Lisa’s baclofin pump needs re-filling that too, is done at home by visiting nurses.

Of course, some visits to Dr’s offices (like for her board-certified neurologist) must be made and when the need arises, Coyote Run, a local, shuttle service provided for disabled residents of Oro Valley, is available for scheduled appointments during the workweek. On those days, Lisa and her caregiver Patrice load up together with a “go-bag” of essential supplies and equipment. Even though the service isn’t available for weekends, urgent medical matters or for trips to church or other outings for Lisa, it has been a real blessing.

I have found a local business that rents wheelchair vans from their sales inventory and that let us take Lisa to Dad and Sherry’s home for Thanksgiving, to church, one of Tucson’s lovely parks, and shopping, all with Michael’s indispensable help! As beautiful as our home is, I really believe it’s important that we include Lisa in these “non-essential” activities with her family, so it’s something I’m going to continue to work on.

Dad and Sherry have continued their support for our ability to care for Lisa at home by helping with Michael. Dad (aka Poppy) picks Michael up in the morning, letting me get ready to go to work. Our little bundle of boy gets bathed, dressed and dragged to his Montessori school where he’s made truly amazing progress in “practical living skills” as you can see from the pictures, Michael helps with me in the kitchen cooking, he’s all about “clean-up” time i.e. picking up what he’s gotten out and feeding himself at his little table. His vocabulary increase in size and quality everyday, and is only slightly populated by variations of “no”

So with all this in place, we entered the holiday season. Here’s a recap of how well it went, with Dad adding pictures of it all here and in the attached photo show:

A family Thanksgiving in Mimi and Poppy’s new home in the desert
My stepsister, Dana, her husband Kevin and their two wonderful children Andrew and Allison came from Minneapolis for Thanksgiving. My sister Debra also flew from slightly warmer Sarasota, Florida. Sherry was overjoyed to have her out of state family join us for their first holiday in her new home in the desert. We were all rewarded with wonderful meals the evening before and the afternoon of Thanksgiving. In between feasting, Sherry (aka Mimi) led the kids in board games, arts and crafts projects and general fun. Michael and his cousins had a blast together as you can see from the pictures Dad has attached in the accompanying photoshow. I’ve offered Allison a job as Michael’s babysitter if we can just work out the drive time to Minneapolis. Dana and Kevin are a couple Lisa and I really bonded with when we were together in Illinois the Thanksgiving before Michael was born. It was good to get to visit, drink good wine and plan future adventures together.

No one has worked harder or given up more to help us with Lisa than Sherry, so having her “nested” and having a great time with her kids and grandkids was really special. Now we just need to get my other step sister Chris and her brood out here!

“Over the river and through the woods….” A trip to see Grandma!
Commitments that had been made earlier in the fall that would have tied me to Tucson throughout December fell through leaving me with an opportunity for Michael to see his grandma in Illinois. My mom, you’ll recall, is a stroke and cancer survivor and is unable to travel. She’s recently moved to a really nice facility in Galesburg, just a few minutes from where my sister Laura and her husband James live. So, with Patrice, Sherry and Dad looking after Lisa, Michael and I loaded up for the long flights and headed out.

Flying is no big deal to our son. Escalators, though, are an entirely different matter. He got mad in Dallas when 3 round trips up and down weren’t enough and I had to drag him off for the connecting flight. Our flight arrived late and even though I had a rental car, my sister Debra (again in from Sarasota) drove to the airport to watch Michael while I installed the car seat in the frozen darkness. This is the stuff I wouldn’t have thought of asking for help with as a new dad. Our good friend Tracy Miller pointed out that while she has husband Carl to corral her twins in such situations I’d need help that Deb was glad to offer.

Our visit was wonderful. Grandma’s joy was unmatched by anything I’ve seen. Mom’s had some significant setbacks recently and feared she’d not get another chance to see her family. As it was, we darn near had a reunion! The other residents of the care facility were quite taken with our tow-headed wonder. We were all able to share meals and good times there with mom before heading back to Laura and James beautiful home for the nights of our visit.

One morning of our visit we went to Laura’s job. Laura is the women’s ministry director of a rapidly growing Baptist church. She and James recently completed a church-sponsored trip to Africa to help women in Nigeria fight the AIDS epidemic. While Lisa and I attend Mass and have decided to raise Michael Catholic I, of course, welcomed the Tucson-based Baptist minister Laura had come and pray for Lisa in those first terrifying days and feel great pride and respect for Laura and her church’s efforts.

Michael got his first, hilarious exposure to snow (what do you expect from a little desert rat?). All too soon, and yet with a huge desire to get home, Michael and I began our return trip. All was well till the looooooong flight from Chicago to Tucson. And while 4 hours is long by any measure, a screaming, inconsolable lap child makes it even tougher. I kept wondering when the air marshals were going to sack us up or the captain was going to put us down in Omaha! But once we were in our old reliable Toyota (134,000 miles and going strong) he was asleep before we left the parking lot.

Christmas with a visit from Santa, and Michael’s Godparents
With Christmas upon us, we began preparations for a holiday visit from Michael's godparents, Jack and Napua Davis. In addition to a legendary career in law enforcement, Jack is an amazing cook, and with Napua's Hawaiian cooking heritage, cooking for them is pretty intimidating. Of course, all that disappears with their great company and a little (ok, a lot of) wine.

We renewed a Christmas tradition of decorating the tree on Christmas Eve. Ok, ok, the “renewal” was prompted by me not getting it done sooner. But Dad, Michael and I found a beautiful, fresh, ginourmous tree, and with everyone helping while I finished fixing dinner, the tree was decorated faster than old St. Nick’s “Ho, Ho, Ho!”

The last time we’d had these lights and decorations out was the Christmas before Michael was born. This was the first one Lisa and I’d had in our home, our first as a married couple, and Lisa had taken great care when everything was put away that year to label and mark everything so we’d know what went where for future years. So it very much felt like Lisa was helping me in the yard string luminarias and other lights when I had her handwritten notes from that very happy time telling me what to do.

On Christmas Eve, Lisa’s notes added her “two cents” as she sat with us in her chair while we completed decorating the house. Even though Lisa isn’t able to be responsive to us we all prayed that she felt the peace and joy we did at being together in her home.

Christmas morning came, and since Michael at 20 months still doesn’t “get it” the grown-ups took their sweet time at getting up and over here. We had breakfast, coffee and Patrice got Lisa gussied up for the occasion. Michael really scored big, and while last Christmas he was interested only in tearing the paper, this year, he figured out the contents were the real fun! From his family and friends he got thoughtful and thought-challenging toys, videos, books and clothes heavily represented by Thomas the tank engine and friends, along with many other much welcomed gifts, including gingerbread man cookies from his grandmother Carmen from Oklahoma.

I’d struggled with gifts between Lisa and me but it all became clear the way these things do. We got a Christmas call from Lisa’s nephew Collin and we learned he’s off on a mission to Mexico during his spring break with his church. Imagine a kid in this “selfish” age in which we live; excited about giving up his vacation to help others in real need. It gives you some idea why Lisa loves this young man so much. When I learned we could help with the cost of the trip, my Christmas gift problem was solved!

Christmas dinner was truly special if not exactly on time. The world’s best neighbors, Jim and Ann Peterson who were putting Jack and Napua up, joined us along with our friend Brad Holland. Brad had provided Lisa and I with our first place to stay here in Tucson and many good times thereafter despite being a native Nebraskan. Lisa and all the ladies looked beautiful and Michael was a real Christmas angel.

Fun and family for the New Year
More great meals and good times were enjoyed in the days that followed. While I worked Napua and Jack said “our turn!” and put my cooking to shame with all different Asian/island specialties Napua has at her command together with the down-home Oklahoma fare she and Jack pair up on. Lisa joined them in the kitchen as she does me. During the day, Jim and Ann took Jack and Napua to the San Xavier mission. They saw and photographed many gains in the restoration the 500 year old mission since Lisa and I’d taken my mom there during her last visit.

Dad, Jack, Jim and my partner at the county attorney’s office, Chris Ward, hit the links, with them hitting back, to hear them tell the tale. Dad proved that Wintory guys make up in enthusiasm what we lack in skill and a good time was had by all. Afterwards, Jim and Ann hosted everyone to a lovely dinner at a local hotspot that was more than Michael could handle so he and I stayed at home with his mom and Thomas the tank engine, my new idea of a good time!

Napua and Jack’s food festival peaked on New Year’s Day with traditional black eyed peas,(for good luck) fried chicken, greens and thin, crisp (no, not cakey, Jack) cornbread. YUM! The day was warm and beautiful and while Napua and Jack were doing their thing I was smoking pork shoulders, beans and a turkey for tailgating the following day.

Tailgating? Oh yeah, there was one disaster this holiday season. The University of Oklahoma’s performance at the fiesta bowl against West Virginia. Despite the abject humiliation of the game, Jack, Jim, Chris and I had a helluva good time. Michael, Dad and Sherry hung out while Patrice looked after Lisa for the day. We left early, got a great tailgating spot near the porta potties (hey, with all that beer, whatyaexpect?) set up our tables, and chairs, popped open the cooler and few cold ones, and when hunger struck, tore into the bbq which was- according to informed sources- deeelicious. The day was warm, clear and the crowds were friendly, all perfect. Until… oh well, that’s what makes the college game so great. It was all still great fun.

Sadly, the next day, Jack and Napua had to begin their trip home and our holiday season came to an end with tears and hugs and blueberry pancakes.

A blessed time….
It’s funny how it all works. We’re so much worse off than where I’d thought we’d be two years ago when Lisa, happy and near-term with this incredible life growing in her, and I decorated the house together. But we are so much better off than where I feared a year ago when our lives, like these Christmas lights, remained boxed up. Last Thanksgiving’s near-death traffic accident while I was driving up to Phoenix; Christmas with Michael and me on a pull-out bed in Lisa’s hospital room, opening presents by the light of her heart-monitor and the fight over Lisa’s getting hyperbaric treatment all come to mind. Even in those times though, we were lifted up by the kindness, prayers and unflinching, untiring support of our friends and family here, at St. Joe’s and across the country.

The only lesson I draw from all this is that God’s grace gives us reason for humble gratitude during times of despair and joy.

The New Year will have many challenges and it’s not waiting to present them. We’ve been cooling our heels since August for blue cross to tell us if they’ll pay for the hospital bed Lisa’s doctors believe she needs. I thought perhaps they were waiting for the new year when we had to start our deductible again. Well, they were waiting, but that apparently wasn’t their thought and yesterday I got the denial letter. It says, that because Lisa doesn’t yet have bedsores we don’t need a bed her doctor says we need to prevent them. Even sillier, they said that because the mattress she has was ordered by her doctors at Select over half a year ago, the order of her doctor now doesn’t count!

The generosity of so many of you has given us enough to get one of the refurbished beds. These beds cost as much as a wheelchair van, so I’d been holding off till blue cross decided hoping I could do both. As it stands, I’ll get on these guys and we’ll figure out how to get-r-done!

I’m finishing this update, like most of my dinners, just a little late, on Sunday January 6th 2008. It’s a rainy day here in the desert, so taking down the outdoor Christmas lights is waiting a bit longer. Michael has me playing catch with him inside the house while Lisa’s getting her shower. When it dries up I’ll store the lights the way we did that last happy time and I’ll save Lisa’s notes on the strings of lights to help me again next Christmas.

Richard Wintory

wintoryok@hotmail

Michael Wintory

wintory@msn.com

,

Lisa Today 2008

2008-01-16T14:15:00.001-07:00

Lisa Today -2007, October 28

2007-11-02T10:39:00.001-07:00

Hey gang, Richard here, from Lisa central. It's a quiet Sunday afternoon, of the type we haven't had in, well, never, since Michael was born 20 months and four weeks ago. That was two weeks before that terrible night when a genetic killer lying silent and deadly and awakened by Michael's birth tried everything it could to rob Lisa of her chance to enjoy the life she worked so hard to have.

By fighting back so hard, Lisa gave us all the chance to see how the very worst can bring out the very best in so many. By fighting and winning, Lisa gave doctors the chance to solve the mystery of her father's terribly premature death when Lisa was just twelve. The answer to what took her dad and almost claimed her, a genetic condition call "type 3 long qt syndrome", has come in time to identify its presence in our son and to test her brother and niece. Michael now gets medicine twice daily to help keep chemicals in balance that conduct the electrical current that keeps our hearts beating. Fortunately, the stuff tastes good enough he insists on getting it.

We brought Lisa home in June. Wow. It's hard to believe it's been 4 months already. We've had so much going on getting her settled in, modifications to the house, managing the inevitable crisis that I haven't had time to turn around. Dad has continued to do his amazing job of keeping everyone updated. Folks have been so patient for more details so let me hit the highlights.

When I last kicked in here, we were still in at select specialty hospital, the long term acute care facility located in phoenix at St. Josephs hospital. Lisa was stable enough to be moved and that was what our insurance company blue cross had been demanding since the end of February.

But while Lisa was ready to leave select, to bring her home, we needed key modifications for our home to be safe and comfortable. We also needed someone special to move into our home and help care for Lisa during the day while I worked. I posted on websites and publications in the field from all over the country and inquiries literally all over the world.

We continually were defeated by the math. Folks with the experience were either from other countries and no way to get here quickly, or were here and far more expensive than we could afford. Folks from here we could afford were really nice people but lacked the experience to do all the things Lisa needs. Home health care agencies were prohibitively expensive. We earn too much to qualify for assistance and not enough to afford the available applicants.

While I was chasing my tail to find a caregiver and getting the financing and other logistics for the home modifications, Blue Cross decided to make their point and stopped covering Lisa's stay at select. The retail cost for Lisa's care was running between 60 and 90 thousand dollars a month. A bit more than my salary as a deputy Pima county attorney could handle. Pressure was being applied to move lisa out of select to a lower level of care, but none were available that could meet lisa's needs and would take us in light of the lack of coverage. But with each new facility, a new discharge date would be announced only to be postponed because of these issues. The stress was unbelievable.

Just when things were starting to get desperate, we met Patrice. After 15 years as a certified nurse's assistant, she was back in school and in a period of transition in her life. It was a perfect match. Patrice went to phoenix, stayed with Lisa at select, worked with the staff that had become extremely protective of her, (they had vetoed a previous candidate) and was universally approved. We had our caregiver.

While Lisa was stable enough to leave select, she was by no means in the clear. Her cardiac arrest-caused brain injury had left Lisa's body stiff with spasticity and a host of interconnected complications. Lisa was still fighting to regain weight from a loss caused while tube feedings were reduced during hyperbaric treatments to help her spasticity. The weight loss slowed the healing of a couple of wounds caused by casts and splints used to try and control muscle contractures from the spasticity. Gaining the weight back in turn was slowed by an infection in her intestinal tract that was stubborn and drug resistant. Increasing the tube feedings caused regular bouts of infections in her lungs cause by aspiration of her tube feedings. These infections had to be treated with anti-biotics that wreaked havoc with the healthy bacteria in her gut, complicating that infection.

Obviously, the way to break the cycle was to get Lisa out of the hospital and back home. But still, leaving was hard in many ways. While the folks in the business office at select were taking care of, well business, the others were taking care of Lisa. Our nurses and cna's were simply amazing. Lisa was cared for by a pretty regular crew day and night who came to know and love her as we do them. Lisa's doc's had her condition down so well, they were treating complications before they could get out of hand. Connie, Deb, Maureen and Marty, Lisa's therapists never gave up on Lisa and have continued to help us even after we came home.

But more than the medical help, it was hard to leave our spiritual family. Every week, our little family took the elevator down to the chapel to attend church together. Michael's baptism, first birthday and first public addresses (!) all happened in the St. Joe's Chapel. Father Milt provided comfort, strength and support; he and Father Bill never batted an eye on the amazingly few occasions when Michael insisted on being heard. Our brothers and sisters in the parish never failed to offer prayers and kind words to Lisa, praise to Michael and support to me.

While we are so glad to be home we miss the people in phoenix who made our fight possible- none more so than our friends who've come to be known as "lisa's rangers". Warriors and dragon-slaying prosecutors all, they were the picture of selfless kindness in caring for Lisa, Michael and me.

I'm often told I have no idea how many people pray for us, and I know that's true. Just when I was wondering how I was going to get all modifications done to our home due to cost overruns, a call came from old friends in law enforcement from Oklahoma. With the blessing and support of our friend and former boss, Oklahoma attorney general Drew Edmondson, training for law enforcement officers was held with the proceeds going to Lisa's fund. Prosecutors from all over America sent help after an outreach by my colleagues in the national district attorney's association. More unbelievably generous help came from my wonderful step-mother's family, as well as my dad's family. Just as earlier help from Lisa's colleagues in federal service got us the leave time we needed to keep our roof over our heads, this help made it a home for Lisa again.

With a caregiver and home modifications in place we brought Lisa home- and immediately had trouble. Her feeding tube, replaced right before her discharge, clogged. One of the really great doc's we've found since coming home told me that stuff like this was going to happen for the first month or so while we got settled in and that was really true.

We had trouble with equipment, supplies and vendors. But somehow after a month or so, stuff started coming together. Okay, it's actually been longer than that but today:

Lisa's gotten an additional tube dedicated to feeding. It's lower in her intestinal tract, isn't clogging and allows her to get a volume of nutrition that has allowed her to regain her weight without overfilling her stomach. Since it's been in we've had no aspiration and no more lung infections.

With the extra nutrition and great care from Patrice, her wounds from the splints and cast have healed beautifully.

The stubborn infection in her intestinal tract is gone, gone, gone.

We've gone longer without any major problems than at anytime since this started. I attribute this to the consistency of care Lisa's getting (it's just Patrice during the day, me at night and we alternate weekends), the lack of commotion and the resultant rest, and the lack of opportunistic bugs and viruses.

Patrice has most all the vendors whipped into shape. Supplies and medicines are delivered or picked up on a schedule that keeps us in stock. We have just about everything we had in the hospital (with the significant exception of a hospital- quality bed and mattress- but we're working on that) right in our home.

Lisa's doctor makes house calls as does his nurse practitioner. Lisa can get x-rays and labs done here at home. Her speech and other therapists also see her here at home. While her baclofin pump and other services require office visits, we have a public transportation van that takes Lisa and Patrice to those during the week.

Lisa's routine and the modifications made possible by those family members and friends mentioned earlier, gives her time for rest, a shower in her own shower, time sitting on our master bedroom patio, (see picture) joining us downstairs while I cook dinner and for a movie or reading to Michael- in short to be fully part of her family's life in our home.

The insurance coverage for Lisa's stay was the "death star" looming over our existence, at least our financial existence. I'd sent in an appeal that blue cross insisted be called an "application to reconsider denial". I spent some time trying to make as strong a case as I could. I simply couldn't believe after everything blue cross has done to give Lisa the best chance for the best recovery possible they'd leave us in the lurch. Well their answer came after we got Lisa home in June. I was in the middle of a 6 week murder and racketeering trial and to glance at the 12 page letter, you'd think we were sunk. But a more careful reading revealed that while blue cross didn't believe they had to pay, they were going to make an exception for Lisa- whew!

So, instead of another round of appeals and/or a lawsuit or worse, bankruptcy, we have half a million dollars in medical bills run up between February and June covered! More recently, blue cross has agreed to consider whether they'll cover the kind of bed and mattress Lisa had in the hospital rather than the dinky home health care bed she now has. Normally, we'd have to buy the bed hoping they'd pay, but their kind of pricey so, knowing up front will be really helpful. We hope to hear from them this week.

Our local church with Father Liam has welcomed us back with open arms. Our public shuttle service doesn't go on the weekends so Lisa hasn't been able to go yet, but we're working on that as well. Michael's Godparent's Jack and Napua Davis are keeping close tabs on Michael's attendance, and I'm determined not to disappoint them.

As you can tell from dad's updates, he and Sherry are doing great. Sherry has started working again as a nurse practioner at a local clinic. Dad and his new best friend, his grandson, have a grand old time everyday; I really can't tell who enjoys it more between them. They are a real blessing to Lisa, Michael and for sure, me.

Back in January I warned the folks wanting to discharge Lisa ASAP, that me getting everything done I had to would be complicated by the busiest trial schedule I'd had in years. This had started in June of '06 when I'd come back from trying a pretty nasty case in Oklahoma to start a series of trials in a 40 defendant racketeering case. All the cases I'd been continuing after Lisa got sick were coming up for trial with no way to avoid or delay longer. These were big bad cases with big bad guys and I needed to – as my old boss Bob Macy would say- cowboy up.

Well, it was about as bad as I thought it would be, but I had tons of help from the wonderful staff and the cops I work with, a little luck and pretty good jurors. All the bad guys in all those cases got convicted, in fact it went so well, my boss nominated me for Arizona prosecutor of the year, and despite some really terrific nominees from other jurisdictions, I got the nod! Sherry brought Michael to the award ceremony and one of my co-workers thought it'd be nice to give him a piece of cake. With frosting. There are some pictures of the smearing, but that will be for another time…

One of the best parts of having Lisa home is that instead of loading up and hauling Michael back and forth to phoenix each weekend, we're able to do normal family stuff. I've got the yard back in shape, with flowers in containers on Lisa's patio, and fall vegetables planted. I am so excited to finally get to plant Lyle and Susie's pole beans. They are up and climbing! Here in the desert this is a great time to grow with days warm and nights cool.

Ok gang, that's a not very brief run-down of how we're doing. Lisa is home with her family and we are living our lives, thanks to the countless prayers and help from so many of you.

Richard Wintory

C/O mlwintory@msn.com

Lisa Today – 2007 September 18

2007-09-19T10:24:00.000-07:00

Oro Valley, AZ

Lisa is in her newly remodeled home that was tailored to accommodate her. A special ceiling track and lift was installed which enables Patrice, Lisa’s primary care giver, to freely move Lisa about the residence. She can even be moved outside and onto the patio, and in the late afternoons she is positioned to see the beautiful Catalina Mountains at sunset. The mountains are truly a sight to behold with their great variety of color painted with the sun splashes on the mountain surfaces. Lately beautiful cumulous clouds have capped the mountain creating even greater splendor, and as Michael would say, "mmmm good." She is also moved outside on to the lower-level patio so hopefully she can see and hear Michael racing around barefoot on the beautiful green lawn and his supervised splashing in the swimming pool. Lisa is also positioned in the kitchen area to be near Richard and Michael during their evening meal preparation. What I want to convey to you is that Richard and Patrice include Lisa into the daily activities that occur in the household. I used the word hopefully above because we’re not sure that Lisa can visually or audibly interpret the sights and sounds about her.
Let me take you through the process of moving Lisa from the family room--up the stairs into her bedroom. In the first photograph (above), Patrice is shown connecting the lift to the cradle in preparation of raising Lisa from her wheelchair. In the second and third photographs (right), Lisa has cleared the wheelchair and is well on her way to the stairway approach. Notice the cable and small box Patrice is holding, it’s the control she uses to pilot Lisa’s progress: up or down and forward or backward. The sling glides smoothly and silently in all directions. In the fourth photograph (left), you can see Lisa as she approaches the bedroom doorway. Also the picture shows Patrice is right there to assure a smooth comfortable trip. Also you should know that Lisa’s heart rate, respiration and oxygen level is monitored whenever she is "out and about."
The fifth photograph (right and below the 4th photo) shows that Lisa’s destination is in sight and you can see that her freshly made hospital bed is waiting for her.

Lisa was recently visited by Jack and Napua Davis of Midwest City, OK. Jack and Napua are Michael’s God Parents, and she was also visited by her brother David, and her mother and step-father from Norman, OK.

The final picture is of Michael at 19 months (February 10th). My observation is that he is a happy child as evidenced by the fact that he waves at high-in-sky airplanes, and cars that pass his way. He tells the grocery store cashier goodbye as we leave her checkout station and blows her a kiss. He loves Elmo and the Wonder Pets, and I guess, I’ll admit it, so do I. Today he took Mac and Tosh (our 2-Scottish Terriers) on a real walk with me in tow. He demanded to hold both leashes and did a fine job as the "pack leader" (re: Caesar Millan, the Dog Whisperer).

And what a day we had today, beautiful. The temperature was in the low 80’s it was just another day in… pleasant. Best Wishes from Tucson!

Michael – mlwintory@msn.com

LISA TODAY - 2007 JUNE 30

2007-07-01T16:39:00.000-07:00

At home in...
Oro Valley, Arizona

From the last journal, you will recall that Lisa is now at home with all of her own hospital equipment as her bedroom was converted will the necessary support and monitoring equipment to accommodate her. Remember? She is breathing on her own, but is constantly monitored to assure that her oxygen level and heart rate are what they should be. Lisa continues to receive a variety of supplemental vitamins and mineral—some of which require Patrice to crush the pill form prior to administering them in her feeding tub. One particularity obstinate pill is the iron supplement--as the outer shell is very difficult to reduce to a fine grain. Fortunately for Patrice, who has the job of crushing and administering the dosage, the Doctor wrote a new prescription so it is now liquid form. Lisa has a new physician who makes home visits as part of his regular practice and coincidently lives nearby. She, Lisa, also receives regular visits from a home healthcare, professional nurse.

Lisa’s lift works perfectly and comfortably. Patrice easily moves Lisa about the home. She has ready access to the family room and other space in the home. But most important here, Patrice without physical strain (or stress) is able to lift and move Lisa from her bed into her wheelchair. For example, last night Richard took Lisa out for supper to Ann and Jim Peterson’s home which is across the street. It was not unlike when Richard took Lisa in her wheelchair from her hospital room to the tranquility garden. We were all their, Lisa and Richard with Michael; Patrice, Sherry, and me and of course the Peterson’s. It was a wonderful evening.

A couple of days ago Patrice was shampooing Lisa’s hair and asked Lisa too tip her head back and Lisa complied with a deliberate head movement in response, and when asked to move her head forward Lisa did! Yesterday, I was telling Lisa about how nice the new outdoor pool covers, that were installed to protect Michael from a swimming pool accident. While I was talking she engaged me with eye contact, and then turned her face away from me when her part of the exchange was complete.

Richard’s sister Laura from Galesburg, Illinois, flew in to Tucson and spent a wonderful week with us. She always brings good cheer and high spirits, and I must say, it was a truly a welcomed relief to have her here. She spent her days with Sherry, Michael and Me and her evening with Richard, Lisa, Michael and Patrice. No kidding, it was really good to see and be with her.

We’re all a bit tired, but very enthusiastic about what we have seen of Lisa reaction to being reacquainted with her home its sights, sounds, perfume and people.

I have received several e-mails responding to Lisa’s Home Coming, and want you to know how much I (we all) appreciate your encouragement and well wishes. Thank You!

Michael
mlwintory@msn.com

The picture is of Patrice, Lisa's care giver.

HAPPY 4th of JULY EVERYONE!

Lisa Today - 2007 June 15

2007-06-16T20:24:00.000-07:00

Home… Home at Last!
Oro Valley, Arizona

There wasn’t really much fan fare, but those closest to Lisa from the hospital staff came to say goodbye and expressed their well wishes. Then, the day continued with two paramedics from the Phoenix Paramedic Transport service who brought Lisa, with Richard sitting beside her, home in their ambulance. To make sure we were at the hospital before the 1:00 PM transport to Tucson, Richard and I left for Phoenix at 7:00 AM. Then after loading my vehicle with Lisa's things and her wheelchair I was off to Tucson, and arrived home near 10:30 AM.

The timing of Lisa's move was as close to perfect as one could get. You see Lisa's discharge date and time from Select Specialty Hospital was firm: 1:00 PM, Friday, June 15th. Richard's Jury was still out on Thursday, June 14th, and they had been deliberating since Wednesday the 13th. The jury was deciding the guilt or innocence of a man accused of racketeering, drug dealing, murder and kidnapping, and other felonies. It (the trial) had taken 6-weeks, and now it has come down to the final day and everyone is waiting, and waiting, and waiting, and then at 3:30 PM the jury came with their verdict: GUILTY! And, so it came about the way it ought to... one more bad guy is off the streets of Tucson. There is a coincidence to my way of thinking in that just a year ago Richard tried a case in Ada, Oklahoma that concluded just-about-this-time. A current best seller titled "Innocent Man" was written about the case. I was John Grisham first non-fiction book.

Lisa’s home coming went well; with only a few glitches that were corrected by the time of her arrival. For instance, her specialized hospital bed arrived at 10:30 AM Friday. It was a replacement for the incorrect bed that was delivered a few days earlier. There were other things I could tell you about, but what the heck everything worked out so at this point it really doesn't matter. What does matter is that Lisa is home and loving it!

Michael
mlwintory@msn.com

Lisa Today - 08 June 2007

2007-06-08T21:31:00.000-07:00

Select Specialty Acute Care Hospital

Phoenix, Arizona

Lisa has regained her weight. She has reached 132 lbs, and now is breathing on her own without oxygen assistance; also Lisa’s heart rate is normal. She has begun to vocalize somewhat, and as Ann Peterson would say, “That’s a good thing.” Patrice Mills, Lisa’s Certified Nurse Assistant is completely on board. She is managing the inventory of supplies and equipment that Lisa will need after she arrives in Tucson at Lisa and Richard’s home. I don’t have a picture of Patrice yet, but will include one after Lisa comes home. By-the-way, her discharge is coming up soon, but I do not have an exact date yet because everything must be in-place and at hand for Lisa when she arrives, and that big job is being worked on as we speak by Richard and Patrice here, and others in Phoenix at the insurance company and the hospital. I am happy to report that we have a physician on board with us now in Tucson. His name is Joel Moncizaiz, M.D. I’ll tell you more about Dr. Moncizaiz and how Sherry recruited him later. Understand this, no skilled nursing facility her was willing to take Lisa; therefore homecare was the only option, and further without a physician to supervise her care… well that’s a nightmare thought.

I told you about the Ed Hill and the gang raising $6,000.00 for Lisa’s care and credited everyone who made it possible, well almost everyone except Dennis Frazier. You’d think he’d be first on everyone’s mind… because it was Dennis who provided the lunches for class participants and donated the funds to Lisa and Richard. Please accept our belated thanks to Dennis, and absolutely everyone else who contributed to make the project such a big success.

On June 10th, Michael celebrated his 15-month birthday at the doctor’s office. No big deal: a quick height and weight check-a couple of shots and out the door, or so I thought. He contracted some kind of bloody bug that made him quite ill. I’ll spare you the details because most of the people who read this know about from their own experience and for those who may not, sooner or later you-they will. Thank goodness for Huggies.

The rail which will enable Lisa to be comfortably transported (outside of a wheelchair) is up in Richard and Lisa’s home. The track runs from the great room, of their home, up the stairs into the master bedroom and on to the bathroom. There is a spur off of the track leading into what will become Lisa’s therapy room. The workman did a very nice job. The track (rail) is secured with large, long bolts with go through the roof and are there secured. I’ll show you pictures after Lisa comes home.

We had a wonderful visit with Jack and Napua Davis who stopped by for a few days on their way back to Norman, OK. They were visiting their daughter and her family in California, and make like grandparents. They were in Phoenix last Sunday with Lisa and Richard. Napua told me that Lisa turned her eyes to Jack when he began playing his flute for her. The music is his signature and private channel to Lisa’s heart.

Richard used the camera in his phone for these pictures of Michael. They were taken at the hospital healing garden.

Michael
mlwintory@msn.com

Lisa Today - May 16, 2007

2007-05-24T11:42:00.000-07:00

I retired from the U.S. Air Force with 22-years service. During my service, I witnessed countless acts of kindness extended to others in times of crisis by the airmen with whom I served. These selfless acts were, to my knowledge, never given as a savings deposit for some future personal calamity; instead, people came forth from every level with helping hands and resources. When I returned to civilian life I observed the phenomena again; never anticipating a personal need for someone as close as my immediate family. And yet, reflecting upon how I came to America, people bestowing kindness should not have been a surprise to me. I won’t go into all that, but I do want you to know what a few of the good guys are doing in their “spare” time to make a difference in Richard and Lisa’s lives... It is extremely noteworthy to recognize the countless federal employees who altruistically donated their personal, annual leave time to Lisa, and the magnanimous contribution by Christina Cabanillas and Tom Bevel for Lisa’s care.

The first of last March a two-day, accredited seminar entitled “Tracking the Money” was conducted at the Oklahoma City Police Training Center as a fund raiser. It was attended by 52 students. For the most part, those responsible for putting it together was Major Ed Hill, Sergeant Wade Taylor from Oklahoma City Police who did a lot of the leg work. CJ Murphy with the Oklahoma Attorney General’s Office and Larry Andrews helped get the word out. We would be remise not to mention Butch Milan who arranged for Jim Holland to assist with the training. Butch paid Jim's air and lodging to get him here, and the rest was all up to the instructors who donated their time. All proceeds for the benefit of Richard and Lisa. Richard and Lisa received a check in the amount of $6,000.00. Major Hill said, “We knew there was a need and wanted to help. I am so glad it all finally came together.

The Oklahoma State Attorney General Drew Edmondson welcomed the attendees. (Mr. Edmondson had previously hired Richard and he also selected Lisa to lead his State Multi-County Grand Jury Unit.)

Tracking the Money, the five components

Financial Investigations by Dave Landrum

Interdiction & Tracking Drug Proceeds by Jim Holland
Preparing Financial Cases for Court by Dave Landrum

Tracking Money by Jeff Sandy
Tracking & Seizing the Terrorist’s Money by Jeff Sandy

The Instructors
Dave Landrum – Retired IRS Special Agent with 28 years as a CID Investigator including 10 years experience as a long-term undercover agent in money laundering investigations. Landrum has taught money laundering investigative methods in Europe, Africa and Asia. Currently serves as a consultant to law firms on criminal and civil financial crime issues and assists financial institutions in complying with the Bank Secrecy Act.
Jim Holland – Lieutenant with Texas DPS who oversees Criminal and Drug Interdiction and forfeiture investigative techniques.
Jeff Sandy – Certified fraud examiner and owner of Forensic Financial Investigative Services LLC, worked for over 25-years as a special agent for the U.S. Department of the Treasury, Internal Revenue Service CID, Mr. Sandy has supervised some of the nation’s largest investigations into corporate fraud, bank fraud, worker compensation fraud, and narcotics trafficking. In 2003, Mr. Sandy was assigned to a U.S. Military Joint Operation called the Iraqi Survey Group to trace the hidden assets of the Saddam Hussein regime. As a result of his work in Iraq, Mr. Sandy received the Honor Award from the Secretary of the Treasury and a Joint Service Achievement Medal from the U.S. Army.

Michael
mlwintory@msn.com

Lisa Today - May 6, 2007

2007-05-07T21:11:00.000-07:00

Select Specialty Hospital
Phoenix, Arizona

Not a lot to talk about this week so I have included three pictures of Michael to share with you. All of the pictures were taken while Lisa with Richard and Michael were all resting in the healing garden at St. Joseph’s Medical Center. Richard’s cell phone, as you can see does a pretty nice job on a catch as catch can camera work. The weather was picturesque according to Richard, and Michael was really fun to be with as he remains mostly cheerful. The third photograph clearly illustrates that for a 15-month old; idleness is altogether uninteresting and therefore intolerable. So, here he is trying out some of his moves. For Michael movement is constant. His every wakening moment is an opportunity for discovery, adventure and exploration. But then, running constantly at a very high RPM rate is not without its consequences, and resting one’s engine is not only necessary, but as the picture on the left proves; irresistible.

Richard meanwhile continues his recruiting efforts to find the right person who can and will provide Lisa’s home health care. I’ll let you know as soon as possible when he finds the right person, but for now there’s nothing new to tell you.

I’m sad to report; the Susie and Lyle Wuertz Family of Indiana suffered a dreadful loss last week with the passing of Susie’s dear Mother--who had just recently celebrated her 99th birthday. The Wuertz’s are close friends to Richard and Lisa. When one’s time of passing arrives it brings a deep sadness and isolation to our core. Though, with the touch of those to whom we draw close, we find comfort, and thank G_d, for that and the life lived.

Michael
mlwintory@msn.com

Lisa Today - April 30, 2007

2007-04-30T16:47:00.000-07:00

Select Specialty Hospital
Phoenix, Arizona

Three-days ago, April the 27th was Lisa’s 41st birthday. It was the second she “celebrated” with Richard and Michael in a Phoenix hospital. Looking back a year ago, at this time, one would have found her hospital room wall-papered with birthday cards, well wishes, letters and tracks of encouragement, and religious praise for G_d. This year, not the same volume of cards, but many inspiring ones, and some quite humorous arrived to share their spirit and message with Lisa. Richard read (and carefully described) each and every of them to Lisa with Michael sleeping peacefully in her arms. For the occasion, the staff festively placed birthday decorations on the equipment stands within Lisa’s view beside her bed. Inflated surgical gloves make wonderful happy faces when decorated with a magic marker. The spiked-pointy-fingers remind me of Sanjaya’s Mohawk hairstyle from a recent American Idol FOX-TV Network program; that you may have seen.

The picture of Lisa is from her wedding day at a magnificent resort hotel, The El Conquistador in Oro Valley, Arizona, November 9th, 2004.

It was a beautiful weekend in Phoenix; the Palo Verde trees are in full bloom. The trunks and limbs of this tree are green and the abundance of bright yellow flowers make it a joy to behold. The cherry blossoms in Washington DC compare, but the annual display here is much more shocking to me considering the contrast to what I’ve seen desert display most of the year. I’ve included a PhotoShow to let you see it.

Health wise Lisa’s weight is stable at 128 pounds, and she continues to receive nutritional supplements for a weight gain regimen. Dr. Bliss is treating Lisa for a staph infection. He is going after it very aggressively with powerful antibiotics.

Richard’s hunt continues for a full-time, in-house, caregiver for Lisa. There are some prospects that he is communicating with but no contract has been signed yet. Bummer.

Michael
mlwintory@msn.com

LISA TODAY - 22 April 2007

2007-04-23T14:01:00.000-07:00

Select Specialty Hospital
Phoenix, Arizona

You may have noticed from the “Lisa Today” heading that Lisa is still in Phoenix. You remember, I told you she was, pretty-much, expected to come home last week. The hospital’s discharge intentions and the coming home to Tucson plans have not changed. What happened? The nursing facility in Tucson informed the folks at Select Specialty Hospital in Phoenix that they did not have “bed space” for her on Friday as we thought. Hey, the on again-off again really doesn’t bother or stress us because SNAFU has been the norm for the past year, and we all have gotten used to living with it. You know, to be fair to all concerned, getting a reservation at a nursing facility for Lisa is quite a bit more complex than booking a motel room; I’m sure you would agree. I know it is self serving for me to say; but, we all have been extremely sensitive that we “not kill the messenger” when bad news comes our way. It’s fair to all concerned and worked pretty well in keeping everyone’s blood pressure down and lines of communication open.

For the trip back home to Tucson, Lisa she will be transported by ambulance. Her specialized wheel-chair will accompany her in the ambulance. The wheelchair is so heavy because it is made to become motorized, with additional equipment modification; hence the heavy weight of the chair.

Then late Friday afternoon, we learned Lisa’s transfer on Monday was also ruled out; so we’re now on a “runway alert” situation, as we used to say in my old Air Force days. Anyway, with the transfer delayed it gives Richard an opportunity this weekend to say thanks, and say goodbye to everyone at the hospital again. And another thing, I know that strong attachments were formed during the past year so it’s really bitter sweet for everyone at the hospital and for Richard, Lisa and Michael. I wanted Richard to take a lot of pictures to share with you so you can get a sense of how it is in Phoenix.

Late afternoon last Monday, Ruben, the contractor, who will make the necessary modifications to the residence, met with Richard to review the plans for Lisa’s lift, and establish the work schedule. After meeting with Ruben, we’re thinking it’s about 45-days to completion. How realistic this is, well is anyone’s guess at this time.

On another front, finding the right caregiver for Lisa’s continues to be the number one priority. We have had high hopes in finding some, but with caution—and caution was justified as so far nothing has come to fruition. At the moment, Richard is discussing the caregiver position with a physical therapist. According to her resume, she has good experience working with patients who’ve had similar diagnosis as Lisa. She seems very qualified. Correspondence is flying between her and Richard now. She is our best prospect to fill the bill.

Richard took the pictures shown here when the family was resting in the beautiful Healing Garden at St. Joseph’s Hospital. Michael, until just recently, has not tolerated any sort of head cover. The ball cap does a nice job of shading his eyes. In the third picture (from the top) Lisa joins Michael for a nap. In the last picture, you can see what nice garden it is.

That’s all the news for now. Hope you have a great week!

Michael
mlwintory@msn.com

Lisa Today - 16 April 2007

2007-04-16T09:07:00.000-07:00

Lisa Today – April 16th, 2007
Select Specialty Hospital
Phoenix, Arizona

For over a year now in Phoenix, St. Joseph’s Medical Center has provided a roof over Lisa’s head; within the medical center, is Select Specialty a long term acute care hospital designed to care for patients like Lisa. Her admission was justified and approved because she met their criteria of needing healthcare services for a patient with a medically complex, and catastrophic injury. Select Specialty, is taking care of Lisa’s medical deficiencies while the Barrow Neurological Institute (also housed at St. Joseph’s) continues to monitor her neurological progress and treatment. Lisa no longer requires hospitalization for neurological reasons.

Another big player in the provision of Lisa’s care is her insurer, Blue Cross–Blue Shield. Until recently the insurer has been stellar in providing the financial resources so vital in giving Lisa the best opportunity for recovery. I mention this now only in passing to let you know that we have appealed their decision to cut off funding, but so far haven’t received a reply as she continues her $2000.00 a-day, acute care long-term hospitalization.

In answer to the question, “how’s Lisa doing?” We believe, with the staff, that Lisa is present and aware; we’ve known this by her past responsiveness to instructions and questions. Lisa, to her great credit, has been relentless in her fight to overcome the painful effects of Spasticity, and the other medical issues that confront her… relentless until very recently. But now, regrettably, she isn’t responding to stimulus except for loud, sudden noises.

Lisa is medically stable and soon will be ready for discharge, meaning she can be cared for at home; therefore Richard has redoubled his efforts to find the right person to care for Lisa at their home in Tucson. He has placed more advertisements in more places for a caregiver; also Deb Pope, Therapy Supervisor, Select Specialty Hospital has put him in touch with new Tucson resources to expedite the recruiting effort.

Richard’s attorney has successfully facilitated his getting a home equity loan to pay for the renovation of the residence. He has a meeting with the contractor and builder is later this week, and hopefully the remodeling will start soon.

Finally, we learned that a skilled nursing facility in Tucson has agreed to take Lisa. Sherry and I intend to visit the facility as soon as possible, and I’ll let you know how it goes. This information came to Richard at a time when Select Specialty Hospital declared Lisa ready for discharge. But on top of that her primary care physician is treating her for a bladder infection, and is not going to authorize the discharge until the medical issue resolves.

Michael
mlwintory@msn.com

Lisa Today – Easter 2007

2007-04-09T23:06:00.000-07:00

Select Specialty Hospital
Phoenix, AZ

There are times when ones child makes one proud, and Michael was indeed an Angel during Easter Services at St. Joseph’s Hospital Chapel last Sunday. He was almost attentive, well I shouldn’t go that far, but he didn’t squirm around, chirp or cry. Richard reported, “He was with us, Lisa and me, and I felt blessed and I believe Lisa did too.”

Lisa’s weight loss is now under control, and we’re all pleased with that. Her caloric intake was increased and is being very carefully monitored. She is expected to show progress with her weight soon. Her therapy continues as are all of the other services we’ve come to expect. In the picture below, Mary Francis and Moira are shown with Michael; it is a wonderful picture because it typifies the relationship he has with them and the other hospital staff. It occurs to me just how much a part of his life that these wonderful people have become over the past 14-months. And, I am so grateful to them for the warmth and nurturing kindness he receives from all the wonderful folks who take care of Lisa at the Select Specialty Hospital in Phoenix.

Sherry took Michael to the pool several times this past week, I came along too, but it was really Sherry and Michael’s deal. Among her many skills, being a certified swimming instructor is one. To say he took to the swimming pool like a duck to water would be an understatement… he loved it. The water temperature was 84 degrees and the air temp was 90, perfect! There’s something special swimming in an outdoor pool in early April that is a real turn on, after living in Illinois and Iowa for most of my life. The thing is he has these big blue eyes and golden curly hair that strangely affects the ladies. It is something I certainly never experienced! I’ll illustrate some of his charm in the picture of him (on the right) eating his morning tooth brush.

I took too long between updates, and I apologize to you for not keeping you current. I now realize that a little bit news is much, much better than no news so I have rededicated myself to crank out one of these weekly.

Michael
mlwintory@msn.com

LISA TODAY - 31 March 2007

2007-03-31T16:03:00.000-07:00

Select Specialty Hospital
Phoenix, Arizona

Mid-February through End-March 2007

Richard’s hopes were running high—in fact, we all had high hopes that Lisa’s spasticity would lessen after receiving 20- medically approved hyperbaric therapy treatments. If Lisa’s muscle tone returned closer to normal, she would be much more comfortable. And, those who care for her could do so with less difficulty when they move her in bed and to and from her wheelchair, or when she receives physical therapy, and range of motion exercises.

We knew there were no guarantees we got the message at a special meeting Richard attended with all of the principals who care for, manage, fund, administer, and oversee the healthcare services Lisa receives at Select Specialty Hospital. The meeting was called to assure everyone understood and agreed to their part in Lisa’s upcoming hyperbaric therapy and her eventual discharge from the hospital. It was all discussed: who, how, where, what, when and why. Richard drove to Phoenix to attend that Thursday meeting. The bottom line, Lisa would have to show 'measurable improvement' for the hyperbaric treatment to be deemed successful. The 'measuring' would be done by her therapists and caregivers. They would be in the best position to evaluate her progress and provide the most objective, timely and informed assessment of Lisa's functional improvement. Their findings would be documented and reported to Dr. Kwasnica.

It was stated that if 'measurable improvement' was shown, Lisa would qualify for additional hyperbaric treatments until her improvement would 'plateau'. Blue Cross representatives who were present, later that day agreed in writing to pay for 20-sessions under these guidelines. They further agreed Lisa would stay at Select throughout this process.

Part of the 'process' was to be Lisa's discharge plan. The discharge plan is a detailed strategy to assure all concerned that Lisa would have a safe, secure, well equipped, supplied and properly staffed once she was ready to leave Select.

All agreed the options for Lisa to make significant improvement were about played out and that afterward, whatever gain came from the hyperbaric and other tone management treatments, Lisa's discharge plan would include:

• Getting Lisa as medically stable as possible, that is her nutrition via tube feeding, her airway protection through her trach, her susceptibility to motion sickness and other medical conditions should be capable of being maintained in a home setting.
• Identifying the braces, splints and other equipment she would need to manage her spasticity, along with the optimum mix of medications for her pump.
• Identifying, ordering, and have delivered the equipment and supplies necessary for Lisa to survive and be comfortable at home. It was understood that Blue Cross would have to review the lists of medical and rehabilitation equipment to determine what would be covered by insurance. Richard would be expected to come up with the money for the necessary, but uncovered items. For example, for Lisa’s bath a lift is needed to transport her from bed to bath, and a special chair to position her safely in the tub, but neither the expensive lift nor the chair are covered.
• Staffing needed to be recruited and hired, and then they along with family required training in order to provide Lisa with the 247 care she requires.
• Doctors in Tucson would need to be identified and willing to manage Lisa's care. The Tucson medical staff will be briefed by Lisa's current team in Phoenix.

'Homework' assignments were made and accepted. The Phoenix doctors would oversee Lisa's care for their areas of practice and find or at least brief in Tucson physicians. That is Dr. Fracica hyperbaric; Dr. Kwasnica neuro rehab and Dr. Bliss all other medical issues as Lisa's attending physician.

The Select staff would prepare and submit for review (to the Phoenix doctors) a list of equipment and supply items, once approved would then go through vendors to Blue Cross for review and approval. The approved items could then be ordered and delivered.
Richard's assignment included ordering non-covered items, finding the staff to care for Lisa, getting the necessary modifications made to their home (the ceiling lift being the biggie) and then figuring out how to pay for it all. This was no small task.

After hiring two different law firms which specialize in the field of healthcare disability benefits, Richard learned Lisa was ineligible to receive Medicare home health benefits for 2- years from when she began receiving Social Security Disability benefits. The waiting period was because Lisa did not meet the 65-years of age requirement. She was also found ineligible to receive Medicaid or Arizona state benefits as well.

Blue Cross offered to help Richard with the logistics to find caregivers. This was certainly welcomed; unfortunately that offer was a dry well. ((while all this was going on in Phoenix and, as an aside to all of this, As a prosecutor in Tucson Richard’s work gave him the heaviest trial case load since coming to Tucson.
While all this was going on in Phoenix, as if it weren’t enough, Richard’s work as a prosecutor in Tucson found him with the heaviest trial case load he has had since coming to Tucson. I mention this, because I marvel that he “continues to pull the plow with his head up. Frankly I don’t know how he does it… must come from his father. Just kidding, it is all about Lisa and Michael because that’s clearly what motivates him. However, it does stagger one, considering all that he is doing, and besides, has in fact, lead his office since Thanksgiving in the number of cases tried.)

Whew! So the meeting ended with much said and promised. But two things never stated were to fundamentally change Lisa's treatment.

First, Dr. Kwasnica changed the “rules in the middle of game which adversely impacted upon the financial support she received from Blue Cross/Blue Shield.” Even though she was present for the meeting and interacted with the rehab staff during the time they developed and documented their measurements of Lisa’s response to hyperbaric, Dr. Kwasnica decided, without telling anyone, to use a much more rigid and inflexible standard for measuring Lisa’s improvement. The “Ashworth scale” doesn’t, for example, count Lisa’s sitting more easily in her wheel chair if other factors aren’t also found. Simply put, the Ashworth scale would ignore the improvement Lisa’s therapists and caregiver were objectively measuring.

What happened next was a punch in the stomach because although Blue Cross representatives were present at the meeting, and everyone understood that discharge planning would be going on simultaneously during the hyperbaric therapy, they never said Lisa's insurance coverage would end once hyperbaric treatments were finished; or that all discharge planning must be completed by then. We approached hyperbaric with cautious optimism, because to us, these two critical points were undisclosed at the meeting, even after everyone supposedly was on the “same page”.

Trying to keep this all in chronological order and yet coherent is a… somewhat difficult, I hope you are still with me.

From the onset, every precaution was taken for Lisa during the hyperbaric treatments so she would not be unduly stressed or become uncomfortable during the therapy treatments. For instance, small tubes were placed in Lisa’s ears to help balance the atmospheric pressure of the hyperbaric chamber on her ear drums. No one predicted how she would respond, so we waited. But the wait was bearable thanks to the encouragement we received from emails and phone calls. People were telling us of the many prayers, and many extra prayers which were taking place… prayers of praise and prayers for Lisa from all over the United States.

Then Lisa’s first reports did measurably to show improvement over her spasticity during her early hyperbaric treatments. Her physical therapist noted her muscle tone was more relaxed during therapy sessions. We also heard from Lisa’s Rangers that they were able to move her arms and legs with less resistance than they had for the previous months. And further, Lisa's hospital caregivers, many of whom didn't even know Lisa had started hyperbaric, observed and charted Lisa's improvement from when they bathed and turned her.

It was about this time that three complications adversely affected Lisa’s medical condition, and retracted her response to the hyperbaric treatments. Her progress took a dive.

• First, the scopolamine patch Lisa wears behind her ear controls vertigo, nausea, gagging which comes from her brain injury and occurs when she is moved. In fact, at an earlier time, vertigo forced her therapy to be stopped until prescribing the patch helped her regain control of the vertigo. The patch is the similar to the one people use on a pleasure cruise to control their motion sickness. A patch was removed during her hyperbaric treatments, and once removed, came off again because Lisa perspires when she exerted or exerts herself. Lisa had been vomiting for several days in therapy and her muscle tone had increased before the problem was discovered and resolved.
• Second, her tube feedings were discontinued for an extra 8-hour to accommodate the time for Lisa's transport to and from and treatment in the hyperbaric chamber, as well as her regular therapy time. This was deemed necessary to prevent Lisa from vomiting and then inhaling tube feedings should the movement cause nausea. The result was Lisa received significantly fewer calories per day leading to a dramatic weight loss. Lisa lost over 10% of her body weight in less than a month. This degree of weight loss requires medical treatment and close nutritional observation and correction. Therefore, one might reason it is an acute medical condition.
• Third, Lisa was diagnosed with a bowel condition which contributed to her weight loss, and required antibiotic therapy for over a week to correct.

No one could reasonably expect hyperbaric therapy to overcome the impact of these three complications. To Richard, Lisa's therapists and her hyperbaric doctors the next steps seemed clear: resolve the complications (keep the patch on, increase her tube feedings, and clear the bowel infection) then see if the documented 'measurable improvement' returned and increased during another 20 sessions.

By the time Lisa's last one hour session in the hyperbaric chamber was completed, Richard was confident everyone would support another 20 sessions. Lisa's patch was secured with tape, her infection was clearing and her nutritionist was working on a plan for Lisa to regain her weight. Rehab supervisor Deb Pope had documented Lisa's improvement as well as the complications in a memo to Dr. Kwasnica.

But then everything started going very wrong. Dr. Kwasnica reported to Blue Cross 'no measurable improvement' based upon her, use of the Ashworth scale, which does not consider all the functional, observed, documented improvements measured by the therapists reporting to Dr. Kwasnica.

With that verdict, Dr. Fracica's (Lisa's hyperbaric doc) hands were tied. Blue Cross was off the hook- why should they pay given Dr. Kwasnica's report- even though their own representatives had told of the 'measurable improvements' over the preceding weeks. So, no more hyperbaric treatments for Lisa, at least while at Select Specialty Hospital.

Next, Blue Cross asks Dr. Kwasnica if Lisa is still 'acute.' A pretty important question, if Lisa's condition is acute her placement in a 'long term acute care' (or LTAC) facility like Select is medically necessary and covered. But there's a serious breakdown here. This question is properly asked of Dr. Bliss; Lisa's attending who can describe her medical acuity. Instead, Dr. Kwasnica answered from a neuro point of view: no, Lisa's not acute.

Unfortunately, the distinction was lost on Blue Cross. They heard what they needed. In fact, when Dr. Bliss returns from the vacation he was in the middle of, he will tell Blue Cross the combination of complications and particularly the weight loss makes Lisa 'acute' and her stay at Select medically necessary, but by that time the decision had been made: Lisa will lose additional hyperbaric treatments and continued coverage for her stay at Select.

Rather than the commitment to helping implementation of the discharge plan, Blue Cross gives us 4 days to get Lisa out of Select or start footing the $2,000 a day bill.

Blue Cross says this knowing that the equipment, supplies, staffing necessary for Lisa's survival are not yet in place; that her attending physician isn't in town and the doc covering for him refused to discharge Lisa because it would be 'unsafe.' Blue Cross maintains their position even after Dr. Kwasnica corrects the misunderstanding and tells them she gave no information about Lisa's medical acuity.

Forced to choose between an unsafe, premature discharge and potential bankruptcy, the choice for Richard is clear. Lisa will stay at Select while an appeal of Blue Cross's decision is pursued and the discharge plan is implemented.

We never expected, at this important time that “Lisa’s response” to the hyperbaric therapy, despite her complications, would become an evaluation using never disclosed scales rather than the ones agreed upon. Then, taking that information from the neurologist, that Lisa’s insurance company, Blue Cross/Blue Shield, would decline to pay for additional hyperbaric treatments or the continuation of her hospitalization at Select Specialty Hospital.

The conflict, in my opinion, led to an administrative blindness to the three (vital) complications that happened during Lisa’s hyperbaric therapy. Three factors that inhibited Lisa from getting evenhanded benefits from the therapy she received, and in my opinion skewed the interpretation of her response to hyperbaric treatments. This translates to Richard and Lisa receiving a request from the hospital to immediately make a $60,000.00 payment to the hospital, and pay the hospital $2,000.00 a day and for 30 days advance.

The 'good news' is that because no facility offering a lower level of care will accept Lisa in her current condition and with no coverage, she will remain at Select.
And that's a very good thing. Efforts to simultaneously increase Lisa's tube feedings while trading down to a smaller trach were a disaster. Lisa began vomiting and with the smaller trach not providing the protection to her airway, she inhales the material resulting in yet another infection.

Fortunately, Lisa's doctors have gotten her through this before and will again.
A new trach, still small enough for Lisa to vocalize and breathe with it capped but with a lung -protecting cuff is replacing the current one and Lisa is slowly regaining weight. (The smaller trach was put in place this past week, and Lisa is breathing easier.)

So, do you suppose these developments, which would have required Lisa's hospitalization even had she been discharged before, have gotten renewed coverage? Blue Cross representatives say no, they are 'through' with Lisa!

Well, we'll see about that.

Michael Wintory
mlwintory@msn.com

(I want to acknowledge and thank Sherry for her input and clarification which helped me immensely me in writing of this journal and Richard too for his patient accounting of the events. Without their assistance, I couldn’t master the material.)

Lisa’s web site is: http://lisalatest.blogspot.com

2007-02-15T10:05:00.000-07:00

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LISA TODAY - January 28, 2007

2007-01-28T20:08:00.000-07:00

St. Joseph Medical Center

Select Specialty Hospital

Phoenix, Arizona

Hey gang, Richard here from Lisa’s room, it’s a beautiful Sunday here in Phoenix. After a chilly (by the standards here) couple of weeks we’re back into the upper 60’s and low 70’s and are able to all go outside again. Making the best of it during the “cool snap” we found a large carpeted lobby fronted with windows that is mostly empty on the weekends. It was here that Michael stood on his own for his mom and dad, memorialized with my phone/camera, and just yesterday took a number of enthusiastic, if not graceful, steps.

Lisa started hyperbaric this past Tuesday; I drove up early to sign the paperwork and be with her as she had the first of 20 treatments. The chamber is about 10 feet long and 3 feet in diameter, the top half is clear Lexan ( the stuff jet cockpits are made of) music is piped in along with updates from nurses and interested observers. Lisa, under the watchful eye of Dr. Fracica, handled the treatment with flying colors and has been green lighted for daily sessions.

So for the rest of the week, Lisa spent an hour in the chamber and her early afternoons in therapy, speech, physical and occupational. Later in the afternoons, Lisa is visited by Yolanda, who ranges her and adjusts her splints, early evening with visits from her rangers, Sandy, Bruce and Laura, Bill or Suzanne (depending on which one isn’t in trial or sick from the bug they keep passing to each other but won’t risk passing to Lisa) and Ken, Vince and Lynn (who’s taken up the calling and leaving her civil practice for prosecution). At night Lisa is visited by her favorite rehab tech from neuro rehab, Heather, who after her day shift, studies with Lisa.

How’s the hyperbaric doing for Lisa? Well, it’s too soon to tell, but so far she had an impressive week in therapy with good nods and a thumb wiggle in response to requests from Maureen, her speech therapist. Lisa’s stiffness due to her spasticity is usually most pronounced in the mornings, I’ve come to expect to have to use all my strength and weight to be able to bend her legs slowly up to relieve cramps and to help her fit into her wheelchair. When Lisa is in pain, or fighting an infection her stiff muscle tone (these folks just refer to it as “tone”) really kicks up.

Yesterday morning (Saturday), when I came to range Lisa’s legs, I found that they were stiff, but noticeably, less than they have been in… well, months. This was true through out the day and into the evening. I tell you that my heart was racing a bit, Lisa was even less stiff this morning. Is this just a good week? Maybe. Could I just be seeing or feeling what I desperately want to? Certainly. So, I took it as a good sign. Last night, Lisa’s nurse’s aide, Jay, who has cared for her regularly since last March told me that Lisa’s tone was much better the last two nights than it was last week. Jay asked me if the medicine in her pump had been adjusted. He said he didn’t know that Lisa had started hyperbaric! Here’s the bottom line, this is the first of four weeks in Lisa’s evaluation period. If these good signs are from the hyperbaric sessions, than we should maintain the improvements and see more. While Lisa was approved for 20 sessions, is she shows measurable (by her therapy team) improvements, Dr. Fracica will continue them. We’ll keep you posted.

On the home front, I want to echo Dad’s thanks to everyone who literally kept a roof over our heads and available for Lisa’s by donating leave time to get us past the time the federal Office of Personnel Management (OPM) need to approve Lisa’s disability retirement. I’d been told in December when I called OPM that we were looking at 3-4 months, and I just about, well, broke out in a cold sweat! But all of our family’s guardian angels weren’t going to let us down.

One of the many calls I got was from an old friend (fearing that a good deed may go punished, I’ll leave him unnamed) who had worked at the Department of Justice and later at the National District Attorney’s Association. We hadn’t spoken in a while and he told me that in the intervening years he’d come to know folks at OPM and offered to see if anything could be done to expedite a review of Lisa’s case. No promises other than the effort. Guess the effort paid off for Lisa, she was approved in half the time I’d been told!

While these angels were at work, so were others. Our friend at NDAA, Jim Polley put the word out of our need for more leave time and many responded. One of those is an Assistant United States Attorney from Missouri, Michael Reilly, who put the word out on the DOJ network. Lisa ranger Suzanne Cohen reached out to a local judge who’d worked in the federal system in phoenix, he spread the word. I received many calls and e-mails from federal prosecutors all over the country many refusing to give their names, just wanting to let us know they were going to help. And of course DEA Special Agent Rich Kivi and my other “homies” in federal law enforcement in southern Arizona at our drug task force and in the DEA Tucson District Office proved again, DEA takes care of its own.

Folks helped even when they didn’t have leave time to give. A former Pima county prosecutor, now working as an AUSA in Tucson, Chris Cabanillas and others sent enough unbelievably generous help that we’re now able to pay for the large portion of the costs of the genetic testing Lisa and Michael needed that insurance didn’t cover.

The combination of donated hours and a 2 month process instead 4 months means we made it over the hump. Fortunately, donated time we don’t need will go back to the folks who offered their leave. Now, Lisa will receive “interim pay” (about half her current salary) until OPM finishes processing her “approved” application, (another couple of months we’re told) before her retirement officially begins.

I’ve pretty much been in trial constantly since before thanksgiving, and was scheduled to start another 3 week racketeering case next week. As it turns out, the defense lawyers got the case continued so I’ve got a week or so to concentrate on the logistics of bringing Lisa home, oh, and I’ve got a birthday party to plan for my favorite saint, Michael.

michael

mlwintory@msn.com

Lisa Today - January 26, 2007

2007-01-26T16:07:00.000-07:00

St. Joseph Medical Center
Select Specialty Hospital
Phoenix, Arizona

Michael gives us all kinds of looks throughout the day. I’m not sure what they all mean, but I have a pretty good idea what the one on the left means. “Do Not Disturb! I am busy with the duck!” I was trying to capture a pose from him for a Valentine Card, but what do I know?

Lisa will as be coming home as soon as she completes the hyperbaric therapy that she began 3-days ago. Everything else, all of the other treatments, I mean, (physical, occupational, and speech therapy) will continue throughout her hospitalization at St. Joseph’s Medical Center in Phoenix. “So when, you ask?” We are anticipating, by late February-early March. Blue Cross/Blue Shield approved her receiving the hyperbaric treatments and the necessary hospitalization time to have them admin-istered. The prescription called for 20, Monday-Friday sessions or 4-weeks time.

I want so very much to have you feel uplifted, about the magnanimous response we received for leave-time for Lisa. Hours flooded in! Enough hours to get Lisa and her family where they needed to be, in order to save the farm-so-to-speak! It was a “Guide Post,” moment for us. May G_d Bless You!

Richard heard from, Betty Willis, Lisa’s Human Resources Specialist. She said that Lisa’s application for retirement was approved by the Office of Personnel Management, and Richard also received a copy of the notification. Clarified this means that Lisa will be separated from the Office of Homeland Security 03 February 2007, and her leave-donations will cease on that date as well. Ms. Willis then noted, “That any excess leave-time must be returned to the donor.” Richard then asked Ms. Willis, “… about the leave-time that came to Lisa by folks facing a, ‘use-it-or-lose-it’ situation? Will they get the opportunity to give it to someone else in need, or would the time just be lost?” To which Ms. Willis replied, “[Unfortunately] we have no control of what will happen with the leave once it is restored to the employee. If it results in leave that they may possibly lose, they will individually have to take that matter up with their agency.” At this time I’m thinking, “No good deed goes unpunished.”

This picture of Bathtub Boy gives you an idea of how Lisa and Richard’s son (11 month old) Michael can melt ones heart! Are all grandchildren capable of this, or is it just me?

Michael (mlwintory@msn.com)

Lisa Today - January 23, 2006

2007-01-26T14:56:00.000-07:00

St. Joseph Medical Center
Select Specialty Hospital
Phoenix, Arizona

It will be a year, February 23, 2006, that Lisa was relaxing in her living room in Oro Valley-just 13-days after giving birth to Michael--shown on the right in a picture I took yesterday, that her tragic saga began. We could look back in Lisa’s BLOG Site Journal (http://www.lisalatest.com/) to get the date when first the idea of hyperbaric therapy was mentioned, but frankly, it doesn’t matter because it is water under the bridge, what does matter is the answer to a question, “… what have you done for me lately.”

This morning at 8:00 A.M., Lisa was transferred from her hospital bed to a narrow, but comfortable gurney. This particular gurney more narrow than most, is to permit it to easily slide into the hyperbaric chamber (tube) that was waiting for her a couple of floors beneath her hospital room. It wasn’t a long trip in the sense of distance… just a few floors and corridors away, and it was easily reached by the sure, steady hands that guided her chariot through the hospital labyrinth. I asked Richard, who left for Phoenix before 6:00 AM this morning to be there with her, “How did she take the ride?” “Lisa appeared comfortable,” he said, “… dozing in fact” – as she waited for all the medical players to arrive. Today, of all days, the Joint Commission on Hospital Accreditation was at St. Joseph’s on a surprise inspection. The inspectors never give a hospital an exact date—it’s more like a range. I compare the Joint Commission to the military’s inspector general (no stress there J). Anyway after a tolerable delay, Lisa was rolled into the chamber, which turned out to be a perfectly-clear Plexiglas tube. She was dozing at the time, but awoke to the sound of Richard’s voice. He, Richard, explained to Lisa what was about to happen, and for Lisa’s listening pleasure country & western music was being sent to her during the oxygen therapy she was about to receive. One of her doctors arrived then to turn off the Baclofen pump during the time she receives the oxygen therapy. The doctor said she will arrange to teach the technicians who operate the hyperbaric chamber how to “turn the pump off and on,” as it will facilitate Lisa’s care. Every precaution was taken during the 1-hour therapy session as the necessary life support equipment was on hand for Lisa should there become a need. The chamber’s therapeutic level was calculated to 1.75 atmospheres that would be like descending 41.25 feet in the ocean. Let me ask you to recall what happens when one’s inner ear when a person submerges in a swimming pool and reaches the bottom at the deep end. Well, to protect Lisa’s ear drums, tiny tubes were inserted painlessly into her ears. I mention this to express the thoughtful care she continues to receive from the staff at Select Specialty Hospital and St. Joseph’s Medical. Here is a factoid that might interest you, Lisa’s trach is held into place with a Velcro strap, Velcro can generate a spark, and a spark inside of a pure oxygen tube is not a good thing, so it had to be taken into account as was Lisa’s cigarette lighter and flint. (Just kidding!)

Blue Cross/Blue Shield is very supportive of the new therapy for Lisa. In fact, they have been beside her every step of the way.

The rest of Lisa’s day was quite busy. She was with Marty (speech therapist) and Connie (physical therapist) at 1:00 p.m. In fact for the next few weeks, her regular PT, OT and SP therapy will continue as well as the hyperbaric. Lisa’s hands, wrists, and ankles are significantly under the control of her Spasticity. And, recently finding a splint to countermeasure its progress has been difficult.

Michael (mlwintory@msn.com)

LISA TODAY - January 20, 2007

2007-01-20T15:48:00.000-07:00

Now for something different, here is a personal letter meant for you from Lisa's brother (David) and his Family...

From my wife Suzanne, my son Collin and my daughter Rylee we would would like to take this moment and say thank you.

Thank you to those of you who have made a donation to my sister's leave.

Thank you to those of you who stop by and visit with my sister daily.

Thank you to the doctors, caregivers, nurses and friends who help her in her rehab and constantly remind her that she is a fighter and she will win this battle.

Thank you to those of you who keep Richard going so he can help fight with my sister. It is truly amazing what everyone has done in this time of need. You have given Lisa so many days to continue her fight and also have helped ease some of the pressures from Richard so he can focus on working on that which needs to be done to help Lisa. It is a battle that they can't fight alone. It takes all 3 of them to help her. It takes all of us to stop and remember that it is our responsibility to do what we need to do so that Lisa can someday be an active part of their lives again. Michael gets crazy when he sees his mother and remember that you are a part of Richard, Lisa's and Michael's life. You are doing amazing things. Even a simple positive thought can move mountains.

Many of you we will never meet. But please understand this...you will never be out of our thoughts and prayers. Good things happen to good people and I believe in my mind and heart that you have done something simply awesome and truly incredible. I pray and hope that your lives will be touched and blessed in the way that you have touched and blessed Lisa, Richard and Micheal "the wild one" Wintory.

I am truly grateful for what you have done and I hope that I can carry on the spirit of doing what is right for other people when they or their family is in a time of need such as ours. I think everyone that has been affected by this tragedy has learned a lesson. I have learned many. I have learned lessons that I will pass on to my children and hopefully carry on what has been done here. I have learned that I can't be selfish and try to get Lisa better for my own needs...it's for her and her family. It's for Richard. It's for Michael. I had the best 35 years of my life with my sister. Now I start the journey of the next 35 + years of my life with my sister, not in a way I would have thought it would ever be...but I still have my sister. That was the deal I made. I told her to stick around and I will do the best that I can for her, Richard and Michael.

Your generosity, donations, thoughts and prayers have made it possible for Lisa and Richard to make it partially through yet another hurdle in their time of need. There may never be a chance for us to sit down and individually thank each and everyone of you who have done so many things for Lisa, Richard and Michael but please understand this once again...We appreciate all of the support and love for this family. I can't begin to thank you enough from the bottom of our hearts.

And once again....thank you for your unconditional support. It will never be forgotten.

David, Suzanne, Collin and Rylee Goodspeed

Michael (mlwintory@msn.com)

Lisa Today - 27 December 2006

2006-12-27T15:06:00.000-07:00

This is a request I hoped, in so many ways, I wouldn't have to make, but maybe you can help Lisa Today.

Despite many months of struggling through setbacks and complications, Lisa has continued to show us she's with us, aware of her condition and wants to reclaim her life. Unfortunately, the degree of her brain injury has limited her ability to communicate to only blinks and slight nods. We have had to come to accept that Lisa will not be able to return to her career as a prosecutor for Homeland Security's Operation Predator. Therefore, Richard submitted the necessary paperwork for Lisa to take disability retirement from federal service.

The delay of this heartbreaking decision for Richard and Lisa, was with the desperate hope for her to be able to make a significant recovery, consequently it has put them in a bind. We learned from the Office of Personnel Management in Washington recently that there probably will be 120-days to process, review and approve Lisa’s retirement application. You see, they won't even assign Lisa's case for 30 days; then it will take up to an additional 90 more days before it's approved. Lisa's leave time will run out sometime in January. When that happens well, to be blunt, Richard and Lisa are a two paycheck family and can't make it-in their home-on just Richard’s salary. This situation they are in is more than an ordinary threat as Lisa is quickly approaching the day she will come home to her residence in Oro Valley.

Therefore, I am asking you, if you or your colleagues in federal service who may have some surplus annual leave time, or are in a "use it or lose it" situation before the end-of-the-year help us by donating some or all of your surplus to Lisa. Those of you who can, and will help, please contact your personnel office to complete a "voluntary leave transfer program" (VLTP) form for Lisa Wintory, DHS/ICE and have the personnel office certify the transfer and fax the form to:

Nina Candol: (949) 425-4919

If you are willing and able to help and want more information about Lisa, please take a look at her BLOG site: http://lisalatest.blogspot.com or contact me at: mlwintory@msn.com or call me at 520-744-4408.

Please accept our best wishes for the New Year!

Michael L. Wintory
mlwintory@msn.com

An additional note, Lisa’s Sheltie, Maggie lost her valiant fight with lymphoma today, among other things Cancer is nasty business, and none of us are taking it real well right now

Lisa Anne Wintory's Christmas

2006-12-25T18:58:00.000-07:00

Lisa update, Christmas Eve
If Christmas Eve is supposed to be one of excitement and anticipation, than I hope we can be forgiven for making Christmas Eve’s day one of rest, contemplation of our many blessings and prayers for those who’ve been such a blessing to us.

The venue couldn’t be better;. We’re in the wonderful new healing garden at St. Joseph’s Medical Center; a beautiful acre of block granite fountains, sculptures that move with the breeze (we have breeze in Arizona, these would spin into the ground in Oklahoma), beautiful desert plants grouped carefully around the meandering paths and patios.

It’s warm in the sun, the air is cool enough for this to be perfect napping weather, and Maggie, Michael and Mom Lisa are taking full advantage. Michael is asleep in his mom’s lap, displacing Maggie, at least temporarily. He lies across Lisa; head on the armrest of her wheelchair with his legs below the knee dangling down the other armrest. Outdoor speakers softly play gentle Christmas music to compete with the water splashing down the face of the fountains. Only the regular helicopters landings bringing tragedy from “out there” to hope and help “in here” which serves to reminds us where we are.

Lisa’s dozing follows a good night’s sleep, I know because we were given a special Christmas gift from Dr. Bliss, (with the intercession from our angels in rehab) and for the first time in months, our family spent the night together. The dispensation will last through the Christmas weekend so Lisa, Maggie, Michael and I will be together to share Michael’s first Christmas Eve and morning together.

It’s hard to know the best gift, but having Lisa’s brother coming again to see Lisa and then drag me to the Fiesta Bowl to watch OU play here in Phoenix will be a great way for our entire family to start the New Year.

I hope each of you have a bit of the joy you have brought our family this Christmas. God bless you all. Richard

Lisa Today - 16 DEC 2006

2006-12-20T20:30:00.000-07:00

On Sunday last, Lisa's brother spent the day in Phoenix with her, Michael and Richard. From the countless trips to the hospital that Richard and Michael have made, they have come to know everyone at Starbucks by name, and vise versa. On Sunday the boys made their regular visit with Uncle Dave entow, and to the delight of everyone, Michael was introduced to whipped cream. Here's what a 10-month old does with a small cup of whipped cream:

View full size

LISA TODAY - 26 NOV 2006

2006-12-04T09:57:00.000-07:00

Michael was baptized by Father Milt; hospital Chaplin at the St. Joseph Medical Center Chapel in Phoenix on Saturday, Nov. 25, 2006. Jack and Napua Davis, Michael’s Godparents traveled from Oklahoma expressly for the occasion. The baptism ceremony was also witnessed by Chris & Michelle Ward, Steve & Jodie Bunting, Bruce & Laura Rhodes, Michael’s baptism is celebrated! Sandy Janzen, Sherry & Michael Wintory, several Select Specialty Hospital staff and Maggie-groomed who was specially groomed for for the event. (In the photograph on the left, the sun is streaming over Father Milt's shoulder and on to the face of Michael and Napua Davis. Richard looks on with Lisa (out of camera range))

On the home front for Lisa’s brother David and his family… David was recognized for his performance and accomplishments as the Manager of the Year. David manages the “PARADIES SHOPS” at the Oklahoma City and Tulsa airports. The company operates airport gift shops throughout the United States. This is well earned recognition for David and his family. (In the photograph on the left, Michael and his Uncle David share a moment in Oklahoma City earlier this summer.

Lisa receives therapy Lisa’s therapy continues with ankle casts in place. The new physical therapy equipment, MotoMed Viva 2, which we talked earlier (see Lisa Today edition 03-06 Nov 2006) adapts well to the casts, and records her efforts.

On the Left: Michael & Godfather Jack Davis On the Right The Baptismal Party

Bruce Bowers and Sandy Jazen
share a lighter moment before
the service.

Maggie is in a dog fight with cancer. It was a rough time for her leading up to last weekend. She needed radiation therapy and hospitalization (but not necessarily in that order).
Maggie’s doctor is taking wonderful care of her. The swollen lymphoid responded well to the radiation and she snapped back well enough to make the trip to be with Lisa and everyone
for Michael’s baptism. Steve and Jodie Bunting were gracious enough to bring her with them
on their trip to Phoenix. While I’m talking about Maggie, Jim Peterson has attended to her
also, and for this help many thanks. -30-

A lot is going on behind the scenes with regard to upcoming therapy for Lisa. We’ve talked about this in the past, so I won’t go all through it again; suffice it to say, after the internal review board at St. Joseph’s completes their review and publishes their review we will let you
know about their finding, and what it will mean for Lisa.

In future Lisa Today updates, I would like to share some of your comments, but I'll ask for your permission before posting.

Richard and Michael are spending this past weekend with Lisa at Select Specialty Hospital in St. Joseph’s. The days are spent with Lisa in her room and outside to the hospital gardens and fresh air. Their evenings and nights are with the grace of Sandy Janzen. Maggie loves to be in Lisa’s lap, she is clearly contented and happy to be there.

I hope you all have had a wonderful, fulfilling Thanksgiving Holiday, and that you were able to
share it with those nearest and dearest to you. Thank you as well for caring about Lisa, and the
rest of us here in Tucson. It provides incalculable comfort and feeling of support.

Michael (mlwintory@msn.com)

Lisa Today --- Thanksgiving 2006

2006-11-24T21:00:00.000-07:00

Hey gang, we've had a lot going on so let's get right to it.

Lisa has moved out of Barrow Neuro Rehab Unit and is back with the group of therapists who worked with her from March thru June when Lisa made the greatest gains since her injury in February. You'll remember after Lisa's dramatic helicopter flight from Tucson for treatment of the deadly Stevens Johnson reaction at the Arizona Burn Center here in Phoenix, Lisa was transferred to Select Specialty Hospital, a long term acute care facility (ltac) located in St. Joseph's medical center and under the care of Dr. Kwasnica, program director of the world famous Barrow neuro rehab unit.

It was with Maureen (speech therapy), Connie (occupational therapy), Deb and Marty (sharing physical therapy duties) that Lisa went from virtually no ability to interact with us to consistent head nods to very complicated questions. Then, as we all know, Lisa's muscle tone driven by errant signals from the severely damaged portions of her brain, took away her gains and left her vulnerable to a series of complications and infections.

The effort to protect Lisa's opportunity to make a significant recovery led her doctors to transfer her from Select Specialty Hospital to the Barrow neuro rehab unit also located here at St. Joe's. The valiant efforts made by her doctors and therapists there protected Lisa's health and range of motion, but failed to break through her spasticity. Unable to make progress, Lisa could not remain in the neuro rehab unit. The folks there felt that evaluating and possibly adjusting the med mix in her pump, reviewing her amenability to other spasticity treatments including hyperbaric should be done while Lisa is in another acute care facility. Then, if Lisa does show significant enough improvement to meet Barrow's criteria she will be welcomed back.

When we did our last update, where Lisa was going was still unresolved. I told you Select had initially declined to accept Lisa back as a patient for reasons I hoped to have resolved by November 8^th. My hopes were realized and Lisa was given the opportunity to return to a group of nurses, CAN's and therapists (while retaining her team of doctors) who've cared about and for Lisa through thick and thin since March.

Lisa's return was pretty emotional. It seemed like a big step back, and yet coming here was so much better than any alternative. I was also concerned about how we'd be received for reasons that I'll explain another time. As it turns out, I shouldn't have been worried at all. Waiting for us were old and good friends with tears and open arms. Her therapists know what Lisa can do and have been able to help Lisa do things she hasn't done in months- head nods, jaw movements – not in a big way yet, but still really encouraging.

The Select folks also got a moto-med dad talked about in the last update, and I am able to use that on the weekends with Lisa. This past weekend was a hoot, I set the moto-med up in a day room with windows facing the city, Michael- who will not be contained- crawled, lunged and cruised on the freshly mopped floor, while Lisa worked out for about 50 minutes, pedaling over 7 and half on her own according to the machine's software. While we're still having our ups and downs, overall, Lisa's tone is less and her responsiveness is more than it has been in quite some time.

We're still waiting for the final approval from St. Joe's Internal Review Board for Lisa to receive hyperbaric treatments but expect to hear in the next few days. Now that Lisa's therapy team has had a good chance to put her through her paces, they'll meet with Dr. Kwasnica to plan next steps. Serial casts are back on her ankles to get them back to a more neutral position, new splints developed by Lisa's Barrow OT, Trent, and Connie here are helping her wrists, hands and arms so all we need is a break!

Lisa's wonder dog Maggie has been proving that dog's and their masters share similar attributes because she's certainly got Lisa's fighting spirit. Maggie had been struggling with a congestive heart condition when she was diagnosed with lymphoma. Her vet, (actually, a board certified oncologist) has been treating her with chemo and other drugs. After an initial downturn, Maggie's responded beautifully, demanding her morning walks and darn near knocking me down when I walked in the door- pretty good for an eleven year old sheltie.

This past week though, it seemed her luck was running out. A big lymph node in the center of her chest combined with her enlarged heart had us all worried we'd lose her this week. Instead, she took a dose of radiation, a stay in an oxygen cage, and now we expect to have her here with Lisa this weekend! Maggie's visits are a treat for Lisa and her staff and I'm grateful to our friend and neighbor Jim and my Dad for making this possible by giving Maggie her meds, getting her to the vet and bringing her up to Phoenix.

Speaking of my Dado, he and Sherry moved into their new home right down the road from us. Helped by their Posse, they got set up enough to have a place of their own in record time. Our good friends and Louisiana natives Butch and Rebecca Milan drove from their home outside of Austin to cook authentic crawfish etoufee, jambalaya, white beans, and crab gratin for the moving crew and their supporters. How authentic? Rebecca had the crawfish and crab Fed Ex'ed in from the Gulf of Mexico to meet her here in Tucson.

Despite the trauma of moving in, dad and sherry haven't missed a beat in caring for their grandson. Dad comes and picks his namesake up in the morning; they make sure he gets his medicine and the ever increasing doses of affection and attention Michael requires. Sherry conducts the forays for food, diapers and other essentials all the while unpacking, organizing, storing, cooking and otherwise caring and feeding the Wintory men. Amazing.

So you can see, it's not hard for me to find things to be thankful for on Thanksgiving night. One of Lisa's rangers, Sandy, took time to bring to Lisa's room a plate of t-day dinner cooked by she and her family- good stuff(ing). Our friends Tracy and Carl Miller picked Maggie up from the vet and have brought her home tonight where Jim will look after her, this is after he and Ann cooked Thanksgiving dinner for Dad and Sherry still setting up their home while caring for Michael.

All these folks and others make it possible for me to keep my promise to Lisa to care for her as she would care for me.

Something happened to me today while driving up to Phoenix that increased my determination even more. A traffic accident a short distance ahead of me forced the line of cars all traveling close near 80 mph to slam on their brakes, the large SUV driving a Texas family that had been traveling more or less in tandem with me was, at that moment to my rear. I looked up in the rear view mirror and with relief saw he was going to be able to stop. I looked back ahead to see what had started this mess when suddenly the Texas SUV shot past me on the left in the median. Confused, I looked back into the rear view mirror to see an 18 wheeler hurtling towards us smoke billowing from his tires. I braced for impact and worse.

The semi's driver followed just to the left of the SUV into the median, which was steeply banked, his trailer slowly starting to jackknife towards us. He somehow kept his rig straight enough to avoid hitting us, going into oncoming traffic or jackknifing and doing both. I later judged his lane of life to be less than 20 feet in the middle of a sharply sloped median.

His cab and trailer gradually came to a stop and tipped ever so slowly left against the slope of the median, about a 45 degree list. I was looking at space between the two sets of tires. I'd once prosecuted a case where an 18 wheeler had climbed over the top of a car like mine; the picture of the crushed victim came to mind. I ran to cab tilting crazily for its bulk. Others came running, including the father of the Texas family in the SUV. I shouted for the driver to see if he was ok, to tell him he had to get out of there. The Texas SUV guy shouted I needed to get out of there, the cab was tipping over. Having used up my share of luck, I instantly got back over to the passenger side now towering over us from the list.

As the driver was jumping into our waiting arms, we shouted that he was a hero, I asked how he avoided us, and he answered without pause: "I prayed to God and He heard me!" I left my card with him and the responding officers, who wanted us out of there ASAP. The driver called later this afternoon. He said he really didn't remember what happened it was all so quick, he'd never been in an accident of any kind. He just knew there were families in front of him, he had a family and he didn't want anyone hurt on Thanksgiving.

So I'm thankful I'm alive, but for that life to be worth having been spared it must be dedicated to caring for those in need, and, as the wicked witch of the west said "and your little dog, too!" -rmw

Lisa Today - 11 NOV 2006

2006-11-06T22:16:00.000-07:00

Update, 03-06 Nov 06

Lisa’s weekend with Richard and Michael was, to say the least, engaged! She took on a new physical therapy challenge under the guidance of her Physical Therapist Rosemary. Rosemary introduced Lisa to a MotoMed Viva 2. The Viva 2 is an easy to use movement therapy system designed to provide her with a comprehensive movement therapy program. The speed and motor power of the Viva-2 can be adjusted independent of each other providing safe operation.
MotoMed provides continuous user feedback to keep the training session moving in the right direction. Feedback includes a unique symmetry training feature that shows and motivates the user to strengthen and exert greater effort.

This is what the MOTOmed Smooth Drive System does: loosens long term muscular tension (spasticity = high muscle tone) Stiff muscles of arms or legs can be loosened by gently moving the limbs in a flowing motion, slowly releasing muscle tension. Using this knowledge, a particularly gentle drive system has been developed for the MOTOmed viva: the MOTOmed Smooth Drive System (employing a belt drive system rather than a gear drive).

If you would like more information about this here is my source: http://www.southwestmedical.com/Exercise_Fitness/MotoMed_Models/MotoMed_Viva_2_Movement_Therapy_System/12860p0.
Simply copy and paste this Internet address into your Browser’s address field.

Rosemary reported to Richard that Lisa increased pressure when asked to perform the exercise, and found this encouraging.
Michael’s doctor appointment last week turned out great. He weighs 21 pounds and is now 29” long. His EKG was perfect, and Dr. Sampson prescribed a new medicine to protect him against Long QT syndrome 3. A local pharmacy had to formulate the prescription and make into liquid form, so that the dose, he receives, 3-times a day is perfect. So, we got the medication, learned how to administer it by syringe, and tasted it to see just how bad it was going to be. The pharmacist suggested we quickly follow the dose with white grape juice. Sherry told me it was not a pleasant taste at all. Michael took the stuff like a Man! Heck, he didn’t even flinch, but we learned he loved the grape juice kicker. It’s back to basics with Michael: food, rest, exercise, bath, something to bite on, and he’s a happy camper.
Sherry and I move into our new residence November 16th. It is an exciting-busy time for us.

Best wishes from Tucson & Phoenix!

Michael
mlwintory@msn.com

Michael Update - 31 OCT 2006

2006-10-31T17:26:00.000-07:00

Long QT Syndrome, Type 3

When Michael underwent blood testing for the genetic defect, Long QT syndrome, Type 3 (LQT3), that caused his mother's cardiac arrest on February 23, 2006, he had a 50/50 chance that he had not inherited the same defect. Richard received the results of Michael's genetic testing this morning and it confirms that Michael has inherited the same defect.

We have been researching the consequences of this possibility for months, and are all prepared for what we have to do next as a family to insure Michael's health and well being, despite the gravity of the test results. As you can see from the picture Michael has been helping us with the research and we are confident that the future holds the promise for his health and happiness.

What is the QT Interval?

The QT is a time interval on an electrocardiogram tracing. The heart's natural pacemaker fires an electrical impulse to stimulate the heart to pump. The QT interval represents the electrical activity that passes through the heart muscle causing it to contract and pump blood through the heart. The QT interval continues until the end of the contraction when the heart muscle relaxes. The natural pacemaker then produces another electrical charge that stimulates the heart to pump again.

Long QT syndrome is a disturbance of the heart's electrical system. There are no physical abnormalities to detect on physical exam, only a subtle electrical disturbance on an EKG. Please note, 10-40% of long QT syndrome patients have a NORMAL QT interval on initial evaluation, so a normal QT does not exclude the condition. Long QT is caused by abnormalities of microscopic pores in the heart cells called ion channels. Ions such as potassium, sodium, calcium and chloride pass back and forth across the heart cells membranes through ion channels. As they do, they generate the electrical activity that controls the heart's beating. These electrical signals are detected on the surface of the body with electrodes and recorded by the electrocardiogram (EKG or ECG). Potassium and sodium ion channels are two of the sites affected in LQTS. The abnormal channels prolong the process of the electrical charge from the pacemaker passing through the heart muscle and therefore, lengthen the QT interval. This defect can cause the heart to beat abnormally leading to a cardiac arrest.

What are the symptoms of Long QT syndrome?

Sudden, temporary loss of consciousness (syncope) is the most common event. About ½ of LQTS patients NEVER experience syncope. Others have one or many syncopal events or cardiac arrest possibly resulting in sudden death. These events usually occur without warning. They are caused by a very fast cardiac arrhythmia known as torsade de pointes. Typically, the onset of symptoms is earlier in boys than in girls. Events may occur in the twenties, not so often in the thirties, and rarely past 40 years of age.

In patients who experience syncope only, the torsade de pointes rhythm spontaneously returns to normal, usually within about one minute, and the patient quickly regains consciousness, without disorientation or confusion. Some patients experience fatigue afterwards, others feel fine and resume their regular activities. On the other hand, in a minority of patients, the torsade de pointes rhythm persists then degenerates into the heart rhythm known as ventricular fibrillation, which rarely reverts back to a normal rhythm without medical intervention. If the ventricular fibrillation is not converted, usually by electrical defibrillation, the outcome is death.

There are many subtypes of LQTS and all but one involves an abnormality in the potassium channels. Long QT Syndrome type 3 is the only one to involve the sodium channels. In these subtypes, syncope often without warning symptoms, occurs during or just after physical exertion, emotional excitement, or sudden auditory arousal (such as a doorbell or alarm clock) but may occur in sleep or at rest. Conversely, in a simple faint (known medically as a vasovagal event) is primarily due to a fall in blood pressure accompanied by a slowing of the heart rate caused by pain, injury, nausea or stress. There are warning symptoms to fainting such as dizziness, blurring or blackening of vision, tingling or sweating, for seconds to even minutes prior to the syncope. In LQTS type 3, there are rarely any warning symptoms and the event occurs during sleep or at rest and is usually catastrophic.

Michael had his first appointment with his cardiac specialist, a pediatric cardiac electro physiologist, Dr. Sampson, before he was 2 months old and his follow-up appointment was when he was 6 months old. He had no abnormalities that showed on his EKG's at either visit, which was very encouraging, but the gold standard of his own genetic test has indeed identified the inherited abnormality. Michael has been on daily medication to prevent abnormal heart rhythm; since Lisa's genetic testing came back showing LQTS type 3. Michael has never shown any symptoms, but then neither had Lisa. Now that Michael is known to have the defect he will be examined again tomorrow by Dr. Sampson and another EKG will be done. His medication will be changed to one that is specific to his abnormality and a treatment plan will be established. All children without symptoms should be treated because some will become symptomatic and sudden death may be the first symptom. At present, it is not possible to tell which child is destined to have symptoms.

How can Michael be Protected?

** No medication misses!! Treatment for LQTS is effective in most instances by administration of daily medications.

**See doctor regularly for follow-up, even more often during periods of rapid growth. Growing children need medication dose changes regularly.

**Be supportive when the doctor advises "no competitive sports for Michael". Usual physical activities are suitable but competition can be dangerous.

**Channel Michael's energies into sports without intense physical demands (golf, for example) or non-physical activities.

**Have Michael avoid caffeine and over-the-counter stimulants (cold pills).

**Keep abreast of new research and treatment options and be proactive with the medical team.

**Hugs and kisses and Love, Love, Love

Addendum:

I have agonized over not having been able to save Lisa's quality of life when Richard and I fought to keep her alive on the night of her arrest. But, Lisa's grit and determination as she struggles through her rehabilitation has given Michael the greatest gift a mother can give. Michael will forever be protected with the knowledge that Lisa was able to give him with her genetic test results, which literally hold the promise of saving his life. A mother couldn't be more proud.

Sherry Wintory

– mlwintory@msn.com

Lisa Today - 27 OCT 2006

2006-10-30T11:55:00.000-07:00

What a mixed bag of treats and tricks for our little family this, Michael’s first Halloween. The treat has been Lisa’s been stable and doing well since finishing off her course of antibiotics last weekend. No fevers, vomiting or its evil companions- aspiration and infection.

At midweek I visited with Lisa’s neurosurgeon, who, after consultations with colleagues and much review and reflection, concluded that Lisa would not benefit by relieving the small amount of pressure caused by Cerebral Spinal Fluid (CSF) reabsorbing too slowly into the body. The thought had been that a shunt draining excess fluid might help Lisa regain some of her ability to interact with us. Dr. Theodore believes that Lisa, upon closer examinations isn’t showing the kind of impairment typically caused by hydrocephalus. Dr. Theodore is also concerned about a particular risk as well. Draining CSF may cause the remaining healthy brain matter to fold in on itself tearing tiny blood vessels that could cause bleeding in Lisa’s brain. These subdural hematomas can be treated but would be a significant complication and setback that simply outweighs any possible benefit in Dr. Theodore’s view. While I know Lisa would want me taking reasonable risks to get back her ability to participate in her world, this doesn’t seem like one to me, so ‘nuff said.

Ruling out the shunt put us back on track to work on the mix of medicines in Lisa’s pump- or so I thought. We’d been on hold for infections, antibiotics and the shunt assessment but at midweek, we got our first trick of the week. Lisa’s blood pressure dropped due to her becoming dehydrated. The dehydration was a likely caused by her tube feeding being held during the day, so when she was loaded up with fluids her BP popped back up. Still, the medicine that has helped Lisa’s spasticity, clonodin, lowers blood pressure so her med mix is on hold for the time being.

This puts Dr. Theodore and his colleagues back at the plate. Lisa’s brutal muscle tone is threatening her ability to bear weight on her feet. If medicines can’t relieve the spasticity by chemically blocking the messed up signals from damaged portions of Lisa’s brain than the surgical options used before baclofin and clonodin (and still used regularly in pediatric cerebral palsy cases) are still available. Lisa will be evaluated next week to see if these may be of some help.

Tough stuff! But, again all more or less than what we’d expected. I figured Lisa’s due to begin hyperbaric in a few weeks, so that gives us some time to work through these issues to see if we couldn’t get the long hoped and prayed for breakthrough.
So, then comes the big trick: Lisa’s caregivers have decided it’s time to discharge her from neuro rehab, at least until the hyperbaric starts at the end of November. I had been assured that I wouldn’t have to worry about Lisa being moved out before then but other concerns have arisen. Mostly, the concerns are the original ones. Lisa came to the unit, not to rehab but to protect her ability to rehab, with the hope and expectation being that the baclofin pump would work its magic and we’d get to work. The result after four months has been a stalemate without significant progress, at least as measured in terms of regaining function. The continued use of restorative therapists to maintain the status quo has taken a toll on folks who’ve struggled mightily on Lisa’s behalf so if they need a break I want to at least know where they have in mind for us to go.

While we’re deep in discharge planning for home modifications and equipment acquisition, Lisa is not medically stable enough to come home. The obvious choice would be for Lisa to rejoin her old friends back up at Select Specialty Hospital, the long term acute care facility that was our first home at St. Joes from the end of March through June. The therapists and key members of the nursing staff know and care deeply about Lisa. Lisa’s doc’s here would be her docs there as well. Her trip would be in a gurney, not an ambulance.

Time for the next trick. The corporate folks at Select won’t accept Lisa back as a patient. The problem isn’t money, and she’s medically appropriate, but they’ve asserted they have the right to refuse a patient and they’re refusing Lisa, “respectfully.” I’m pretty certain I know why this has happened and I’ve reached out to folks I know in Select to see if I can do anything about this, but at least for another week or so I really won’t have anything to offer them.

All the alternatives are ugly. There is one medically appropriate facility, about which we’d heard bad things, but Lisa’s docs are comfortable with, but they don’t take our insurance. Negotiations to follow.

“… in sickness or in health…” Vows Exchanged. Lisa and Richard. 10/09/ 2004I really can’t put a happy face on this. I’d hoped to use these few weeks of anticipated medical stability to really see how Lisa could do with traditional approaches before the hyperbaric treatments start. I also wanted to concentrate on learning and acquiring what I need to care for and protect Lisa at home. Now, I’ll need to do what I’ve done in each new placement to make certain Lisa’s safe, and cared for by folks who care about her. Fortunately, I’ll be able to count on Lisa’s Ranger’s, Yolanda and the other friends and family I’ve learned to trust to do what Lisa needs.

Another sad transition happened this week I’d been putting off. Lisa’s had no stronger group of friends than her ICE co-workers. Her supervisors, Pat and Kimberly have, in a word, been super. Her federal colleagues, some, friends known to her, others we have never met, have all become family. They (along with many of our other friends in federal service) offered prayers, cards and notes of support and, to help us keep our roof over our heads, donated their own annual leave time. That’s right, while they could have used their annual leave to spend time in Las Vegas casinos, the parking lot of Hoover dam, or the opera in Tucson, these folks instead sacrificed so that Lisa will have her home to come home to.

I’ve been forced to acknowledge that whatever improvement Lisa makes, she won’t be returning to work as a trial attorney for ICE. Applying for social security disability wasn’t too hard; their standard is 5 months of disability. But as Lisa’s donated time is running out, I have to actually end her career as a prosecutor, in order to apply for her disability retirement. I’ve used the months of donated leave the way they were intended, to buy time for Lisa to prove her first neurologist who said Lisa wouldn’t ever be a lawyer again, wrong.

Now for the last trick: turns out the time for the paperwork I submitted this week is two months on an expedited track, our donated leave time will run out some time in November. Well, this one’s on me. I just couldn’t bring myself to do this any sooner. -- Richard

On the home front, Michael discovered that apples are not only applesauce. Here is proof:
Michael in the last two-weeks has become a Tasmanian devil. He stands in his walker and runs around like a whirlwind. Wants to touch everything-taste everything-see everything and feel everything. He discovered that Tosh our Scottish terrier has a beard worth pulling, a water bowl worth tipping and food worth biting. His four teeth work like a beaver on everything. He loves graham crackers, Melba toast, Matzos, and expecially bananas. He wakes up smiling and melts our hearts. He continues to sleep throughout the night, loves his naps and car rides. He is an expert at charming, literally everyone he meets and gets perfectly proper adults to make funny noises and faces for his entertainment. I am so proud that Richard includes him in every one of his trips to be with Lisa, and I know in my heart Lisa feels their presence.

Michael – mlwintory@msn.com

LISA TODAY – 22 OCT 2006

2006-10-22T22:39:00.000-07:00

ST. JOSEPH MEDICAL CENTER

BARROW NEUROLOGICAL INSTITUTE -- PHOENIX, ARIZONA

Hey gang, Richard here from our 2nd home in Phoenix, Lisa’s room at Barrow Neurological Institute. I’m sorry I’ve been slow in updating. I’d hoped to have more hard news this week but we’ve been in a holding pattern, so I’ll tell you what I know, and with Dad’s help fill you in as more details become clear.

I have time to do this now because Michael’s asleep in Lisa’s bed this Saturday morning. Lisa has therapy this morning in about 20 minutes so I thought I’d get started.
This weekend, Lisa’s finishing another round of antibiotics today under the care of our favorite bug doc, Dr. Jones Kumi. The culprit again was Lisa aspirating a small amount of her stomach contents. She vomited when being repositioned during therapy. The balancing act of nutrition, therapy and digestion is complicated by Lisa’s difficulty in closing her larynx tightly enough to seal off her lungs. Lisa’ must receive certain amounts of tube feedings and exercise to protect her from pneumonia, bed sores etc and to advance her recovery. Her nutrition and exercise schedule aids her digestive process, which in turn, keeps everything else …going.

To get Lisa enough calories thru her tube slowly enough to prevent vomiting and its attendant risk of aspiration requires her to be fed from 5:30 pm to about 8:30 a.m. This new schedule has eliminated her lunchtime session which had been putting a large amount through the tube quickly and contributing to the problem.

Because Lisa tends to get nauseous whenever she’s moved, having her stomach empty has been really helpful during the day. Lisa is turned from side to side throughout the night, again to protect against bedsores and pneumonia, but her night staff takes care to avoid problems.
To add another level of protection Lisa’s trach was switched to one that has an expandable cuff to protect against stuff going down the wrong way. The cuff is deflated to let Lisa vocalize as she is able. The result of all this work is that as Lisa and her team finish off this infection, we’ll have in place a new comprehensive plan to prevent another.

Two-weeks ago during Collin and Suzanne’s visit from Norman, Oklahoma, Lisa was getting a scan done to determine if she might benefit from relieving pressure caused by a suspected build up of fluid in her brain. The scan revealed a couple of things. First, that this cerebral spinal fluid (CSF) is not entering the ventricles in her brain, a good thing. Second, the rate at which the CSF is being absorbed back into the body is slower than normal and this is causing an excess of fluid and some pressure. To understand the significance of this, let me flash back.

Some readers have been confused about when and why Lisa’s progress was stopped and her condition worsened. We knew some of this and may now know more. Beginning in the end of April and during May Lisa’s spasticity began to stiffen her limbs and joints. Serial casting was applied by her therapists up at Select Specialty Hospital to try and hold her ankles and feet in a neutral position. Lisa’s doctors suggested an implanted pump to put Baclofin into her CSF was necessary to protect her from the increase in muscle tone blocking her further recovery.
Lisa’s mother and step-father were with me as we witnessed the effect that the rising tone was having on Lisa. It was then we all learned the doctor’s recommendations to implant a pump to administer Baclofen into her spinal fluid. Lisa’s mother and step-father were present with me when the pump was implanted on May 26th. Everyone had the greatest hope that her worsening condition would be relieved so that Lisa could rehabilitate enough to benefit from a move down to the Barrow Neurological rehabilitation unit. Unfortunately, Lisa’s rigidity continued to increase through the first week of June despite a visit from her Uncle Rex and even after the pump’s medicine level was steadily increased.

Lisa did of course move to Barrow’s (BNI) on Father’s day, June, 23rd, but as I settled Lisa into her room that weekend we knew her move wasn’t to begin rehab. The move was to protect her ability to rehab from the spasticity. The Spasticity continued to increase since before that day Lisa’s mother, step-father and I gathered, while her pump was implanted. Only much later the advance of her spasticity was stopped (not relieved, mind you) only by adding clonodin to the Baclofin in her pump in just the last few weeks.

Along with the increase in Lisa’s muscle tone came a decrease in her ability to respond to questions with nods and eye blinks. The decrease hasn’t been relieved by the clonodin and appears to be independent of Lisa’s spasticity. This troubling development means that unlike back in May, we don’t know at what level Lisa’s now functioning. Her recent ability to respond to requests to kick her legs offers the first evidence of responsiveness at any level since the beginning of July.

So with this background, back to the cerebral spinal fluid (CSF) pressure build up in Lisa’s brain. This pressure may be a contributor to Lisa’s diminished and delayed responsiveness. Medical studies and the experience of Lisa’s doctors suggests a pressure sensitive valve implanted in Lisa’s head and draining thru a tiny flexible tube in her abdomen can safely relieve this pressure and perhaps help regain some of her function.

We’ve been waiting the return of Lisa’s neurosurgeon, Dr. Theodore and his analysis of the scan results to learn his thoughts on the situation. If he recommends relieving the pressure, a “shunt” can be implanted and hopefully, enabling Lisa to move forward within a week or so.

One way or the other, once this is resolved, Lisa’s pump will regain center stage as the mix of baclofin and clonodin will continue to be adjusted to see if we can not only stop the increase in Lisa’s muscle tone, but roll it back. In her present condition, Lisa’s ankles in particular remain at serious risk and her overall rigidity will prevent her from making significant improvement.
Other treatments are still available and we’re awaiting final approval for Lisa to receive hyperbaric treatment here at St. Joseph Medical Center sometime in November to December.

Some family and friends have felt that their inability to be with Lisa for a variety of reasons might have been responsible for the setback in her recovery. Nothing could be further from the truth. Lisa’s downturn began when she was surrounded by family; mother, step-father, uncle, nephew, father-in-law, mother-in-law as well as her son and husband.

Of course, the absence of all of these folks and other family and friends at one time or another has no more worsened Lisa’s condition than their presence was the cause for the downturn starting or their absence was the cause for her recent improvement.

The fact is that Lisa has suffered a very serious injury and its impact, assessment and treatment require medical interventions like adding clonodin to her pump. Family and friends can strengthen these interventions through prayers and support for those providing the care and my efforts to make the right decisions, not distress (or worse) over their own absence.

Well, it’s now Sunday evening. Lisa, Michael and I spent most of the day outside in the lovely courtyard here in neuro rehab enjoying the marvelous weather. Michael can now stand on his own holding himself up with only one hand leaving the other free to grab and destroy anything in reach. The staff, other patients and their families are quite taken with his ability to speak his mind. He frustrated my “cry and we leave” policy in Mass last night by just amiably “chatting” but never crying during most of the service. Our friends and Lisa’s Rangers Bruce and Laura were ready to safeguard Lisa during the Mass but their ever ready service wasn’t required..

Father Milt is more than understanding. Earlier, when Lisa and I were working out all this, she’d been willing to have the policy of “cry and we leave church” as long as we followed her policy of “we go to church”. When Lisa and I started dating she was attending the Crossings in Oklahoma City, long since having abandoned the church of her youth.

We both want to raise out child in a religious home. We’d run out of time for the classes to have the Catholic wedding we had originally planned. We’d bought all the books; it was my fault I didn’t get with a priest in time. But Lisa wasn’t letting me off so easy with our son. We’d asked our friends Jack and Napua Davis to be Godparents and we’re expecting Michael to be baptized here in St. Joe’s in November. Lisa will be pleased, I’ve kept my word.

Lisa today, October 4, 2006

2006-10-04T00:16:00.000-07:00

Neuro rehab, barrow neurological institute, st. joseph's hospital and medical center, phoenix, az

I'm happy to report that Lisa's had the best few days in therapy she's had in months. For the first time since Lisa's spasticity got out of hand in mid-may requiring the implantation of her baclofin pump, Lisa was able to initiate slight but oh, so encouraging, volitional movement in her legs on Friday and again today. Also, Lisa's new physical therapist Rosemary and I both felt and observed Lisa respond to a request to turn her head to her right (against the pull of her spasticity) with a slight but perceptible turn. While Lisa's still not able to again consistently blink or nod yes/no answers yet, and she is still far stiffer than she was before her spastic quadriplegia struck, these are very promising gains.

I'm like you; I've gotten spoiled by my dad's postings. Even when I've written the update, I've forwarded it to him, he purtys it up and posts it so that I can send it while still in Lisa's room in at bni. Since he won't be back till the end of the week I've had to wait till I'm back in Tucson and on his computer to post the good news from the last week.

Several factors have contributed to this small but significant upturn.

First and foremost, Dr. Kwasnica's groundbreaking strategy of adding clonodin (I'd originally understood it was clonopin) to Lisa's baclofin pump has begun to help her more than the baclofin alone. Dr. Kwasnica ordered Lisa's pump meds increased another 10% on Friday. This is consistent with Dr. Kwasnica's strategy to "find the ceiling" where Lisa will hopefully get relief from her spastic quadriplegia through these meds.

Lisa's muscle tone has risen and fallen based on whether she's sick or uncomfortable. So, it was also important that last week Lisa completed the course of antibiotics to clear the most recent infection in her lungs. This permitted the removal of the pic line (the souped up IV line dad's previously described).

While Lisa is breathing room air on her own, the mini-trach inserted several weeks ago is now available to help protect against further infections. More than just another "hole" in Lisa, this critical device is currently capped, and doesn't prevent Lisa from speaking when her condition will permit. In fact, no longer "stuck" in silence, Lisa has been vocalizing more in recent days, mostly when startled and when stimulated but still using her vocal cords again.

Contributing to Lisa's comfort and rehab, she also had the most recent serial casts removed from her feet and ankles last week. Reece the Zen serial caster had once again done his magic and gotten Lisa's feet and ankles close enough to a neutral position for her to use the standing frame in her tennis shoes again. New splints are being custom made for Lisa by Sam, the Reece of spring loaded splints (called AFOs, I know it's adjustable something orthotics, I keep forgetting the "f"). Sam made the splints Lisa has been using, but as her feet now turn in as well as down, the original AFOs put too much pressure on the thin skin on Lisa's feet (who knew Lisa had anything but thick skin?). With an extra hinge or spring, the new splints should offer forgiving resistance against the spastic pull. Before leaving though, Reece did put a new serial cast on Lisa's left wrist to prevent it from developing crippling contractures. Based on how well she slept over the weekend, this cast was much more comfortable for Lisa than the wrist and arm splints it replaced.

So what was the result of these positive developments? First, Trent, Lisa's caring and steadfast occupational therapist, reported Lisa had been initiating volitional movements in one of her arms for him. Trent wants to see more before he calls it a trend, but it's a good sign.

Next, in Lisa's physical therapy with Rosemary, Lisa's new and enthusiastic physical therapist, big little things happened. Rosemary's hair is red like Lisa's and her flattening vowels like pancakes reveals her to be a Chicago native before you ask. Rosemary scored points immediately by talking with Lisa's therapy crew from up at select to see what Lisa doing before the spasticity kicked in. Based on input from our friend Marty, Rosemary sought to get Lisa in a gravity neutral position to see what she could do. Adding a new trick to Lisa's therapy, Rosemary placed Lisa on her side and lifted her leg in a sling thus freeing her from limitations imposed by gravity and her muscle tone. Rosemary than asked Lisa to kick forward and she did. Several times. To make certain this was intentional effort, Rosemary asked Lisa to kick backwards and she did. Several times. Today, Rosemary told me Lisa was able to kick more times at her request. Increasing stamina is another good sign.

Rosemary also got Lisa back into the standing frame dad's described in earlier updates. This thing raises Lisa up from a sitting to a standing position permitting her to bear weight on her legs, feet and ankles the way God intended. Wonderful stuff for fighting spasticity and contractures. Lisa's heart rate was steady, she was alert and it was while I was standing behind her holding her head upright she turned her head right at Rosemary's request. I felt it, but didn't say anything so I wouldn't be accused of crazy husband stuff when Rosemary said, "I'd swear Lisa turned her head!" I know frequent readers remember this is how Lisa was communicating with us before the spasticity got out of control, so again, a good sign.

Our friend Yolanda stopped by on Friday as she does through the week and helped Lisa with her range of motion exercises. She feels the tightness but also feels the improvement. Yolanda's a pretty special person, we met her while she was a rehab tech up at select, and after she left up there I asked she continue to work with Lisa. Despite having recently diagnosed serious illness in her household, her love for Lisa has led her to become an important member of our family. Her efforts along with Lisa's Rangers have kept Lisa limber enough to participate in Rosemary and Trent's therapy. I hope you'll keep her and her family in your prayers.

On other fronts, we're still waiting for the internal review board to consider Lisa's doctor's requests to use st. joe's hyperbaric chamber to treat Lisa. Before we re-name them the eternal review board, I remind you we're not ready for Lisa to get hyperbaric until we see where the new pump mix gets us.

Lisa will receive a pretty sophisticated test today-Wednesday-to determine if in fact she has excess fluid exerting pressure on her brain. I mentioned in my last update that relief of pressure, if it's there, can produce some improvement in some patients. As promised, Dr. Theodore stopped by and visited with me about the procedure and the unique limitations he and his colleagues are working with because of Lisa's defibrillator and the level of baclofin Lisa's receiving in her cerebral spinal fluid. This test they've settled on will tell Lisa's doc's what they need to know safely and soon. I'll keep you posted.

I must say though that Dr. Theodore is something else. He's a brain surgeon who looks like he could have played linebacker in college. But, contrary to what I expected, he's soft-spoken, incredibly patient and thorough with his explanations and makes it clear he has spent some real time thinking about Lisa as a person, not just a patient. There are many blessings we've had along with the bad stuff but certainly, starting with Dr. Kwasnica, who got us here in the first place, the humanity in addition to the competence of Lisa's doctors, therapists, nurses and aides continues to gladden and humble me.

And just to round out the good news, Maggie the wonder dog has bounced back from her first round of chemo for her lymphoma and is doing great. Our great neighbors, Jim and Ann, nursed Maggie while I was with Lisa and fed her meds in braunshwieger (sherry's disgusting but effective suggestion) and they are going to bring Maggie up for a visit this weekend.

The remission of Maggie's cancer is just in time, Lisa's favorite nephew; Colin and her sister-in-law Suzanne are coming for a visit for Colin's birthday and our wedding anniversary this weekend. Dad and Sherry will be back with Michael from wrapping up their affairs in Illinois to officially start their new lives with us in Tucson, so after a strenuous week in therapy Lisa will be able to spend time with kids, kin and canine, a combination that's hard to beat. r

Lisa update September 21, 2006

2006-09-21T23:16:00.000-07:00

Hey gang, you'll have little difficulty figuring out from the ugly appearance of this post that this is richard, unaided by my dad's purtifying efforts, here to give you the mostly positive news from today.

Dr. Kwasnica confirmed today that the worsening of Lisa's spasticity has stopped since she's begun the new mix of meds in her pump and that she's showing definite signs of improvement in the rigidity that has plagued her, not enough yet to get her back to actively participate in therapy but at least heading in the right direction.

The fear I expressed to you all earlier this week about Lisa being prematurely discharged appears to have been resolved as a result of Dr. Kwasnica hitting a trifecta for Lisa today by getting the adminicrats, the insurance company and the other doctors on the same page for Lisa's treatment plan. Lisa will remain in neuro rehab while her current medical issues resolve (she's quickly beating back another infection under the careful care of our favorite bug doc, Dr. Kume) and continue here until Dr Kwasnica is satisfied she's getting the pump mix to an optimal level for Lisa. Next, Lisa will remain in BNI while she completes enough of the hyperbaric treatments to get an idea if they're going to help, 20 to 40 sessions probably 3-6 weeks. Again, this assumes Dr. Fracica is successful in obtaining approval from St. Joe's internal review board for the hyperbaric as I discussed earlier in the week.

Dr. Kwasnica has also continued to consult with other colleagues for other treatments to help Lisa. Dr. Kwasnica has told me that Lisa's downturn is the result of the profound injury she's suffered. One possible contributing factor in that injury may be a slight increase in pressure in her brain caused by fluid replacing the space left by dead cells her body has discarded. Scans show any increase is small but possibly enough that if relieved might lead to an improvement. Dr. Theodore, the neuro surgeon who implanted Lisa's pump, will be briefing me in on this in more detail and on treatment strategies to relieve pressure if it's found. Dr. Kwasnica advises that this condition is common in serious brain injury cases and medical research shows that successful treatment can bring improvement in the patient. I'll keep you posted.

Dr. Kwasnica spent 45 minutes with blue cross's medical director, an old colleague of dr. k's, bringing him up to speed on Lisa's condition and progress and pressing him to do the right thing on covering the cost of the hyperbaric. While he's reserving judgment on that he agreed that Lisa needs to stay under dr. k's care till we've had a chance to get her medically stable and work through these anti-spasticity strategies. Everyone is now in agreement that if Lisa does respond to this game plan and can take advantage of the rehab crew at BNI that we'll gladly jump back to the beginning and put her to work.

We'll also begin serious discussions and planning if Lisa doesn't respond to these therapies. As I mentioned earlier in the week, the neuro rehab staff will help us plan home modifications and training to care for Lisa while she continues her recovery, whether that's in another rehab facility without the acute medical care Lisa won't need or here at home. Some have suggested I consider looking at insurance options other than my liquor store robbery plan, and, in the interest of keeping my options open, I'm prepared to include this in my ever-expanding list of things to do.

For those who've been spoiled by your regular reporter/editor, Dad is driving back to Illinois; Sherry is flying with Michael where they'll close on the sale of their home of the last 25 plus years so that they can make the permanent move to Tucson to help with Michael and Lisa after she's ready to come home. They've also abandoned their intended retirement plan of driving their recently purchased motor home (think aircraft carrier) around the country; it's going up for sale when they get back. Dad and Sherry have purchased a small but cool place that is being built nearby that'll be ready in November so the sale of the Illinois home is just in the nick of time.

I don't have good words to describe their good works. I appreciate all the kind things folks say about what I'm doing, but I've gotten the benefit of being chosen by the best person I've ever known to be her husband and the father of her child. I have to do these things because I'm the only one who can make the decisions Lisa's choosing me means I have to make. But, for me to do anything for Lisa, I have to have….time, time to meet and talk with doctors, nurses, therapists, nurses aides, family members of other folks with Lisa's type of genetic condition and injury, insurance folks and laboratory representatives to gather information, seek advice, form opinions and strategies and then implement them. I have to have time to read medical journals and other publications that help me understand what'll help and what the heck these docs are talking about. I have to have time to do these things and the other stuff only I can do- work, pay bills and spend the time a husband and father gets to spend with his wife and son to be a family, even if it's in a neuro rehab room. This simply doesn't leave time for a lot else. The family and friends who've put aside their own time-consuming agendas, needs, opinions and judgments and chosen to simply ask me "what can we do to help?" and then done exactly what they promised are the real heroes for Lisa and Michael.

So, thanks to all who are helping me help Lisa! r

LISA TODAY – SEPTEMBER 17, 2006

2006-09-18T18:47:00.000-07:00

Barrow Nurological Institute – Phoenix, Arizona

Hey gang, Richard here from Lisa's room on Sunday evening. It's been an eventful several days for us with some good and some not so good stuff. But in keeping with our practice of laying it all out there, here's the latest:

The good: Lisa's team is slowly resolving the difficult task of balancing her needs for nutrition, digestion (and all that …entails) and therapy. The result is that she isn't having therapy interrupted by accidents that rob her of valuable therapy time. I could see proof of the improvement in doing her laundry last night. The last several weeks have just been a mess, but this week it was just laundry. By the way, thanks to Melody, Karen and CJ for giving me the idea (really, permission) to roll her therapy pants rather than fold them during their visit last weekend, it really helps keep her shelf neat and organized.

Also good: as soon as Lisa finished her course of antibiotics last week, Dr. Kwasnica started her on a new mix of medicine in her pump. As frequent readers will recall, Lisa has a pump implanted in her abdomen which bathes her spinal cavity (the intrathecal space) with medicine. Until now, that medicine has been Baclofen, the leading drug for controlling spasticity. Because of its side effects (drowsiness, constipation) when taken orally, the pump gets the medicine where it needs to go with much smaller doses, hence much less of a problem with side effects. The new medicine, Klonopin, also has a proven track record of helping with spasticity and Dr. K's hope is that the two together will work better than either alone.

After just a few days, Lisa's therapists are reporting the steady rise in rigidity has stopped and Lisa's muscles seem more relaxed. The facial contortions Lisa had been making have pretty much disappeared and she's clearly resting better. Still, it's too soon to tell much, but hopefully the flood has crested. Dr. K is pleased but is taking it easy in increasing the dose so she can make sure Lisa's blood pressure stays up where it needs to be. She believes over the next 2-3 weeks we'll be able to see where the new mix will take us.

Lisa also received a consult from Dr. Holly Shill, dad her mentioned last week. After sharing her opinion that Lisa's muscle rigidity is coming from spasticity not dystonia, I asked if she had other suggestions on helping Lisa. Dr. Shill offered to go back and take another look at Lisa and, after visiting with Dr. Kwasnica, she gave Lisa several Botox injections intended to help relieve the stiffness in her neck that causes her to tilt her head to the left. It will take about a week to see the effect, so stay tuned and we'll keep you posted.

Even more good: as each of the "tried and true" therapies have come up short, more experimental ones become more attractive. Chief among these is hyperbaric, as dad described in the last update, treating anoxic injury and spasticity with pure oxygen saturating the body under pressure is proving for some to be helpful. Because it is experimental, insurance coverage is something we won't know about till after the course of treatment and St. Joseph's won't let us use their chamber without jumping thru hoops. The first was (big surprise) money. Because, Blue Cross won't pre-approve experimental treatments, the hospital is requiring us to pre-pay in order to make sure they don't get stiffed. Fine! Blue Cross has been (I am not kidding) wonderful for us. They've been honest, responsive and fair from the get-go. When we needed to get Lisa on the helicopter to get to Phoenix's Arizona Burn Center to save her life from the Stevens-Johnson syndrome, they told me to just go and we'd work it out- and we did. When they told me they couldn't pre-approve experimental genetic testing to determine if Lisa had the genetic condition that would explain her (and her father's) sudden cardiac arrest, but they'd review the claim for "medical necessity" and would be fair, they did and were. So, while I'm not sure how much we're going to have to pre-pay (and thus how many liquor store robberies I'll have to pull) I trust Blue Cross to be fair. In any event, Lisa's going to get the opportunity to benefit from hyperbaric, regardless of who pays; I just want it to be here where we can evaluate its results with her gnarly crew of therapists, so on to the next hoop.

Once the money issue is (kind of) resolved, we have to get the support of Lisa's doc, Dr. Kwasnica and the pulmonologist who runs the hyperbaric program Dr. Phil Fracica. I met with him on Friday, though we'd talked earlier in the week. He'd given me a 200 plus page homework assignment- the federal government's review of the evidence supporting hyperbaric for different types of brain injury. I'd read summaries of it and other research, but Dr. Fracica (pronounced fraSEEKa), wanted to make sure I was clear on how unclear the literature is on the benefits for Lisa's type of injury. The bottom line is that this wouldn't be our first option, but it can't hurt Lisa and it has definitely helped some folks. Once he was convinced my expectations were in line with the research and that I wasn't going to rob a bank to pay for it (he didn't ask about liquor stores) he told me he'd support our application to the (next hoop coming) the St. Joseph's internal review board.

The internal review board must approve experimental uses of the hospitals stuff which this would be. They meet every two or three weeks so hopefully, with the money thing cleared and doctor's support, we'll soon get a green light.

So what's the not-so-good news? Well, attending my meeting with Dr. Fracica was an administrative person, who was interpreting Dr. Fracica and Kwasnica's opinions to support her conclusion that Lisa would need to be discharged in 2-3 weeks! Don't get me wrong, we love these folks and they've made us feel at home, but we want to leave here not live here. Still, the deal we have is that Lisa will get the opportunity to benefit from available treatments and therapies to break through her spasticity and to begin rehabilitation in earnest. Plan A (Baclofen pump at 700-900 micrograms per day) didn't work, so we're on to plans B and C. If they don't work, I'm not giving up but I'm not expecting Barrow Neurological Institute (BNI) to try herbal remedies and acupuncture. If they do work, then I expect us to get to work with the staff as we had planned before the spasticity kidnapped Lisa's recovery. So, we'll begin discharge planning, outlining home modifications, etc, but for the next couple of months I intend for us to be here working to break the grip spasticity has on Lisa.

I simply can't let "adminocrats" or anyone else keep Lisa from getting the best chance for the best recovery she can make. I am surer than ever that we have the best doctors, nurses, rehab techs and therapists in the world working to this end. Lisa has the support of her rangers who visit every day; Yolanda, our friend from select who now provides the skilled range of motions exercises during the week and Michael the archangel who looks more like his mother everyday and spends the weekends making certain I, along with everyone else here is taking every effort to get his mom home well.

I am here in Lisa's room, it is a little past 9 p.m., and she and Michael are sound asleep. I'm thinking of those working here at BNI have a big week ahead of them—as do we all. Please continue to keep us in your prayers and thoughts, including Sherry, whose help with Michael and running our house has made my efforts possible. Her recovery from the angioplasty and stint has been remarkable but not easy. Also, Maggie the wonder dog, holding her own against lymphoma, so she can still be Lisa's favorite girlfriend. I didn't know dogs got cancer, had their own oncologists and respond so well to chemotherapy but now I do. The treatments aren't a cure but can, and are, buying time and quality time at that, so please send a kind thought--a good dog's way. r

Posted for Richard

(Picture is of Yolanda with Michael)

Michael

mlwintory@msn.com

LISA TODAY - 13 SEP 2006

2006-09-13T16:28:00.000-07:00

Lisa Anne Wintory
Today – September 13, 2006

Lisa is a patient at the Barrow Neurological Institute (BNI) in Phoenix, Arizona

Let start by telling you that try as I may, I’m having difficulty not turning this into a Soap Opera, having said that… Wednesday was indeed a big day for Lisa in that, her proxy and next of kin Richard, met with Lisa’s medical team. They were there to talk about her life and future at the BNI. The meeting on this day was less than routine, which is not what one would expect, considering the familiarity among those in attendance. Familiarity brought about by, the teams frequent one on one contact with Richard, months of similar meetings, and the unified cooperation between the participants. The room was same; arranged in the same manner, but there was unspoken tension before the meeting began. It room seemed electrified by the participant’s apparent nervousness. This meeting was all business, with bare cordialities expressed, and it started with a rifle shot. The doctor’s tone was all business when she announced the purpose of the meeting: Lisa’s medical status. And, right away stated there is a limit on the time she had for each of her patients; further there is limited time that the staff can give as well. With Lisa is losing ground to Spasticity her pain level has increased, and (consequently) she has begun tracking less with her eyes. The time consuming hold that her recovery from bronchitis took has delayed the next phase of her treatment plan. So why? Let me ask you if you have ever eaten something that didn’t agree with you or been on a medication that gave you unpleasant side effects? Maybe you got an upset stomach and were nauseated or worse. Maybe you got intestinal symptoms with cramps, difficulty going to the bathroom or the opposite of not being able to leave the bathroom. We’ve all experienced those symptoms in our lifetime. You would certainly talk to your doctor about changing your medication, changing your diet; maybe, drink more water or almost anything to avoid these symptoms. Such is the plight of Lisa in the midst of battling the spasticity. Her tub feedings must be adjusted to deal with her symptoms. Other medications are added to her course of therapy that has made it extraordinarily difficult for the physical, occupational and speech therapists to work through, and also if you can put yourself into Lisa’s place then think about how she must feel being totally unable to communicate or have the benefit to express how she is feeling.

The additional drug which was intended to accompany Lisa’s Baclofen therapy was Klonopin (clonazepam). In some patients Klonopin it is known to reduce muscles spasms or stiffness, and in combination with Baclofen may reduce Lisa’s muscle symptoms. The (hopefully) dynamic duo of Baclofen and Klonopin may be the magic bullet to knock her spasticity down. Klonopin is already in Lisa’s treatment plan, and it is sort of old news; but what is in today’s news is that Klonopin has now being administered.

Richard has had discussions with Dr. Kwasnica and others at Barrow Neurological Institute (BNI) about using BNI’s hyperbaric chamber as part of Lisa’s therapy. The chamber is managed by another department in the hospital, and is under the direction of another physician. The hospital also has an internal review board that must approve the chamber in Lisa’s case. There is antidotal evidence that suggest the hyperbaric chamber can be useful to Lisa’s well being. The F.D.A. has not approved the chamber and therefore its status remains experimental. The hospital wants prior approval from Blue Cross/Blue Shield that they will pay for Lisa to receive hyperbaric treatments. So for two or more months there have been many conversations between Richard and BNI physicians, and administrators to get it approved. Finally to break the stalemate, Richard offered to pre-pay the cost for the therapy, and asked, “Who do I make the check out to?” “We’ll get back to you on that this Friday,” someone said. The problem again is that the treatment is considered experimental because its effectiveness has not been proven; however, there are recorded cases where it has provided relief in cases like Lisa’s and Richard told the doctors I want her to have the opportunity, every opportunity to get relief from Spasticity.

The theory is that hyperbaric therapy helps oxygenate the brain, and might help to revive some of Lisa’s neurons that may be only “stunned or injured.” With hyperbaric, oxygen can get through the blood brain barrier to reach parts of the body that do not have good blood flow. So, the therapy might fire up idling neurons, or neurons which are not dead. With a bit of luck, Lisa’s rigid muscles will relax through the brain regaining its ability to tell Lisa’s muscles to “lighten up.”

There are BLOGS and Bulletin Boards on the Internet which provide information about anoxic injuries. Richard has been interacting with some of the authors of these web sites who have reported on their own or a close family member’s story. It has given him great insight into Lisa’s situation, and enabled him to talk with people whose own loved-ones have benefited from hyperbaric treatments.

Finally, it is agreed by all concerned that hyperbaric therapy can do no harm, and the reluctance of the BNI hyperbaric department to proceed is that it, “may not be effective.”
Last week Lisa was evaluated by Dr. Schill who is an expert in the diagnosis of dystonia, and a condition that she was suspected of having. Dr. Schill reported to Dr. Kwasnica that in fact Lisa does not suffer from dystonia. So that closes the chapter on that.
In concluding the meeting on Wednesday, we learned that for now, Lisa will remain at BNI that the staff is wanting more progress, but then don’t we all.

Last Friday Melody Nelson, her sister Karen Mitchell and CJ Murphy all from Norman and or Oklahoma City flew to Phoenix and Lisa for a “Girls Weekend.” And what a weekend it was, Karen, who has a gift for interior design took a picture of Colin and Rylee Goodspeed and their cousin Michael and had it blown up to poster size; then she got a St. Joseph’s maintenance man to stick it on the ceiling right over Lisa’s bed. So every time Lisa looks up she has a living color, life size portrait of her three favorite people, baby Michael and his cousins Colin and Rylee. C.J., Melody and Karen also rearranged the decorations in Lisa’s room, and scolded Richard on the lousy clothes folding he’d been doing, then praised him for the excellent wardrobe he assembled for Lisa. Then, Melody exchanged baby Michael for Richard, and sent Richard packing; so around midnight Friday, Richard arrived home and when he woke, he fired up his Oklahoma Smoker and started working on pork shoulders, brisket and roasting hens. If you have not smelled pecan wood smoke, and/or tasted the results, let me be the first to tell you that it is a sure ticket to start your saliva glands working overtime. It smells great, but not a great as the final product. Richard delivered a wonderful feast to the on-duty staff at BNI on Sunday, and better still Sunday late afternoon he got to introduce all of Lisa’s Rangers to Melody, Karen and C.J., as they got to enjoy Richard’s wonderful meal. Lisa’s Rangers are at Lisa’s bedside every Monday through Thursday: Sandy Janzen is there Monday, and Bruce Bower and his wife Laura Recker are with Lisa on Tuesday’s. (It was Laura who we went to Mass with in June.) On Wednesday’s it’s Suzanne Cohen and Bill, and then on Thursday Ken Vick and Vince Goddard are there.

This part is about Lisa’s dog Maggie. Maggie is eleven, and was being treated for a heart condition by a local vet. I noticed that a cough she had was becoming persistent so the vet examined her and subsequently diagnosed her with lymphoma. Richard then had another decision to make, and he chose Life. Life for Maggie. He asked me to take her to a veterinary oncologist, and there Dr. Klein prescribed chemotherapy that, I must tell you, Maggie is responding well to. She has maintained her weight, and her hair (in case you were wondering), and I think she believes the peanut butter I hide her medicine in is a treat to be enjoyed 2-times a day. And, yes our Scotties, Mac and Tosh get in on the peanut butter too.

Sherry took the opportunity to visit her Mother Beverly in E. Hampton, Connecticut. Her nephew Josh was getting married and she and Kris her daughter from Decatur, Illinois went to the wedding also. On the return flight through Dallas/Fort Worth, she experienced “exertion chest pain” from rushing through the terminal. It chest pain reemerged at the Tucson Airport. A heart stress test was scheduled, which as you might expect she failed; so an angioplasty was scheduled at Tucson Medical Center. A coronary artery was discovered to need a stint, and after it was applied she was good to go. A follow-up stress test is scheduled for 15 Sep, but she feels just wonderful. I expect her to pass this go-around with flying colors.

We received the good news that our house in Illinois has found new owners. Sherry and Michael are flying back September 22nd. I will drive so can bring Mac and Tosh (the two Scottish Terriers) with me. There is some unfinished business that Mac & Tosh want to take care of, namely a taunting Fox Squirrel, and a stray cat or two that wander across the back yard fence. It will be a fun drive back to Illinois. In case I have not told you, our new Arizona home is being constructed for us on Dove Mountain in Marana, Arizona. We purchased a residence at Heritage Highland Gateway at 5358 West Arid Canyon Drive, Mariana, AZ 85653-4067. It is an “active adult community” with many of the amenities Sherry was looking for. We expect it will be ready for us not-later-than the end of November. We’ll be 9.5 miles from Richard and Lisa’s residence.

I used to work for a gentleman, Jack Ennis, in Galesburg. Jack used to tell his employees, “just because you found a job, don’t stop looking for work.” Jack’s humorous expression comes to mind when we recently went shopping for furniture and appliances. It’s not like we haven’t enough to do.

Warmest Regards from Arizona,

Michael
mlwintory@msn.com

LISA TODAY – 5 SEP 2006

2006-09-05T20:40:00.000-07:00

Richard and Lisa, were married October 9, 2004 at the Hilton resort hotel in Oro Valley, Arizona. Together, while holding hands and peering into each other’s eyes they solemnly said to each other, and before family and friends, “…in sickness and in health…” Richard would say later, “we were all about that… commitment.” No one there, least of all Richard and Lisa realized the test that was in their future. The drive from Tucson to Phoenix, and Lisa’s bedside takes a few minutes less than 2-hours. For Richard and baby Michael the drive has become a ritual that these two faithfully engage in on Fridays. This past Friday, they found Lisa resting comfortably. It was good to see her regaining some stability from the recent problems she encountered with bronchitis.

Lisa’s therapist resumed working on range of motion and it is a deliberately slow process as the faster her limbs are moved the more severe her tone becomes and the reverse is true; very slow motion the pain is less. It is the nature of Spasticity.

Lisa’s mind is also being exercised it is done with photographs of Michael and Richard being moved around the room so that Lisa can track them with her eyes.

I reported to you that a new drug was going to be given to Lisa in addition to the Baclofen to combat the Spasticity. It has not yet been administered because of the pneumonia and bronchitis Lisa needed to overcome. So, I’ll tell you more about this as it develop.

Wednesday is a big day for Lisa. Her medical team will meet with Richard to strategize Lisa’s treatment plan. Job One is to break the hold Spasticity has on her. We know Lisa is alert and aware, but unable to communicate--unable because of Spasticity, and more about the meeting later.

Michael mlwintory@msn.com

(The two pictures: Lisa and Richard on their wedding day and Lisa with Maggie who is now 11.)

Lisa Today - August 13, 2006

2006-08-13T20:38:00.000-07:00

Hello everyone, Richard here from Lisa’s temporary room on one of the “telly” units here at St. Joe’s. Lisa will be back in her room at BNI’S neuro rehab tomorrow (Monday) morning with an old ally –her trach- protecting her from opportunistic infections that would delay her recovery.

Lisa’s continuing struggle with spasticity developed a new complication that called upon the many medical resources here at St. Joe’s. With Lisa’s muscles so rigid, pain and medicine for that pain necessarily follow. Despite the efforts of Lisa’s caregivers, her bowels became impacted, most likely from the pain medicine, resulting in nausea and vomiting on a couple of occasions. Lisa inhaled or aspirated during one of those episodes, drawing the bacteria- laden material into her lungs.

With her spasticity also preventing Lisa from protecting her airway, her caregivers were ready to respond to the next threat, infection. Lisa’s pulmonologist, Dr. Wright, and her regular guardian angels, Dr’s Bliss and Kwasnica, recommended Lisa get her trach back. They explained this will make keeping her lungs clear from secretions (like those caused by allergies) or other aspirated material safer, easier and free from the trauma of having to run a tube up her nose, down her throat, past her voice box before reaching her lungs. This was done without a hitch on Thursday.

Next, the team was ready for the inevitable infection from the aspiration with powerful antibiotics targeting the specific bugs before they had a chance to do damage. To manage the process, Lisa’s doc’s moved her to an ICU bed where her condition could be closely monitored.

The ICU staff was really wonderful and welcomed us with warm compassion and clinical expertise. Normal restrictions were waived and I was permitted to be with Lisa overnite in her tiny, equipment jammed room. Michael won rave reviews when I taped up pictures (he couldn’t come into ICU) from his recent visit with his Oklahoma relatives and Godparents Jack and Napua.

Dr. Kwasnica kept Lisa’s neuro rehab room for her so we didn’t have to pack and unpack; a huge blessing for the organizationally challenged.

By Saturday, Lisa’s infection was under control, her numbers were all good and she was ready to move out of ICU and into a unit where she could be monitored (with telemetry, hence the nickname “telly”) until Monday morning when neuro rehab opens again for admissions.

As pulmonologist Dr. Wright says, “No more rehab days lost to preventable stuff.”

What’s next? We jump back into our fight with her spasticity. Lisa’s Baclofin pump is above the level we hoped would provide relief with her muscle tone improved but not enough to permit her to begin rehab in earnest. So, with Plan A not “gettin’ r done” Lisa’s team is putting together Plan B.

We’ll keep you posted, but be certain; the folks on Lisa’s team are caring for a lot of other folks in need. So, I am absolutely committed that 100% of the time that Lisa’s team has to work at getting Lisa better will be spent on that and that alone. I’m grateful for the understanding that nothing must distract or delay getting Lisa past this obstacle and firmly on the road to rehab. So, I look forward to answering (or getting answers to) any questions about Lisa’s care and conditions from all the many who love her too.

I know Lisa’s ready to get back to work in rehab when we find the right mix of medicine and therapy, whether it’s inside the box or outside of it. Helping find and fund that right mix is my Job #1 so, please keep us in your thoughts and prayers. Richard. wintoryok@hotmail.com

LISA TODAY – 05 AUGUST 2006

2006-08-05T10:46:00.000-07:00

Two Happy Guys

It was a happy reunion for his Uncle David, shown here with his nephew Michael as they recently got together for a brief family gathering in Oklahoma City. Auntie Suzanne, and his Cousins, Colin and Riley were there too to get in on the fun. It was more than nice as Godparents Jack and Napua Davis made the arragements and provided sumptious refreshments for us all.

What is more fun that a pile of kids jumbled up on a bed?(L to R) Riley, Colin and Michael would say: "NOTHING!"

What's New...
Lisa finally has reached the 1,000 Microgram dose of Baclofen which is ever-so-slowly and carefully being administered. The dose is now at the level Dr. Kwasnica expects Lisa's Spasticity will loosen its grip on Lisa. She recently has become noticeably more alert and regained her ability to respond with "good eye blinks." noticeably
Richard has become a studious hospital fashion buyer. Talking with hospital staff and others, he has learned that, for patient Lisa, a sports bra and stretchy bike pants are most comfortable. This rules out "shorts" as this type of garment tends to creep, and you know we all hate that, do we not?
Speaking of cloths, it may have occurred to you that someone must launder her personal clothing, you may even have wondered, who or how does it get done? Suzanne Cohen, who ranges Lisa on Wednesdays has also stepped up and taken on this additional task. Now I don't want to shock you, so step back-get a drink and, well listen to this: Richard does Lisa's laundry on weekends. In fact, he has become a "Tide" maven--even separates the colored items from the whites--folds them right out of the dryer, and even... talks the talk with others about laundry stuff. What's next for the wonder boy? Ironing? Yeah, as if!

This is a picture of Trent. Trent is Lisa's Occupational Therapist.... Great Guy!

Meet Tom! He is Lisa's Physical Therapist, and is shown here with one of Lisa's $4,000 ankle splints. It's made just for Lisa.

Sherry, Michael and I will drive up to Phoenix this afternoon to see Lisa and Richard.

Till next time...

Michael - mlwintory@msn.com

LISA TODAY - 23 JULY 2006

2006-07-22T19:42:00.000-07:00

How’s Lisa doing? July 19, 2006

I wish I could find the words to describe for you the skill, commitment and compassion of the “purple team” working to give Lisa the best chance to make the best recovery she can. While I’ve met with each of Lisa’s team members individually, and they meet each week to staff all their cases once a week, today, July 19, 2006, was the first time the whole gang gathered to discuss where we’ve been and where we’re going.

As I mentioned in my last, very wordy, update, by the last week in June, Lisa’s body and progress had been locked in the grip of Spasticity. Lisa’s ankles had turned almost completely over, her chin is thrust forward and upward and pulls to her left shoulder. She’d lost many of the hard-won gains she’d made including her ability to nod and blink answers to questions, shift her weight in the standing frame and move her arms and legs slightly but freely.

Lisa’s team, (each of the rehab teams is identified by color, Lisa’s is purple) beginning on Monday, June 26, launched a full-scale assault on this enemy. The attack has 4 elements: increase her Baclofin amounts, use Botox on her most vulnerable joints and with the gains made possible by the Baclofin/Botox, use a series of casts to get Lisa, literally, back on her feet. Aggressive range of motion exercises and stretching both protect her from crippling contractures of muscle and bone as well as measure and extend the progress Lisa is making as Baclofin slowly melts the icy grip of Spasticity.

Because nothing in Lisa’s recovery is simple, the efforts of her team have been hampered by a problem that has plagued Lisa most of her life: allergies, secretion-causing allergies. The secretions collect in the bottom of her throat, and Lisa, unable to clear her throat due to the Spasticity, must work harder to breath. Her team consults with respiratory therapists. They help with supplemental oxygen when Lisa needs it, breathing treatments and removing the secretions by suction. A pulmonologist, Dr. Wright “bonks” some of the secretions Lisa inhaled into her lung and than assures Dr. Kwasnica that none of this should interfere with the teams’ continued assault on Lisa’s Spasticity, indeed, the sooner Lisa can protect her airway, the better.

With this green light illuminating the team meeting, each of Lisa’s “purple” therapists, reports. All detail how Lisa is slowly regaining ground lost to her stiff muscle tone. Each says that Lisa is beginning to blink answers again, is becoming more responsive and is able to-for brief moments in therapy- more freely move her jaw, arms, neck, and legs. Still the key word is “slowly”. Lisa’s overall condition is tight, each movement of each and every muscle requires varying degrees of pressure and causes an equal amount of discomfort.

Dr. Kwasnica decides after speaking with dr. Wright, to cautiously press on with Baclofin increases up to 700 micrograms a day (mg/d) - a tiny amount if administered orally, but when contained within the intrathecal cavity containing Lisa’s spinal cord, a pretty healthy amount. Dr Kwasnica believes Lisa’s will require between 700-900 mg/d to control her Spasticity, so the idea will be to see how Lisa’s system responds to this amount before increasing it again. The goal? Loosen the grip of uncontrolled muscle stiffness without impairing Lisa’s ability to control when she wants to stiffen her muscles as when she wants to move her limbs.

Next, the team discusses new therapies and a decision is made to get Lisa back into an environment in which she thrives- the pool. Hydrotherapy is still classified as an “alternative” to traditional treatments, but one the team believes will benefit Lisa. There are logistics to be worked through but I’ve got her swimsuit ready and so, the following day Lisa’s back in the water. Freeing Lisa from the full effects of gravity makes it easier for her to move against her tight muscles. The session is declared a success and so will be the first of many.

Another alternative treatment- hyperbaric oxygen therapy (hbot)- is also kicked around. The idea is to place the patient into a pressure chamber filled with pure oxygen and increase the pressure anywhere from 1.5 to 2 atmospheres, about what you’d experience at 33 feet underwater. Treatments last an hour and are done a couple of times a day for as much as a month. HBOT is still considered experimental for Lisa’s type of injury but there are very promising results that have been obtained in individual cases. Dr Kwasnica, ever the optimistic skeptic, is reviewing the literature and consulting the handful of docs around the country doing what she does, to see if this is right for Lisa.

More about that last point: Christina Kwasnica, MD. is, officially speaking, a big dog. She doesn’t act like it (quick story- Michael and I stay with Lisa on the weekends. I try and feed him, take my shower and get dressed before the dayshift activities get started, usually by 6 am. The shower for our room is shared with the adjacent room so while you’re in there every sound carries. Michael will, especially when happy, make quite a bit of noise, so I’ve learned to try and shower while he’s sleeping off his first bottle to keep from waking the patient in the next room. One morning I turn off the water and hear Michael caterwauling in his crib. I panic but can’t go barging into “our” room without more on than I have at that instant. By the time I’ve dried and thrown clothes on, Michael’s quieted down. Relaxed myself now, I causally open the door to find… the program director for the world famous Barrow Neurological Rehabilitation Unit playing nanny to her patient’s son, rocking him in her arms back to sleep. Maybe this wasn’t a quick story still it’s illustrative of the point.) but she’s definitely a big dog within the fraternity (sorority?) of rehab docs. So, when dr. k say’s she’s consulting with her colleagues around the country about Lisa’s case it means we’re getting the best thoughts of the best minds in neuro-rehab in the country.

The next topic in the team meeting is Lisa’s morale. While possible problems with being aggressive with her treatment must be considered they must also be weighed against the certain problems of Lisa continuing to remain locked down by her Spasticity, chief among these is the certain frustration Lisa must feel. Keeping Lisa focused on her rehab requires constant and just as important, consistent confidence-maintaining support. The different sources of distraction and distress are discussed and strategies on how to avoid them are agreed upon.
Our goal is to establish a predictable routine, safe emotionally and physically, so that Lisa knows what to expect and what’s expected of her in her therapy sessions and is able to bring her full attention and efforts to bear on her rehab. The meeting ends with everyone on Lisa’s team clear on purpose, strategy and tactics.

It’s now Saturday, July 22, 2006. Lisa slept really well last night after secretions that had accumulated at the base of her throat were suctioned. She was so relaxed that she didn’t need the splints she normally wears at night to keep her arm straight or pain meds.

After working through all the more dire explanations for the secretions in Lisa’s throat, her docs are prepared to consider and treat her for post-nasal drip caused by her allergies. Medicines that we have at home, Claritin, Afrin and Flonase are ordered and with luck we’ll get her through this season with a minimum of discomfort.

I’ve got Lisa’s day splints on including her new ankle/foot splint for her right foot. The one for her left is still being tweaked by Sam the splint guy. Remember Reece the Zen serial caster from my last update? Sam must have gone to the same dojo the way he’s working over these custom-made splints to put just the right amount of pressure to protect the gains won with the casts without causing blisters or other skin breakdowns. Lisa’s physical therapist Tom wants Lisa wearing these 8 hours during the day and has walked me through how to put them on, check and remove them over the weekend. But for now I’ve just got one foot to splint and the other to stretch.

Lisa’s got therapy and a shower coming today than Mass at 5pm. Saturday evening mass here at St. Joseph's has been really special for us, and we’re looking forward for the time.

If you have questions about Lisa, I’m sure others have the same ones, so just pass them back to us and we’ll share the answers with everyone. Thank all of you again for your prayers, your support and your understanding. So many of you have sent or left messages, e-mails, cards and letters with the most wonderful thoughts and concluded by saying “ you don’t need to respond, you’ve got so much happening…” and I’ve taken you up on that too many times. So please know that while each of you deserves a thank you note for each of the many kind outreaches to us, I read everyone of these sentiments to Lisa. Our little family thanks God every day for each of you and prays for the time when Lisa can thank all of you personally. r

LISA TODAY – 14 JULY 2006

2006-07-14T21:17:00.000-07:00

“So how’s Lisa doing?” July 9, 2006

My dad’s updates have been such a blessing to all of you and to me as well. They let us all stay pretty current so that folks who visit the website or get updates directly, can, when they bump into or call me, just hear the latest to be up to speed. But dad thought aL more comprehensive review of where we are, how we got here and what we believe the future holds from my point of view would be helpful. Also, I wanted to open a q and a dialogue for folks to ask follow-up questions without worrying about how many others have asked the same thing. Our goal is to keep those who care, are offering prayers and support and are reluctant to “be a bother” to be as informed about how Lisa’s doing as if they were here.

At this moment, 12:05 pm on Sunday July 9, 2006, Lisa’s down the hall getting a shower with Kesha and Andrew. Michael is hanging here with me deciding –ooops Lisa’s back.

Ok, it’s 1:22. We’ve gotten Lisa dried, lotion applied, her hair brushed and positioned her using pillows and weights to try and push back from her becoming the pretzel the injured parts of her brain are trying to make her into. The process was delayed by Michael insisting on attention, formula and finally, thankfully, sleeps, next to his mom who’s now watching me write this for you all.

This day started like most days for Michael and me visiting Lisa at the Barrow Neurological Rehab Wing. Lisa’s room is about 30’ by 20’ with a big window looking out over a large, lovely courtyard with big shading mesquites, grass yard, flowering shrubs, volley ball court (never used) benches and seating around the courtyard and a porch area with misters to make the phoenix summer bearable. Opposite of the porch area are some planting beds in raised boxes used by the occupational therapists. Some habanera peppers are clinging to life with the indifferent watering they are receiving.

The wall along side these windows hosts Michael’s crib and the pullout sleeper chair where Michael and I sleep (welcomed interruption here for calls from Lisa’s brother David sharing some really great stories from their childhood (I’m sworn to secrecy) along with an update on Lisa’s niece and another call from my mom) for the portion of the week we get to spend with Lisa, usually from Thursday night to Monday morning depending on my work schedule. The “family friendly” approach dr. Kwasnica and Barrow Neurological Institute (BNI) rehab take to rehab has really helped us start building the life together that was so catastrophically interrupted on February 23.

Speaking of interruptions, this one is of the welcome kind: one of our many new friends, Ricardo, a chaplain here at St. Joseph Medical Center, just stopped by for a prayer and blessing. Ricardo’s wife recently had a major surgery from which she’s recovering creating an even greater bond than his genuine compassion and kindness would have generated. I decline communion since Lisa and Michael and I were able to go to Mass together last night for the first time since I got back from Oklahoma. Father Bill greeted us warmly and Michael repaid him with several out of the blue screams during particularly inopportune times during the Mass. By the time I jumped up he immediately calmed down... just long enough for me to sit down again. Little wonder Father Bill came to us to administer communion, he probably wanted us out of there before any more disruption! Just kidding, Father Bill was just wonderful about it, I’d always told Lisa we wouldn’t have one of the crying kids in Mass that I’d walk him out before he’d disrupt a service, which just prompted one of Lisa’s patented, “we’ll see” laughs. Obviously, she and Michael conspired to come with a “scream and stop” strategy that has just been the most recent in a series of humbling fatherhood moments.

Where were we? Oh, yeah, interruptions. I’ve changed a couple of diapers, started a load of Lisa’s laundry, and we’re “good to go again.”

So our little family started our day after a pretty restful night. Lisa’s nurse, Joni turned Lisa every couple of hours, kept her clean and dry and made sure her arms and neck were positioned as well as can done. Her arms now have enough flex that I could position them last night so that Joni gave her blessing to letting Lisa go without the splints which I’m sure contributes to her sleeping better. Still she needs pain meds to get through the night.

Michael usually is the first up around 5:30, I buy a few more minutes by stuffing the pacifier back into his mouth, this lets me shake up his first bottle of the day, the first of 4 so far (it’s only 3:16). I shower with him in the bathroom to keep him from waking Lisa (or the dead, he’s that loud), dress and push Michael around the corner to the hospital’s Starbucks where Sonny fixes me up. We then dress Lisa, and all go outside to enjoy the morning before the heat becomes too much.

This is Sunday and the only day Lisa has “off.” Monday through Saturday are loaded with the intense 6 a day therapy sessions (Speech by Debbie, Physical by Tom and Occupational by Trent), two hours of range of motion exercises by our friend and ally from up at Select Specialty Care Hospital, Yolanda. Then, on the days Michael and I aren’t here, an hour or so visit from one of “Lisa’s Rangers” our local friends who got Lisa through the early stages of our nemesis Spasticity with their range of motion exercises and now continue to look out for her at Barrow Neurological Institute (BNI).

Lisa also has regular visits from Dr. Kwasnica and Suzanne, her nurse practitioner, assessing progress and increasing the dose of Baclofen, kind of our David against the goliath of Spasticity. This is done with a computer and kind of a remote control placed over the place in Lisa’s abdomen where the Baclofen pump is implanted.

Lisa also gets twice weekly visits from Reece, the king of serial castings. Reece is kind of a Zen craftsman, medicine man reclaiming Lisa’s ankles from the grip of spasticity, which had turned them completely over, preventing Lisa’s therapists from standing her up for fear of injuring her. Reece spends 2 hours to create a cast that firmly moves her stubbornly twisted ankles without blistering her skin only to cut that cast off in a couple of days and do it all over again, claiming the ground he’d gained in moving Lisa’s ankles back to a neutral position. For Lisa and her therapists though, the benefit was immediate: Lisa was able to get back on her feet in therapy.

Twice a week, Lisa is woken up with a massage from Erin. These started as a Mother’s Day treat, but Dr. Kwasnica believes they’re so important to Lisa’s recovery that she’s encouraged (unsuccessfully so far) blue cross to cover them. No matter, Erin, along with Yolanda, and Lisa’s Rangers are in for the long haul. I’m of course leaving out the nurses and aides who fill in the rest of Lisa’s time with medicines, feeding her through her PEG tube, protecting her from infection and bedsores by keeping her turned and cleaned until Lisa can do these things on her own.

With all the activity, you might think Lisa would get lost in the shuffle; far from it. BNI is a place where people get better. Lisa is surrounded by positive, confident, competent professionals and friends who have rallied to her cause with program director Christina Kwasnica, M.D. leading the way. But I get ahead of myself, how’d we get here?

On February 23, 2006, Lisa was finally feeling well. She’d had Michael a couple of weeks before and had been sore after two days of trying to deliver him naturally and finally accepting her obstetrician advice and delivering him by C-Section. By the 23^rd her incision was healing nicely, her physician advised just earlier that day. Breast feeding had been complicated with a common infection and tenderness but it was resolving and the pain had subsided.

My step-mom, Sherry had just flown in and Lisa was really looking forward to the help. Sherry’s a family nurse practitioner and has 4 young grandkids and is as steady a hand as you could hope to have in a family. Lisa and Sherry had really hit it off the first time they’d met and a great visit the previous thanksgiving in Sherry’s and dad’s home had solidified Lisa and Sherry’s plan for Sherry to take time off from work to come help the week following the 23^rd. The various post-birth difficulties that Lisa shared with sherry lead to a fateful and life-saving change of plans. Sherry moved her trip up to right after Lisa’s mom and step-dad left and thus was sitting next to Lisa when her heart stopped.

We still don’t know with absolute certainty what caused what happened but the best judgment of Lisa’s physician is “long Q-T Syndrome, a shockingly rare genetic condition that was present in Lisa in its rarest form. The syndrome claims most of its victims early in life. For Lisa, it appears that giving life, childbirth, awoke the killer in her DNA. In any event what did happen is that without any warning whatsoever, just after we’d finished eating pizza and were about to watch the Olympic ice skating finals, Lisa’s heart just stopped.

Sherry, sitting next to Lisa, first noticed something was terribly wrong and called me from the kitchen. Lisa’s eyes were wide open but fixed; she was drawing only gasping breaths and was completely limp. Sherry’s training and experience kicked in and she had us start CPR. I had to pull/drag Lisa onto the floor and only at sherry’s insistence did I do compressions hard enough to be effective. By hard enough, I mean I thought I was going to break ribs. Believe me; the CPR classes many of us have attended do nothing to prepare you for the event itself. If sherry hadn’t been there Lisa would have died that night. As it was, we did CPR until the EMT's arrived. Their efforts to shock Lisa’s heart into rhythm failed and so they continued CPR until we got to Emergency where her heart was restarted about 20 minutes after it stopped.

We now know more about all of this. The syndrome is also known as “sudden death syndrome” with good reason. The heart goes into ventricular fibrillation. Unlike a “regular” heart attack where the heart is still moving blood, just not very well, a “v-fib” doesn’t allow any blood and thus, life giving oxygen to move at all. The result is unconsciousness in 3-5 seconds and death in as many minutes without immediate intervention, of the type sherry started. CPR in a “regular” heart attack is effective even when not done well because the heart’s still pumping. CPR with a heart in v-fib is the only thing moving blood and oxygen through the body. For oxygen dependent organs, CPR simply isn’t enough. Of these none is more dependent than the brain, which stores neither oxygen nor sugar. Thus, the loss of oxygen damages the brain quickly and forever. Different parts of the brain use oxygen at different rates and therefore suffer injury at different levels.

As Sherry and I began to realize how horribly Lisa was injured we were convinced we had failed her when she needed us the most. It was months before we had any sign we done Lisa any good. That sign came when Lisa’s speech therapist up at Select Specialty Care Hospital, Maureen, and her occupational therapist, Connie helped Lisa begin to communicate through nods and head shakes. Dad’s updates detailed those interactions so I won’t repeat them other than to say they proved Lisa’s memory, values, sense of humor and steadfast determination to get home to us are intact.

Dr. Kwasnica provided the explanation: while the back portions of Lisa’s brain that control muscles, consciousness and coordination are big o2 users the front part of Lisa’s brain, where that which makes Lisa lives uses comparatively less o2. Thus, while we weren’t able to move enough o2 for the back portion of the brain we did protect her frontal lobes, liver and other vital organs.

Early tests showed that while Lisa suffered significant injury to parts of her brain her frontal lobes were intact. There is still a significant consequence though to the injury Lisa suffered: spasticity. Those injured portions of the brain that controlled Lisa’s muscles, still continue to send electronic messages down the spinal cord, only now the messages are malignantly simple: “clench”

We’d been told from the beginning about this condition, that it would, sooner or later, strike Lisa and that we wouldn’t know when or how severely but with her degree of injury it would be significant. So, like kids of my generation practicing for a nuclear attack by kneeling in the school hallways with our heads tucked between our knees (kissing our asses’ goodbye, we later joked), our family and friends moved Lisa’s limp arms and legs in the manner directed.

When the Spasticity hit, and muscle tone in Lisa’s arms, shoulders, neck, jaw, lips, ankles went from limp to stiff to rigid, Lisa lost precious ground she’d gained. Misguided efforts to “encourage” Lisa to speak had already caused her stop trying to coordinate the many different muscles necessary for the effort. Now, Lisa, fully aware of the progress she’d made, lost her ability to nod yes and no, to move her arms and torso. None of us can know the frustration she must feel. Even her ability to consistently blink “yes” answers has been overwhelmed by the discomfort and pain brought on by the tightening of her muscles and joints.

Slowly, despite the best efforts of Lisa’s Rangers and her therapists, her range of motion decreased, and muscles began to contract and shorten. Her wrists and ankles in particular rotated in toward the muscles that control them as they tense and hold. Seeing Lisa’s frustration rise as her abilities decreased, Dr. Kwasnica knew it was time to be decisive. It was time to get Lisa over to Neurological. Rehab, not to start rehabbing but to reclaim her ability to rehab at all, before Lisa’s frustration and the spasticity got beyond our reach.

And so, on father’s day weekend, Lisa made her move to BNI. After a week of assessments, evaluations and testing, her team developed an aggressive plan focused on breaking the grip spasticity has on their new patient.

The attack has three prongs: first, to use the recently-implanted Baclofen pump to bathe Lisa’s spinal cord with a steadily increasing amount of the powerful drug that blocks the errant signals from Lisa’s injured brain causing the problem - once enough is being administered. Second, Botox injections, aimed at using the neurotoxin to offer quicker, short-term relief for Lisa’s ankles and left wrist, shoulder and neck until the Baclofen can reach therapeutic levels. Third, a series of casts on Lisa’s ankles to immediately begin to move her ankles back to a neutral position and permit her therapists to get Lisa back on her feet, a necessary element of other efforts to break up the rigid muscle tone in other parts of her body.

The results so far are mixed but promising. Lisa’s ankles are dramatically better and are near their original position. This will allow the casts to come off and permit less bulky and invasive splints to protect her gains. Baclofen and Botox work more quickly at lower levels on lower limbs, so this is expected and welcomed. The success also confirms the longer term effects we can expect in her upper extremities where progress is slower.

In Lisa’s upper body, Spasticity, like some expanding glacier stubbornly resists the Botox and will only yield to greater amounts of Baclofen. The good news, according to Dr. Kwasnica, is that the Baclofen will at some point reach a level where it will, like a warming climate ending an ice age, melt the tone out of Lisa’s muscles. The fact the medicine is all kept within the cavity containing and surrounding her spinal cord means the levels can be increased without exposing the rest of her body to the medicine and any possible side effects. This is important because Lisa will need the Baclofen pump’s protection from spasticity the rest of her life.

So for now, we are in something of a stalemate, waiting for the Baclofen to reach a therapeutic level, while using advanced range of motion exercises to keep the positions the Spasticity pull Lisa’s muscles in from shortening them. Lisa’s therapists continue to use new splints, exercises and stretching to buy more time.

Once this battle is won, what’s the next struggle? More about that once me get Michael home. It’s Sunday night, about 7:30, Lisa’s resting comfortably and we’ve got a heavy docket in the morning.

Richard

LISA TODAY

2006-07-04T00:08:00.000-07:00

LISA

TODAY
July 04, 20006

Barrow Neurological Institute

Phoenix, AZ

Introduction. The two paragraphs immediately below are made up from my imagination, also some of the events I describe never occurred… such as the “Sesame Street” episode I used to describe Michael’s vocalizations. My purpose is to draw you into Lisa’s story in a way that will enable you to relate and thereby become part of the story. My intent is not to minimize the seriousness of Lisa’s medical situation or of the struggle she is undergoing.

February, March, April, May, June and now July has arrived. I’m still laying here; the television is somehow on “Sesame S

treet,” and Big Bird… Big Bird screeching? Am I losing my mind? Is that Big Bird screeching? Whew, I wish I could laugh out loud. It’s Michael, making that funny-high pitched-screeching noise, and he’s charming Dr. Kwasnica, who is making her rounds with her nurse practitioner Suzanne and a resident, and they are all here in my room. I know he is successfully charming them because everyone is in good spirits and enjoying the moment. We’re all enjoying the moment.

I needed the break, I have really been thirsty, and from the extra fluid’s I was given I must of been dehydrated. An IV is a long way from a “cool one,” but it’ll do for now… until I can get out of here. Last night was restless for me, my breathing was audible, and it was decided I should have some precautionary tests. A chest x-ray, supplemental oxygen and a CT scan were ordered. All in a day’s work, you’d think, huh? The CT scan came at 2 AM, and me; having little else to do, took it all in stride. I was glad to hear the medics talking to Richard because they were saying my heart and respiration rates were spot on. You know I’ve always liked a normal heart rate, and that breathing thing, I like normal breathing too. I began to feel better soon after the IV fluids got into my system. The tests turned out okay, and unremarkable and I’m resting more comfortably now.

There is an

Isabel Bloom (Mother & Child) statue on a shelf overlooking my bed here at Barrow Neurological Institute (BNI). The day I was transferred to BNI, from Select Specialty Care Hospital, Mike a Nurse Assistant placed the statue on the shelf for me. Later that evening, Joe, a BNI Registered Nurse, got me squared away in my room. Joe noticed the Isabel Bloom right away, and asked about it. Sherry told him it came from Rock Island, Illinois. Joe became really excited because, as we learned, Joe was from Rock Island where the statue was made. He wanted to know all about it, and Sherry told him she received it as a gift from the Emergency Room Staff at St. Mary Medical Center. (Sherry is a 30-year employee of St. Mary’s.) Sherry told him she thought it would be fitting for me to have it. So there it stands and heartfelt greetings were shared all around.

Meet Heath

er (on the left below) a Nurse Assistant who works with Lisa. One can describe Heather as cheerful, willing, proficient and caring. It makes a day brighter when she cares for Lis

On the very serious side of matters, there is a war raging for Lisa’s body; it is being waged against Spasticity. After receiving applications of Botox and a bolus of Baclofen last week marginal improvement is seen in Lisa’s neck, shoulders, and waist. So in these three areas Spasticity has the high ground, so to speak. Lisa is, however, showing some improvement in her arms, legs and torso; it can be described as modest. Her dosage level of Baclofen is now at 450 micrograms. The drug is administered to Lisa 2 to 3 times a week, and on each occasion the amount receives is increased at the rate of 20 micrograms. It is expected she will reach a target, therapeutic level of 900 to 1000 micrograms in two weeks.

Dramatic improvement is seen in both Lisa’s ankles. She exhibits good range of motion. A week ago, had Lisa tried to stand she would have fallen because both of her ankles were turned. This is no longer the case as you can see below. The serial casts will prevent the reoccurrence of her ankles contracting.

On behalf of Lis

a, Richard and Michael, thank you most sincerely for the love and compassion you have shown them in this time, and for your continued interest in my narrative through “Lisa Today.”

Please send me your comments and suggestions, and especially questions that I may be leaving or have left unanswered.

To you and your family, we wish for you a very Happy and Safe Independence Day!

Until next time…

Michael

mlwintory@msn.com

LISA TODAY

2006-06-27T20:11:00.000-07:00

Monday, June 26, 2006
Barrow Neurological Institute
Phoenix, AZ

For Lisa, Monday started off with a massage and a team of orthopedic specialists. She was to receive serial casts. Serial casting is a noninvasive procedure that will help Lisa improve her range of motion so she can respond to her daily therapy with less difficulty. It is a process in which a well-padded cast is used to immobilize a joint that is lacking full range of motion. What happened during the Serial Casting session? Muscle strength and range of motion of the affected joint was assessed prior to application of the cast. The team of specially trained therapists then applied the cast in the joint’s optimal position and range. Casts are changed on a weekly basis until a target range-of-motion goal is achieved. Predicting the number of casting sessions is difficult, as each individual responds to the casting procedure at different rates. Typically, the casting procedure is completed in 4-6 weeks.

Lisa was also received several Botox (Botulinum toxin) injections on Monday. The Botulinum toxin can heal as well as harm. The bacterial toxin that can paralyze and kill if consumed in contaminated food is now safely used, in a purified form, as a medicine to control certain conditions marked by involuntary muscle contractions. The toxin is a protein that helps stop muscle spasms which are caused by chemical messages sent to the muscles from nerves. These messages tell the muscles to contract (to tighten up), and Botox is used to stop the muscle spasms because it blocks these messages. Botox is a standard treatment for spasmodic torticollis, a muscle spasm that causes the head and neck to pull in one direction. Dr. Kwasnica decided to use the injections to treat these and other problems as well.

Then Lisa received a bolus of Baclofen to hasten its benefit. The drug was given quickly by intravenous injection, and now we await the results.
The day was not complete without 3 hours of therapy. Each therapist divides their own time into 3-half hour sessions which are repeated twice by Lisa’s new physical therapist, and occupational therapist, and speech therapist.

Everything was accomplished under the watchful eye of Richard and Michael. Richard’s work in Ada, Oklahoma was completed on Friday, June 23rd, and he spent the weekend with Lisa and Michael.

Please write if you have questions. Several friends send wonderful jokes that I read to Lisa during our weekend visits. Thank you for helping me out.

Till next time….

Michael
mlwintory@msn.com

Lisa Today

2006-06-19T20:13:00.000-07:00

June 18, 2006
Phoenix, AZ

Barrow Neurological Institute is an internationally renowned medical center that offers care for people with brain and spine diseases, disorders and injuries. http://www.thebni.com/home.asp

Lisa, after 12-weeks, graduated from Select Specialty Care Hospital on Friday, June 16, 2006. The occasion was an event we celebrate and one that Lisa worked diligently towards since March 24th. This graduation, like most, needed a statement of farewell, and Lisa’s class of one, elected her to perform the valedictory address. Her speech may have gone, in part, something like this: “I want to recognize and thank all of the medical staff, professional nurses, LPN’s, NA’s, physical, occupational, and speech therapists, housekeepers, respiratory therapists, unit secretaries, the chaplain and everyone, whom I may not have mentioned, but who helped me get to this point in my recovery at Select Specialty Care Hospital.

From the beginning, Richard has been beside me, along with my Mom, Family and Friends. They’ve done for me what I couldn’t do for myself, and helped me with encouragement, and applause for my small victories, and never gave up on me. I also want to thank you for telling my story to your colleagues and friends, but especially for the constant prayers, well wishes, cards, letters, emails, phone calls and visits. God Bless you all. God Bless you all.

Dr. Christine Kwasnica decided Lisa’s transfer to the Barrow Neurological Institute on Friday. The hundreds of greeting cards that covered Lisa’s hospital room walls were carefully removed and stored in boxes for transport to her new room, as were her personal effects. Mike, a certified nurse assistant, took Lisa by gurney… with Sherry, baby Michael and me in tow, to the new facility. Lisa’s new address is: Barrow Institute, 350 Thomas Road, Room 08, Phoenix, AZ 85013-4409 (602) 406-3000. Her new hospital room is quite nice, and is close to everything she will need. The staff was very helpful in getting her settled and comfortable. Here is the part I liked the most, Richard is permitted to remain overnight with Lisa and Michael in her room. And, Richard took advantage of it this weekend. He flew in to Phoenix from Oklahoma for his first Father’s Day.

Sherry and I keep telling each other that “it’s not the heat, it’s the humidity.” I say to her, “Ya, know, it’s not the heat…..” BS It’s the heat! LOL

Till next time,

Michael
mlwintory@msn.com

A foot discovered, is a foot tasted------->

Michael today, June 19, 2006

LISA TODAY

2006-06-12T15:08:00.000-07:00

June 12, 2006

Phoenix, AZ

Lisa fought the effects of spasticity last week. She expressed her discomfort through the tightness of her muscles and contraction of her fingers. This was readily apparent to those who ranged her during the week as her muscle tone was tight, and Lisa had to work really hard to oppose the effects of spasticity. When Sherry and I arrived with Michael on Friday afternoon, her face was flushed and she perspired as one would from the strain of weight lifting. As an observer, it was difficult to see her struggle with the strain and burden that spasticity makes her bear.

You will recall that a special pump was implanted in Lisa to administer Baclofen in steady, slow, small increments into her spinal fluid. The drug combats her tightening muscle tone. The dosage she receives is carefully monitored by Dr. Bliss and Dr. Kwasnica. Lisa’s Baclofen tolerance allowed the dosage to be increased. At first, it seemed that Baclofen was going to have an easy time knocking the spasticity down, but as if the spasticity had a will; it began to resist the Baclofen. The situation resulted, I think, in causing the discomfort. (As an aside, Dr. Bliss recently slipped and fell in the cafeteria, and required him to have surgery after severely breaking his ankle. Nevertheless, he comes to Lisa’s bedside in a self-propelling wheelchair to manage her care.)

On Saturday Lisa received something for pain management, and began to relax somewhat. At 5:00 o’clock, we all attended Mass in the Hospital Chapel. Lisa, Michael, Sherry, Laurie and I went down to the Chapel for services. The priest was wonderfully compassionate and considerate of Lisa and Michael during the service. He made her really feel comfortable and welcome. It was a warm spiritual experience. Richard called the hospital from Oklahoma. He called from the home of Jack and Napua Davis. There he enjoyed more of Napua’s wonderful cuisine. The telephone in Lisa’s room has speaker phone capability which enables her to hear and respond to yes – no questions. They all spoke to Lisa and she enjoyed hearing from them. She especially liked hearing the music from the sound of Jack’s melodic and haunting flute.

By Sunday morning, Lisa was back, and looked perfectly radiant! The spasticity was beaten down and the battle (not the war) was won. I believe the successful counterattack resulted from the combination of physical and pharmaceutical techniques applied skillfully by her dedicated medical team.

Monday Lisa had more pain which was controlled with drug therapy and she was scheduled to receive more physical therapy today.

Michael

mlwintory@msn.com

LISALATEST.BLOGSPOT.COM

LISA TODAY

2006-06-09T10:23:00.000-07:00

Michael is four months old on June 10, 2006. Lisa and Richard's son is quite a guy. Here is a PhotoShow you may enjoy seeing. It's all about the boy!

mlwintory@msn.com
June 9, 2006
Oro Valley, AZ

LISA TODAY

2006-06-05T15:48:00.000-07:00

June 5, 2006

This week the battle continues for Lisa’s body. The Allies have professional leadership and staff on their side. They employ the best nursing care, therapy and pharmaceuticals as their weapons against the Axis “Spasticity.” Spasticity is a cruel enemy which, if permitted to have its way, painfully twists and contorts the patient with ever increasing malice. But the Allies are creeping ever forward over the battleground with therapy they apply with professional skill, attention, loving kindness and a genuine determination to conquer the Axis. The terrain where the battlefield rages covers every joint in Lisa’s body, and nothing is being conceded, nothing is being taken for granted except the ultimate Victory when Lisa’s can personally thank you and everyone for carrying her banner during this battle.

Rex and Steve, Lisa’s uncle and cousin, visited Lisa this week. It was heartwarming to see the obvious love and concern they have for Lisa. You might think this is a given, but they are here through no small effort on their part. It was a photo opportunity (with no camera’s present) to see grand uncle Rex showing little Michael the saltwater aquarium in the hospital’s visitor lounge. They have to return home on Tuesday. Richard, as you know, is in Ada, Oklahoma.

Friday was all business for us as Sherry, Michael, Mac & Tosh, and I drove to Phoenix in the early afternoon. Sherry had an appointment with Deb Pope, Therapy Supervisor, to receive training so that Sherry would be able to range Lisa during our weekend visits. Richard described Deb as a-get-it-done-right-the-first-time-person, and I found that to be the case, but she really understands how to communicate well, and motivates one to quickly assimilate the information and techniques required to be effective for Lisa. I felt privileged to see the exchange between Deb and Sherry, and even more so to observe Sherry administer the therapy throughout the weekend.

So what is Lisa doing? Lisa carefully follows the therapy she receives, and silently communicates her responses through eye blinks and facial expressions. Further, Lisa cooperates throughout the therapy session. For instance, Lisa might have her arm resting in her lap when Sherry says, “Lisa I am going to straighten your arm at the elbow and rotate your wrist so that your palm is up.” Then, as Sherry commences the ranging, Lisa deliberately assists by initiating collaborative movement that coincides with what Sherry had previously said. So what am I doing? I’m getting somewhat emotional seeing Lisa work so hard at overcoming the Spasticity.

Michael found his voice this weekend. To his own amusement, he made sounds like a screeching parrot. The nurses, housekeepers, other visitors, were amused, I on the other hand pointed to sherry and told everyone “She taught him that!” Yes, he tried it out on Lisa’s floor, in the visitor’s lounge, in the elevator, on the way to the parking garage, and even in the restaurant where we had lunch. It was there that I really began to get in to the parrot talk because the waitress brought us free lemonade. It was, she said, “… because everyone thought he was so cute.”

Linda Thompson and Lou Keel came from Oklahoma via Tucson to see Lisa. Sherry and I got the opportunity to be with Linda for several hours during Sunday. The picture on the left is of Linda and was taken in Midwest City, OK in late April 06.

Lisa’s picture was taken February 10, 2006 on the day she delivered Michael.

I was thinking about something to share with Lisa that would be a unique, and I came up with the idea of telling Lisa a new joke every time I see her at the hospital. So I called my friend Earlene in Michigan, and she told me the one about the elderly couple who appeared before a judge in court. The wife was charged with shoplifting a can of peaches. The judge asked her, “How many peaches were in the can?” The lady replied, “six, your honor.” The judge sentenced her to 6-days in jail… one for each peach. Where upon the husband raised his hand as asked permission to speak. The judge told him to come forward, and the husband said, “… she also stole a very large can of peas.” Now comes my problem, I am horrible at remembering jokes, and probably telling them as well, so I’d appreciate it if you would send my your favorite, and I can read it to Lisa when I’m there. Who know, a little humor may not hurt.

Michael

mlwintory@msn.com

LISA TODAY

2006-05-31T00:00:00.000-07:00

May 26-29, 2006

Phoenix, AZ

It is Friday, May 26th in Phoenix with Lisa. Hey everyone, Lisa’s husband Richard here, dad's driving back from Illinois and can't get to a computer; so it falls to me to give you all the good news that Lisa’s Baclofen pump went in this morning without a hitch. As dad mentioned in his last update, this medicine promises to remove the last major obstacle to Lisa’s beginning her rehab in earnest. In the test earlier this week, Lisa responded extremely well to a very small dose after just a couple of hours. So well, in fact, that Dr. Kwasnica (dad, please not the correct spelling) discontinued the trial. The doctor is "excited" about Lisa’s prospects.

Let me thank all of you for your prayers, thoughts and support, and for keeping them coming, Lisa’s got a lot of work ahead, and having your cards, notes and e-mails to read (to her) and literally post is a real blessing. In particular I’d like to thank Lisa’s Father-In-Law, Mother, Uncle & Aunt for their support, and effort to visit Lisa.

Today’s story is about a good and evil. Good, which we will call Baclofen* (Back-low-fin), and Evil, which has come to be known as Spasticity. Baclofen has come to join the fight against Lisa’s evil foe and all around bad guy, Spasticity. Normally-you-see, Lisa’s muscles receive electrical signals via nerves to contract and relax. Spasticity (her evil foe) comes about by an imbalance of electrical signals coming from the spinal cord through the nerves to the muscle. This imbalance causes the muscle to become hyperactive, resulting in involuntary spasms. Baclofen (our hero) works by restoring the normal balance and reducing muscle hyperactivity. In this way, it allows for more normal muscle movements.

Baclofen is taken orally as a pill or delivered directly into an area of the spine called the intrathecal (intra-the-cal) space. The intrathecal space contains the cerebrospinal fluid -- the fluid surrounding the spinal cord and nerve roots. Often MS patients (and those like Lisa) receive intrathecal Baclofen because oral Baclofen causes unpleasant side effects, such as confusion, weakness, and sleepiness. But intrathecal Baclofen delivers the drug right to the target site in the spinal cord. Since the medication does not circulate throughout the body, only tiny doses are required to be effective. Therefore, side effects are minimal.
The intrathecal Baclofen pump system is the way doctors give the drug directly into the spinal fluid. The system consists of a catheter (a small, flexible tube) and a pump. The pump -- a round metal disc, about one inch thick and three inches in diameter -- is surgically placed under the skin of the abdomen near the waistline. The pump stores and releases prescribed amounts of medicine through the catheter. With a programmable pump, a tiny motor moves the medication from the pump reservoir through the catheter. Using an external programmer, your treatment team can make adjustments in the dose, rate, and timing of the medication.

* The information about Baclofen is from “WebMD.COM.” The article I used is from the originated from the Cleveland Clinic; and appears on the Internet: http://www.webmd.com/content/article/57/66125.htm.

As I report these recent events to you, it’s late Monday evening; Richard and Michael are back from their extended weekend visit with Lisa. Now, over the weekend, Richard had a meeting those attending were Donna Cheek, Deb Pope and Christine Kwasnica (note the corrected spelling of Christine’s last name) The topic discussed was how to best provide the skilled, staff levels required Lisa to control spasticity during the time it will take the Baclofen to reach its therapeutic level.

As of now, Spasticity has not had it way with Lisa, as she has not suffered permanent injury from it. Richard’s meeting came about after the hospital’s chief executive officer pulled two key Restorative Aides from Lisa’s bedside and their ranging therapy. Yolanda and Bruce, the aides, were effectively ranging her and holding back the effects of spasticity. Commenting on why the aides were dismissed, the CEO said, “… their assignment to Lisa was not cost effective (or words to that effect).” Meanwhile the meeting continued and Deb Pope, Therapy Supervisor, and a person who has great concern for patient care, stepped up and offered to personally range Lisa. Then Richard, to make up for the staffing shortfall hired Yolanda privately after clearing the hire with the CEO. Additionally, Sherry with her medical expertise expects to also be involved in ranging her, and who knows, I could be a resource. We will be in Phoenix with Michael over the coming June weekends. This incident puts a face on the conundrum hospital administrators have been complaining about for a long time as they deal with the issues to solve the balance of providing healthcare services and its companion, the cost to provide the service. This is a head-up should you or a loved one be faced with a future hospital admission (my personal editorial opinion).

“Lisa, what’s wrong?” Richard asked, as he could see Lisa face was flushed. From past experience, Richard knew something was bothering her. He guess right the first time, “Surgery, is it the surgery that worries you?” Lisa, whose eyes were wide open, closed them for a long blink. This had become the sign for “Yes!” Lisa whose pillow was restricting head movement, chose to use her eyes to communicate. Richard then continued. He walked her through the surgery. She came to understand how it would benefit her. Much of Lisa has not changed. One thing that hasn’t is that surgery is not among her favorite things, as her personal experience with it is very limited. She still has her tonsils and appendix. Anyway, Lisa understood the why of it, and came on board with a Big Blink. You’ve got to love the team work between these two. Richard said, “after they paused a while, she seemed calmer and reassured.

Tomorrow (now today, as I continue writing this) Richard leaves (left) for Ada, Oklahoma. He will be there during June. You may contact him at the following number: (520) 419-5857, if he doesn’t answer, please leave a message. Remember he will be in trial so don’t expect an immediate reply.

You have really helped Lisa and the family with your prayers, acts of kindness, and well wishes. At the risk of going to the well one time too many, I want to ask you to include Lindley Bliss, MD who is Lisa’s attending physician at the hospital. Dr. Bliss coordinates her medical care. He’s been a superior, solid guy, who is kind, compassionate, and quick to respond. Today, (yesterday) he slipped on a wet spot in the hospital cafeteria fell and broke his ankle. Please join us in our good wishes and thoughts for his speedy recovery.
Jack & Napua Davis, and David & Suzanne Goodspeed have been very supportive of Richard, especially during the recent difficult times, and for that we’re putting our kudos go to them all. You have earned the big star. Thanks folks!
It has taken a lot of support, from a lot of people, many of whom are unsung to make this giant wheel turn. I wish there was some way to give each of them a gold star!

Michael
Oro Valley, AZ (PCS)
mlwintory@msn.com

Andrew Smith (6) and Cousin Michael (3 mo.) new best buds. (during Michael's Galesburg visit.)

LISA TODAY

2006-05-19T22:37:00.000-07:00

May 19, 2006

Phoenix, AZ

When we last talked, I told you that Lisa’s physician, Christine Kwasnika, M.D., said she would talk with the cardiologist about the risk/benefit of administering a drug to Lisa to control the effects of spasticity. Well, she did, and more so, she also talked with Dr. Decena whose sub-specialty is electro-physiology and it was he who attributed the cause of Lisa cardiac arrest to Long QT syndrome. It was also Dr. Decena, who got her electro lights in balance and implanted a cardioverter (cardiac defibrillator) into her chest on March 9^th. Well, he’s back to help out again (this time) with deciding which drug and what regimen would be optimum for Lisa. Something Dr. Decena said to the family shortly after Lisa’s March 9^th surgery, is applicable now, “… the healing process has begun.” Lisa is now cleared to receive Baclofen*. The drug will be administered to her in small doses over a period of 2 - 3 weeks for her to reach a therapeutic level. Dr. Kwasnika expects Lisa to stop suffering the consequences that spasticity imposes upon Lisa as she exercises her muscles. The penalty imposed upon her by spasticity is that the more she moves (even sits up) and works her body the more spasticity compounds its evil effects. Lisa doesn’t have to take this anymore as modern technology will be pressed into service with the implantation of a tiny pump will be installed to administer drips of Baclofen in very small doses in order to keep the dose amount low and controlled for the most effective level. spasticity compounds its evil effects. Lisa doesn’t have to take this anymore as modern technology will be pressed into service with the implantation of a tiny pump will be installed to administer drips of Baclofen in very small doses in order to keep the dose amount low and controlled for the most effective level. Dr. Kwasnika left with these parting words: “[Now]… we can see what she is capable of… [doing].”

Michael (mlwintory@msn.com)

*Footnote: Baclofen is used to relieve muscle spasms, pain and is a muscle relaxant and an antispastic agent.

Photographs: Lisa with Michael, February 10, 2006 and Michael 3-months later on May 15th

LISA TODAY

2006-05-18T17:46:00.000-07:00

Phoenix, AZ

May 16, 2006

... so it was with Lisa, that the time had come for Richard to ask her therapists, Marty, Maureen and her physician, to speak candidly with him about Lisa’s progress, and the likely outcome of her therapy. Marty, the physical therapist said, “Lisa is working hard toward her physical rehabilitation.” “She wants it, she needs it; she knows it.” Here’s an example, Marty said, “... during Monday’s therapy session, we lifted her from a seated position with a rack or patient lift (similar to example 1 shown at the right) and with the standing sling (similar to example 2 shown below, left) that supported her standing upright. Lisa began flexing her extensor muscles without prompting. The extensor is a skeletal muscle whose contraction extends or stretches a body part. (The rack incidentally, is a device the physical therapists use to lift a patient from a seated position to being upright.) The term rack; however is probably not the true medical-technical term for the device, but, as-they-say, “if it looks like a duck and quacks like a duck, it’s a... rack.” I know you’ve heard this sort of logic before, but I don’t get to attempt humor very often, and I just couldn’t resist. Anyway, with the support of the rack Lisa’s body is able to bear its own weight. Then Richard bluntly asked, “What is her range of recovery?” “... from what I saw on Monday, Marty replied, “on the high-end, I can’t rule out her walking, and on the low-end, Lisa would regain enough stability to enable her to sit upright in a wheelchair and operate it.

Maureen observed, “Lisa’s recent and dramatic swallowing is an encouraging sign of progress,” and added “She still has quite a journey ahead of her to communicate with speech and/or eat solid foods.” Everyday for Lisa is a day of opportunity and she faces it with grace and determination. But, last Thursday and again on Friday, Lisa became quite frustrated with her inability to speak. Maureen told Richard, quite plainly, that she did not want anyone to ask Lisa to attempt to speak or ask her to vocalize in any manner. Maureen’s judgment was vindicated today (May 17th) when Lisa mouthed the words, “I WANT.” Maureen spent the morning helping Lisa to form words with her mouth and tongue; without asking her to attempt to make a sound. She noticed that Lisa’s facial muscle tone was limiting her ability to move her upper lip, but not her tongue, lower lip or jaw. While Maureen did the work, Connie reaped the benefit. As Connie was placing Lisa into the infamous rack. Lisa mouthed, “I want” not once, but twice, and Connie said, “… unfortunately I could not make out the rest of what she wanted me to know.” But Connie continued working with Lisa, and a moment later had a thought, she asked, “Lisa, do you want to sit down?” To which Lisa produced a curt nod, “Yes!” to be rewarded with Connie’s prompt compliance. What a day in the neighborhood, huh? Group hugs all around.

Dr. Christine Kwasnika continues to struggle with balancing Lisa’s spasticity with the arsenal of medications available that are capable of controlling muscle tone; versus the adverse effect those medications could have on Lisa’s Long QT syndrome, which was the cause of Lisa’s cardiac arrest. Dr. Kwasnika acknowledged Lisa’s implanted cardioverter-defibrillator, the continual monitoring of her electro lights and the potassium/magnesium regimen. Dr. Kwasnika has agreed to further consultation with her cardiologist to explore the introduction of anti-spasticity medications.

I like the way this going now, how about you?

Michael (mlwintory@msn.com)

P.S. After more thought, Richard (during the time he is in Oklahoma) has decided to leave Michael in Arizona with Sherry and me in order for us to maintain Michael’s weekend trips to be with his Mother in Phoenix.

MSNMember.msn.com

2006-05-14T18:30:00.000-07:00

MSNMember.msn.com

LISA TODAY

2006-05-13T23:52:00.000-07:00

May 9, 2006

Phoenix, AZ
Oklahoma City, OK
Tulsa, OK
Galesburg, IL

Lisa’s story turned six-days ago on May the 3rd when Connie and Maureen therapists told Richard that Lisa was answering increasingly more complex and difficult questions (with head nods and shakes). Further, she answered quickly and consistently, thereby reached a new and higher achievement level in her rehabilitation.

Maureen and Connie were well prepared for what was coming next; so with Connie supporting Lisa, Maureen asked, “Lisa, do you understand what happened to you? Then, Lisa, who was quite awake and alert, promptly replied, “No” (with a negative head movement). And, so Ladies and Gentlemen, that was how and when Lisa first comprehended the significance of the cardiac arrest she suffered. Also, Maureen was determined to maintain the high level of trust between her and her patient, so she kept the information that Lisa received factual and straight forward Lisa’s situation was factually explained to her in detail.

Do you realize what just happened? Lisa understood them. That word, “understood” is a good news word as it indicates that important parts of her brain are in good shape and that the therapists believed, Richard was told, "... with hard work Lisa was going to make a good recovery." (You will find out later, if Lisa is buying in to this or not.) Maureen then asked her if she understood what she was being told and once again Lisa replied, “Yes” indicating, I understand what happened.

Richard and Lisa’s first conversation since February 23, 2006 the day her cardiac arrest occurred May 03, 06. It was truly a breakthrough day for all concerned. Richard was able to resume a conversation with Lisa that dates back to the day of her cardiac arrest. Their discussion had to do with an obligation of Richard’s to retry a death penalty case for the family of Debra Sue Carter who, in 1982, was murdered in Ada, Oklahoma. While in any other context this would be a private conversation between a husband and wife, its details reveal that Lisa’s memory, values, judgment, and fierce determination to be a mother to her son are completely intact.

Richard first asked if she recalled their conversation about Richard going to Ada to retry the murder case. Lisa immediately nodded. “Yes.” He continued, “Is it still okay for me to go back and do this?” Lisa again nodded “Yes.” “Honey," Richard said, "I want to talk with you about taking care of Michael during the trial. Is that okay?” Lisa nodes “Yes.” Then Richard asks, what he embarrassingly admits was a poor question, “Sweetheart, Dad and Sherry have been taking care of Michael, and will keep taking care of him, is that okay?” Lisa emphatically nods “No.” Connie, herself a Mother, and-just as important-not a lawyer, interjects, and says, “That was a bad question. I don’t think that Lisa understood.” So, Connie clarified that Sherry and Dad care for Michael during the day while Richard is at work, and when he’s in Phoenix with you; and it is only temporary... until you get strong enough to return home.” Connie then asks, “Is that okay?” This time Lisa nods, “Yes.” Then, Richard said, “… because Honey, you and I are going to raise this boy…” And before he could complete his sentence, Lisa interrupts Richard with an emphatic “Yes ” Later in the conversation Lisa indicated she wanted more time to think about the situation.

While other decisions remain for Lisa and Richard, another conversation with Maureen and Connie confirmed that Lisa has been left with her spunk and red headed attitude intact. Then, nearing the end of this grueling therapy session, Connie tells Lisa, “We have 10 minutes left in your session, and I’m going to give you a choice. You can have a lemon pop to suck on (the lemon juice soaked cotton swab is no small temptation for a dry-mouthed patient in rehab.) or you can work your torso. To pick the lemon pop just look over to where they are on the counter, to pick the exercise start moving your torso”

Those who know (or have come to know) Lisa won’t be surprised to read she immediately started moving her upper body. Connie, though, wanted be sure. “Lisa I need to know you made a choice. Would you please look over at the lemon pops just to show me you can?” Lisa stops moving, raises her eyebrows in disdain and stabs a look over at the lemon pops and back towards Connie, than without missing a beat, begins moving her torso again. Message received, Lisa you’re want to come home; the lemon pops can wait!

Bruce Bowers, one of Lisa’s Rangers, volunteers to provide Lisa with range-of-motion therapy. Bruce is a true friend to Lisa and Richard. Here is part of an e-mail he sent to Richard after midnight on the 3rd of May. I provide it so you can appreciate the unsung impact of his and other Lisa’s Rangers are making to assure her future well being.

Bruce writes: “Lisa has casts on both legs (from a little below the knees to 3/4s the way down on her feet)--these are to help with the foot drop-- and braces on both arms. These were new since we saw her last week. When we arrived, her base pulse rate was 105. We dispensed with the elbow extensions because of the braces--it looks like their purpose is to keep her arms extended. We did three reps of the arm raising with each arm, 3 minutes per rep. Her right shoulder seemed to be tighter than her left and her pulse went higher with the right arm, especially on the first rep. We also did three reps of 3 minutes at each stop for her legs. She did very well with everything with her legs--great hip rotation and very relaxed throughout the entire range of motion. She actually fell asleep while we were doing her legs and her pulse rate went down to 78 for a bit. She was alert when we first got there and blinked her eyes in response to questions. There are a bunch of birthday cards from family, friends and her nephew's class in school on the walls. It was an encouraging evening. BWB”

So Sherry, baby Michael and I rolled out of Oro Valley, AZ on Tuesday April 25th for Galesburg, Illinois, we retuned on Friday, May 6th. In that time, we drove 3,600 miles in our motor home, signed a listing with Century 21 to sell our house, gave a ton of stuff to the Galesburg Rescue Mission to get the house ready to show, said our goodbyes, introduced Michael to his Grandmother Beverly with Laura's support and assistance, had a gathering of Sherry's daughters and their families: Kevin and Dana Smith and their kid’s Allison and Andrew (they drove down from Minneapolis, MN); Barry and Kris Hitchens and their twins, Carly and Cooper (they drove up from Decatur, IL), Laura and her husband James, who lost his father during this time, were of immeasurable help to us, and I need to thank them for their wonderful help, we got the RV serviced and headed back to Arizona by way of Tulsa and Oklahoma City.

In Tulsa, we introduced Michael to Nicol and Donna Wintory, my brother and sister-in-law. They drove to Tulsa from Ft. Smith, Arkansas and rendezvoused with us for lunch. They fell in love with Michael, and I must say it was a wonderful to see them again.

Next we drove Midwest City, OK. Unfortunately, we were 3-hours late getting to the Hampton Inn. In spite of our tardiness, we were greeted with a marvelous reception that Jack and Napua Davis arranged. We were very, much honored to meet the 40 to 50 friends, relatives, and colleagues of Lisa and Richard who gathered to meet Michael. For Sherry and me, it was especially nice to see Suzanne and Collin Goodspeed again. We met them at Lisa and Richard’s wedding and again at Wintory’s in AZ. Lisa’s brother David, sadly, was called to Atlanta on business the day we arrived so we missed seeing him. Everyone was completely taken by Michael. He quickly got into being the center of attention and was content to be admired, held and cuddled by most everyone there. Napua prepared wonderful Hors D’oeuvres in the form of southern fried chicken and finger-licking-good, short ribs, and more for the guests to enjoy, and lucky they did because we were horribly late in getting there. Jack and Napua are gracious and kind. We spent the night at the Hampton Inn and woke to find biscuits & gravy and fresh hot coffee, mmmmmm good way to start the rest of our journey

Richard called us while we were en-route and asked us to bring Michael to Phoenix on our way home. He was there with Lisa After, some grumbling on my part, we did and I’m glad we did because Richard was really excited to see his son. Then on Sunday, Jim and Ann Peterson (who had been caring for Maggie) drove Lisa’s dog to visit Lisa; making Richard birthday May 7th the first time since Feb 23rd that they Richard’s family were together. It was a very happy weekend for them and Maggie.

Michael
Oro Valley, AZ
mlwintory@msn.com

Napua & Jack Davis, and the "Reception Committee" are from Linda Thompson. Sherry's daughters and grandkids: Kris & Dana w/Michael, Cooper (8) Andrew (6) Carly (8) and Allison (9).

Thank You for the Birthday Cards

2006-05-05T14:24:00.000-07:00

Dear Family and Friends of Lisa, Richard and Baby Michael Gene,

Thank you so much for all the beautiful cards, notes, and flowers you sent to Lisa to celebrate her 40th birthday. Carmen and Richard (as well as we) have been moved by your expressions of support, love, and encouragement for Lisa as she continues working toward recovery. Your overwhelming kindness and thoughtfulness are on full display on all four walls in Lisa's hospital room, considerably warming and brightening what otherwise could be a very humdrum and drab hospital room. As you can see for yourselves in the photo, among the room brighteners is a group of very creative original cards from Lisa's nephew, Collin, and his entire 5th grade class in Norman, Oklahoma. Not to be outdone, Collin's 3-year-old sister, Rylee, signed and sent her own special card.

We arrived on Monday and were sooo encouraged with the progress Lisa has made since we last saw her three weeks ago. She is in speech therapy for an hour each day and then, later in the day, in occupational and physical therapy for another hour. Her speech therapist is very pleased with her ability to answer questions, usually by nodding her head yes or no. And the occupational and physical therapists are also very pleased with the progress she is making in reestablishing control of her muscles. For instance, on Wednesday (May 3) they used an apparatus which required Lisa to stand by herself. In addition to standing, she was also able to shift her weight from one foot to the other on her own with no help from the therapists while on the apparatus.

Carmen has gotten in the habit of spending an hour or so with Lisa under the shade trees outside the hospital in a wheel chair between sessions with the therapists. She also takes her outside again in the late afternoon or early evening for another hour. The trips outside give Lisa a change of scenery with different sounds and smells to help reawaken all of her senses.

Thank you again.

Gratefully,
Shaggy and Rex

LISA TODAY

2006-04-30T21:08:00.000-07:00

April 30, 2006

St. Joseph Medical Center

Specialty Care Hospital

Phoenix, AZ

I would like to put a face of some folks I been talking about ever since Lisa was admitted to the Specialty Acute-Care Hospital in Phoenix. With the able assistance of photographer Richard Wintory Meet face to face Connie, Marty and Maureen. Richard describes Connie as the “Upper-Body-Brace Queen” and one who says to Lisa, “No more blinks from you little lady, I want to see you reply by nodding.” Marty the physical therapist has Lisa sitting, standing with assistance, working on her gross motor skills, regaining balance and protecting her gate. Maureen is the quoted as saying, “… if she can squeak—she can speak” or words to that effect. As a speech therapist Maureen is working hard to enable Lisa to vocally communicate. I’m not sure if “enable” is the appropriate word here, so if it isn’t pick one that works for you.

This weekend for and with Lisa has been fun and exciting. It started off with a visit from my sister Cora and her husband Austin who live in Denver. Austin was on business in Scottsdale and they took the opportunity to drive to meet with Richard and see Lisa. The four of them went outside to relax and enjoy the fresh air, sunshine and gardens at St. Joseph’s. Lisa had a special visitor. Maggie her Sheltie drove in from Tucson and this was a happy reunion for them both. (More about Maggie’s visit later) The four visitors (Austin, Cora, Richard and Maggie) had lunch on the hospital patio, and Maggie assumed it her duty to keep the marauding pigeons at bay while coffee was enjoyed. Cora surprised Richard with a gift for Michael’s college fund, and with hugs and tears the Klahn’s departed for the airport.

It would be fair to say, “Lisa loves her dog Maggie” they have been together for a very long time, and Maggie is, among other things, a traveler. She visited us once in Galesburg, but I digress. Maggie took a day trip to Phoenix and it couldn’t have turned out better. Upon her arrival, she walk in the front door of St. Joseph’s through the heavy foot traffic, and the commotion on the ground floor; then proceeded to the elevator as if it was part of her daily routine and boarded for a quick trip to the 3^rd floor. She then, head high tail wagging and with a regal gate proceeded to Lisa’s room amid the warm applause and cry’s of happiness from the hospital staff, visitors and those patients who could see her. It was her finest hour. She entered Lisa’s room as if she did it everyday walked up to Lisa’s face—licked it a couple of time, and proceed to turn around stick her butt into Lisa’s face and laid down. Maggie hung out on Lisa’s bed until it was time for therapy. She sat in Lisa’s lap while Maureen worked with Lisa, and she calmly waited while Lisa was prepared to go outside and happily as noted earlier remained beside Lisa throughout lunch. Year ago, the Sisters of Mercy would never have dreamed of letting a dog enter a hospital, but well documented research has shown that dogs ease anxiety, improve health status of hospitalized heart failure patients. A Sister suggested to Richard that Maggie visit the other patients on the floor, and she was a big boost to everyone’s morale. So Maggie earned the smiles she got!

Doctor Christine Kwasnika and Richard were in a 40-minute meeting about Lisa’s condition. She reviewed the MRI scans taken in Oro Valley and said they were encouraging in that her front brain condition was preserved. She also noted there was no organic damage that would prevent Lisa from making a significant recovery. Dr. Kwasnika then clarified when she said, “I mean nothing is keeping Lisa from making her goal.” The immediate goal is for her interact and provide clear yes/no responses to stimuli. You may be wondering, about medicine, wouldn’t one or more of them help? Yes, there are dozens of medicines that are used in these kinds of situations, that Dr. K. can not use them because of Lisa’s heart condition and her experience with Stevens-Johnson syndrome. Dr. K. is treading very lightly, and very conservatively, bit is pleased and encouraged by Lisa’s steady progress without drugs being in the arsenal. The doctor’s approach is made difficult by the fight to get more awake time with Lisa without drugs and the fight against her body when it is affected by spasticity. Spasticity is a physical condition that occurs when certain nerve signals do not reach muscles because of injury or disease that affects certain parts of the brain or spinal cord. Common conditions associated with spasticity include cerebral palsy, brain injury, stroke, multiple sclerosis, or spinal injury. Spasticity is characterized by tight, stiff muscles that make movement, especially of the arms or legs, difficult or uncontrollable. This is why the therapy is so aggressive with splints, casts, range of motion therapy, standing her erect, seating her in a chair, having her support herself into a seated position. This past Thursday, a fiberglass cast was applied to Lisa’s feet and ankles, wrists and arms. Instead of the cast’s color being Oklahoma crimson it was in fact the weenie red of Nebraska, and much to the delight of Connie a Husker. The purpose of the serial cast’s adjustment of her feet and ankles are to help resist the spasticity. As time has progressed, ranging Lisa is requiring more force and she has been moved from splints to dynamic ranging with a new device which enables more aggressive treatment, but is also more comfortable and adjustable.

To recap, Dr. K. said that if one followed the book one would not be this aggressive, but the medicine used to fight spasticity would make Lisa drowsy and could have adverse side effects on her heart and/or could reignite the Stevens-Johnson syndrome. Therefore the splints and casting because they lower the risk, and preserve her alertness. The race here is between Lisa’s ability to command her body and communicate with us given the injury to her brain. Speaking of race it’s not a sprint, but a marathon.

Lisa has had all of the tubes removed save the feeding tube. That means the three towers with 18 bags dripping into her body is now reduced to 1 tower and 1 bag. The PICC is out. The catheter is out. The trac is out, and the hole from the incision is healing nicely.

Forecast is 2 more weeks at Specialty Care Hospital then on to Barrow Institute. and Barrow something like 8 to 10 weeks, and afterward outpatient rehab 6-months to a year or possibly more. At the moment Tucson isn’t ready for a patient like Lisa and as this likely a 2-year marathon it seems Phoenix is the very best place to “hold” it. When one looks at a life time, 2-years of inconvenience to give Lisa the best possible opportunity available is more than well worth the sacrifice by Richard for him to get 40-good years together as a family.

Two days ago, Maureen said, I know Lisa vocalized and last night Jay, CAN who works with Lisa heard her vocalize twice. Lisa ended the day with a “leg” up on tomorrow.

Michael

mlwintory@msn.com

Galesburg, IL

P.S. This is my last report from Galesburg, unless we get some late breaking news about Lisa, until next weekend when we’re back in Arizona.

Photo credits: Connie, Marty and Maureen taken by Richard at Specialty Care Hospital. The picture of Lisa and Maggie and Lisa were taken on her and Richard's wedding day.

Lisa Today

2006-04-28T19:38:00.000-07:00

16 – 26 April 2006
St. Joseph Medical Center
Specialty Care Hospital
Phoenix, Arizona

Some of you certainly were in church on Easter Sunday morning, and I know you and others had Lisa in your hearts, because it was so with Lisa, Richard and 9-week-old Michael. The three attended Easter services at the St. Joseph Chapel. Richard drove Lisa, dressed in very-nice purple pajamas, by wheel chair and towed Michael in his buggy. It seemed that everyone was united in their well wishes for Lisa and were moved by Richard epitomizing the well known slogan ‘The family that prays together stays together.” And again, this Sunday past, the three made their way to the Chapel again. So, you say? Well yes, you see there was a couple there who had attended Easter morning services with the three Wintory’s; and it was the couple who now approached Richard. “Richard,” the husband said, we want to do something that may be of benefit for Lisa” and with that, he reverently presented small vial to Richard. He explained they had just returned from a spiritual pilgrimage to the shrine of Our Lady of Lourdes at Lourdes, France, and with them, they safe guarded 2-small-glass vials containing Holy Water from the spring at Lourdes. “Lisa must have this,” he said, and without further ceremony pressed the vial into Richard’s hand. Lisa & Richard above had this picture taken while visit Nicol and Donna Wintory in Fort Smith, Arkansas.

Sherry, baby Michael and I, with Mac and Tosh our two Scottish Terriers took off for Galesburg, Illinois in our Fleetwood Expedition RV over week ago. As usual, our estimated, and I use the term loosely, departure was Monday afternoon. The ETD grew legs and we finally rolled out at 10:00 AM Tuesday. We traveled along the southern route which took us through Oklahoma City. Jack and Napua Davis, Michael’s God Parents, live in near by Midwest City so we on the second day stopped there. Everyone was excited to see everyone, and it was marvelous to receive their wonderful hospitality. We rested, enjoyed a wonderful meal and were on our way to Tulsa, Oklahoma. We got a couple of miles down the road when Sherry’s head count revealed that Mac was missing! With global positioning assistance, I got quickly turned around and back we went. All kind of thoughts raced through my head, as you can imagine… what with finding a black dog at night. But, when we arrive, Napua greeted us with Mac in her arms. It was all good from there on, all the rest of the way to Galesburg. By the way, I want you to know it is safe now to drive through Missouri because I killed all the bugs with my windshield on our way through. We arrived at 10:00 PM on Thursday. On Friday, the three of us went to services at Temple Sholom the synagogue in Galesburg. We were warmly received and there was a prayer said for Lisa. I also took this opportunity to have Michael re-circumcised, and get him his own kippah. (It’s a joke) Our trip to Galesburg was necessary because Sherry and I needed to make a decision about our home. We concluded that caring for Michael’s well being was more important than our Illinois residence so we listed with Century 21. That was the easy part… but we are leaving family her Laura and James, and many people we feel close to. Michael has been able to spend time with his Grandmother Beverly; you can imagine she was delighted, and so was Michael. He snuggled in arms like he belonged there. It was really nice to see. Anyway we return to Arizona next Wednesday. On this leg of the trip we’ll see Nicol and Donna Wintory (my brother & sister-in-law) in Ft. Smith, Arkansas, and then on to Oklahoma City again were we’ll be with Jack and Napua and see David and Suzanne Goodspeed and family. Michael doesn’t want to miss a trick. The picture (above) of Michael was taken on his first trip to Steak & Shake and the 3nd one was taken with Richard's Mom, "Grandmother Beverly."

Lisa continues progressing as she moves slowly along the long road toward her recovery. To those of us who can only watch from the sidelines, we must be patient and supporting of all those entrusted with her care. Earlier, Lisa conscious state was evaluated using the Rappaport assessment which identifies 4-broad stages of a coma patient. Stage 1: Coma, Stage 2: Moderate Coma, State 3: Near Coma, and State 4: Non Coma. As Lisa’s ordeal began she was in State 1 during her hospitalization at Northwest Medical Center – Oro Valley, AZ. While at the Arizona Burn Center in Phoenix, Lisa progressed through Stage 2: Moderate, as her response to stimulus was with inconsistent ability. Three weeks ago she progressed to Stage 3: Near Coma. She now responds consistently to stimulation of two senses. As Maureen her speech therapist put it, “She, at this level has significant room to improve.” Lisa has been vocalizing, albeit non-volitional for a while. In the last 10-days, Maureen, has observed Lisa moving her mouth and tounge in a purposeful manner when she nods her head in response to Maureen’s dialogue with her. Lisa made a slight vocalization to Maureen prompting, and Maureen states, “If she can do it [make a volitional sound] a little, [we can] expect more to come.” Last Sunday, Deb Pope, therapy department supervisor, who Richard decscribes as “… salty, 30-year healthcare veteran who is very direct and professional in her manner,” looked Richard in the eye and told him she was optimistic and is encouraged Lisa’s responding immediately to therapists requests, and she also distinguishes the presence of others, like family members. She said that Lisa will leave Specialty Care Hospital within 2 – 4 week time frame. Lisa’s tracheotomy airway opening was closed; a good step forward to the short range goal of entering the Barrow Institute. Barrow specializes on patients with Lisa’s condition. Looking further ahead, Lisa is expected to receive care from Barrow for 2 months or more, as the case may be.
Here is the St. Joseph Medical Center (Barrow) address you may want to see it. http://www.mha.chw.edu/index.asp?pg=news_BNIBest&
supnav=au_news_supnav

A couple of days ago Lisa had her 40th birthday, and we leave the moment with one of her physicians remarking, “… we expect improvement, and we’ll wait and see…”

We three travelers will depart Galesburg “sometime” Wednesday. We have made a full commitment to Richard, Michael and Lisa by listing our house with Century 21. Sherry has worked very, very hard to get it ready to show. Michael has been very cooperative and giving us time to do the 1,001 things that need doing. He is spending some quality time with his Galesburg Grandmother Beverly, and what a delight he is to all.

Warmest regards to you from Illinois,

Michael
wintory@msn.com

Lisa's Birthday

2006-04-23T04:32:00.000-07:00

Dear Friends and Family of Lisa and Richard,

We have tried to contact many of you by e-mail, but just in case our note didn’t reach you we are posting our request.

As Lisa’s aunt and uncle, we would like to ask you all for a special favor on Lisa’s behalf.
Lisa’s 40th birthday will be this coming Thursday, April 27. To acknowledge this milestone, would you be willing to send Lisa a birthday card?

It can be addressed either to Lisa and Richard’s home or directly to the hospital. If you would like the hospital address, please contact me at youngmasy@verizon.net.

Lisa’s uncle Rex (Carmen’s brother) and I have visited with Lisa twice since February and will be returning to Phoenix for another extended stay at the end of April. We will be happy to read the cards to Lisa if Richard and Carmen don’t beat us to it.

Thank you so much, in advance, for considering participation in this card brigade. We know it will mean a lot to Lisa.

We continue to stay hopeful, prayerful and positive as Lisa’s recovery continues.

Many thanks,

Shaggy and Rex Young

PS. For those of you who do not know us, Lisa lived with us in the 80’s while she worked at the US Supreme Court. She is like a daughter to us and a terrific “big sister” to our children, Larisa and Steven.

LISA TODAY

2006-04-14T20:54:00.000-07:00

April 14, 2006
54 Day into the ordeal
St. Joseph Medical Center
Specialty Care Hospital
Phoenix, AZ

Our plan was for Richard to drive to Phoenix early this morning with Michael to be with Lisa this Easter Holiday weekend. Lisa, we learned developed an eye infection yesterday so Michael’s travel plans to be with his Mom are being delayed until we learn if the infection is contagious or if it presents any danger to the baby. So for now, we are on runway alert, so to speak, and as soon as we get clearance from the docs in Phoenix, Sherry and I will take Michael to his parents.

Richard talked with Connie, Lisa’s occupational therapist yesterday. Connie told him of a conversation she and Maureen, the speech therapist, had with Lisa during their therapy session yesterday morning. It illustrates Lisa’s cognitive ability. Maureen asked Lisa, “… are you glad your mom is here?” Lisa motioned affirmative. The questioning is part of Lisa’s 45-minute therapy sessions. But, I must digress for a moment, please indulge me. I hope you remember when I described Lisa’s first efforts to communicate way back on March 6, 2006? Let me refresh your memory. I wrote, “This morning Lisa responds to commands, i.e. Richard asks: “If you can hear me blink.” Lisa blinks. (The blink is more a squinting as her eyes do not actually open, as if the effort to open her eyes is too strenuous.) Richard asks: “If you understand me, move your eyes side to side.” Lisa moves her eyes side to side. (The eye movement is with eyes closed, but the effort can be seen as her eyeballs shift from side to side underneath her eyelids.” Today, we have an entirely different scenario. One that I think you will appreciate. It is a demonstration of courage and perseverance by all concerned. But first, I learned, just now, that the eye infection Lisa has is conjunctivitis or pink eye as some folks call it. It is being treated with antibiotics. Lisa also was found to have more of the nasty staphylococcus bug, and the antibiotics will deal with it as well. Besides delaying Michael’s visit with his Mom, it is delaying the removal of the PICC line. What I’ve just done is given you the bad L news. Now for the “rest of the story, Lisa is holding the line with regard to the contractures she has; this is muscle tightening and defined as, “a permanent abnormal tightening or shortening of a body part, such as a muscle, a tendon, or the skin, often resulting in deformity.” She is holding her own through the efforts of dear, Godsend friends who visit her regularly and provide range of motion therapy. The ranging combats the contractures. How huge is it to have friends, who are not in the healthcare business, volunteering their time to provide this extremely useful hands-on-therapy.

Significant and measurable progress was made this week as Lisa went through her 45 minute workouts with the 3-Amigos (PT, OT and ST).

Getting back from my digressions now, Lisa initially could only respond to very elementary requests such as, “blink” if you understand. Today she accurately responds to complex questions that require her to simultaneously utilize a large set of thought: comprehension, memory, recollection, evaluation, decision making, and response. Check this out…

Question: Lisa, did you meet your husband in college at the
University of Oklahoma?
Response: No. Lisa is still unable to vocalize a response, but capably moves her head in a negative response.

Lisa was postured in an upright sitting position with the assistance of three nurses while she was at the Arizona Burn Center. Yesterday, one therapist sat her at the edge of her bed, posed her arms behind her, and spotted while she maintained her balance for several minutes. And going further, with assistance, she can hold her head upright and balanced between her shoulders. All the things we take for granted she must summons from within herself to restore..

With this issue of Lisa Today I have included a picture of Sherry and Me. Our 25th Anniversary was April 4, 2006 and we celebrated with some wonderful folks at a wonderful Japanese restaurant in Tucson. It was a very happy occasion for us, and it was made so by the great folks we were in the company of.

Michael
mlwintory@msn.com

LISA TODAY

2006-04-12T20:07:00.000-07:00

April 12, 2006
St. Joseph Medical Center
52 Days into the ordeal
Specialty Care Hospital
Phoenix, Arizona

Richard is back in Tucson at work and spending his off duty hours with Michael and Sherry and me. Quite a few folks have offered to do what they can to support Lisa’s recovery. Two friends of Richard, Suzanne and Bill took time out of there day Tuesday and went to the hospital in Phoenix to help her, and they did by providing Lisa with range of motion therapy.

I had the good fortune to receive a brief e-mail description from them of how they found Lisa and what they accomplished and learned during their visit. Let me share their remarks with you now, this is what they wrote:

“Lisa looks great! She went to therapy twice today and was asleep when we got here. She slept through our Jane Fonda [my emphasis] workout and the doctor’s visit. (Filling in for her doctor, Nurse Carol was happy with what she saw today. Her right side seemed more flexible than her left (or it could be Bill is stronger).” Suzanne and Bill

I misinterpreted the observation by Suzanne and Bill’s e-mail; that the “right side flexibility” was an indication of progress; but in fact it was just the opposite because it reflects a lack of muscle control. My error, as I think about it now, is a good way to get a false story circulated, and there is no room for that in Lisa Today. So then, what does or would Carol, Lisa’s nurse, and her doctor’s use to measure or determine her progress. I learned from Richard how they go about determining if she is responsive and can control her movement. What the medics do is not only smart, but fascinating to me a medically ignorant person. I’ll make a layman’s comparison. The layman would stand beside Lisa and ask, “Lisa move knees together.” The layman would expect movement from her legs. Marty, the physical therapist, would place her own finger tips upon the muscle that controls the knee movement to sense any movement or contraction. An imperceptible effort on Lisa’s part would be felt by the professonal and provide the all-important-confirmation. Another example, with Lisa’s head is on a pillow the layperson would ask Lisa to move her head from left to right. Connie the occupational therapist would hold Lisa’s head upright and Maureen the speech therapist would ask the questions. See? Lisa’s three therapists, Maureen, Marty, and Connie have all reported small, gradual and real improvement by Lisa. Her improvements today were more than yesterday, but we are cautioned that during the process that there will be peaks and valleys and periodic plateaus. Therefore patience and more patience on our part is mandatory.
Sherry and I need to get back to Galesburg, Illinois in order to settle a few matters that require our attention. We intend to depart on Monday with Michael and will return in 3-weeks. Michael’s other Grandmother, Beverly resides in Galesburg and this will also give her an opportunity to meet and be with him.

It is my intention to keep “Lisa Today” current with information I receive from Richard, and hopefully Lisa’s Mother, Carmen. Carmen returned to Phoenix from a brief trip to Oklahoma where she had to attend to some pressing matters. She is residing in Phoenix through the courtesy and accommodation of Sandy Jenzen. Sandy has also opened her home to Richard during his weekend visits with Lisa.

Michael
mlwintory@msn.com

Pictures of Michael were taken yesterday afternoon. He is involved, seriously involved, with his favorite awake activity.

LISA TODAY

2006-04-09T15:32:00.000-07:00

Sunday – April 9, 2006
St. Joseph Medical Center
49 Days into the ordeal
Specialty Care Hospital
Phoenix, AZ

Sherry, baby Michael, and I drove to Phoenix Saturday morning for Michael’s first visit to be reunited with his Mother. There is something about a sunny, Saturday morning drive in an air-conditioned Honda that gets Michael every time. Sheep. It’s the sheep. Those fuzzy pillow-soft fence jumpers that took him with them to Zzzzzzzzzz City. Although Sherry was pointing out to Michael the sand, cactus, rocks, occasional hawk (“painting lazy circles in the sky”) and other brown and various shades of brown things that might interest to him… it was the sheep that won the day as he simply, could not break his attraction with the with the white, wooly fence jumpers with black numbers painted on their sides. He slept, and even slept after we all safely arrived at St. Joe’s. He slept during the stroller ride through the parking garage, and slept as we met his father outside the parking garage, and the brief stroll to the hospital proper, and continued to sleep in the elevator ride all the way up to the 3rd floor where the Specialty Care Hospital is located. And, on to his Mother’s room he slept through the first part of his with visit.

Lisa looked beautiful. There are no visible after effects of the Stevens-Johnson syndrome on her face. Her skin had a sweet youthfulness and her big blue eyes fascinated me for their beauty. Richard announced our presence to Lisa. He didn’t play any games with her, like “guess who’s here?” he simply, in a quiet reassuring, tender voice said, “Lisa… darling, Michael is here, and I’m placing him in your arms.” It was a beautiful scene.

Michael continued to sleep in his mother’s arms for a few minutes. Then he slowly started to awaken… stretched, raised his little arms over his head and touched his mother’s face. Then he made a little coughing sound, opened his eyes and told everyone in the room and down the hall that he wanted to eat. Sherry took him then, and Michael did what he does best, drain a full 6 ounces of Similac without hardly a burp. While he drinks, he makes soft, little noises, as if the say, “Yummmmy this is good, really good.” And, “Don’t you even think about blotting the milk from my mouth and chin, if removing that bottle is involved. So Sherry didn’t and we walked outside of Lisa’s room.

Then, Richard and Rebecca, Lisa’s charge nurse, and another nurse prepared Lisa for a walk outside of the hospital. They placed her into a chair. The special chair supports her body to enable her to sit upright. The chair makes it possible to move her about for that import breath of fresh, outside air and sunlight. Lisa has been in the healthcare delivery system; bed-ridden since February 23rd and in spite of it, she looks radiant.” Our outside the hospital walk took us under the branches of several yellow, flowering Palo Verde (trees) through which dappled sun light played on the sideway and on Lisa’s shoulders and auburn hair. There was a magic about it as it made her glow wondrously. If we could have heard Spring playing from Vivaldi’s Four Seasons it would have been near ideal. These days we take our pleasure where we can find it.

Sherry suggested to Richard that he might keep Michael with him overnight so that the baby could spend more time with his mother. So it was agreed, and drove to Target to pick up a portable travel baby bed for Michael. It provided him with a safe, secure baby bed.
We returned to Oro Valley, took in a restaurant and a movie, and actually didn’t know what to do with ourselves. Who would have thought it? Richard returns home Sunday afternoon, so the “not knowing what to do with ourselves” won’t last too long.

Michael
mlwintory@msn.com

Lisa’s picture was taken January 2, 2006 by Linda Thompson in Norman, Oklahoma. I made (digital camera) the mountain landscape picture from Richard and Lisa’s back patio after a brief rain shower earlier this week.

LISA TODAY

2006-04-08T09:08:00.000-07:00

April 8th, 2006
From my e-mail bag, a Q & A is appropriate…

Question: I have one question tho.......are Lisa's eyes open while all this exercising is going on? Does there seem to be any responsiveness (as yet) in her vision, or are we still waiting for that to come?

Answer: Sherry and I are driving to Phoenix with Michael this morning. It will be his and our first trip to see his mom in several weeks. Regarding Lisa’s level of conscientious, I’ve learned that quite unlike TV and the movies, you don't "wake-up" the way we do in the mornings. You have various levels of wakefulness. The goal for Lisa is to get time like she had in therapy yesterday for longer periods and more frequently. This is her gift today for us as we are waiting in the wings. She can do this, my goose bumps tell me so.

Michael
mlwintory

Picture is of Lisa reacting to a baby shower gift January 2nd, 2006. Picture is from Linda Thompson, Norman, Oklahoma.

LISA TODAY

2006-04-07T19:33:00.000-07:00

April 7, 2006 (Part II)
47 Days into the ordeal…
Specialty Care Unit
St. Joseph’s Medical Care Center
Phoenix, AZ

To paraphrase Winston Churchill, “It is not the end of Lisa’s ordeal, and it is not the beginning, but it is the end of the beginning!” Today Lisa, for the first time, made cognitive and volitional responses to questions and requests. Lisa went into therapy today bathed, groomed and rested. She was dressed in a racy, hot pink tea shirt (Richard’s description) and coordinated workout pants. The therapy began by Lisa being placed at the edge of a low-cushioned table. There, a large exercise ball was positioned so that it tucked under her chin, and then her arms were placed around the ball. The great thing about the ball is it balances weight and properly positions her head on her shoulders. Lisa has a tendency to clasp her arms to her chest; therefore the ball functions as an isometric exercise as she clasps the, and then…the therapists pull Lisa’s head back off of the ball and Lisa returns her head to the ball.

Today it was Connie, an Occupational Therapist and Maurine a Speech Therapist working with Lisa. Richard describes them as “seasoned and salty professionals” who both might have come to Arizona from Missouri. (In case you don’t get my weak attempt at humor, the Show Me State.) It starts like this. Connie says to Lisa, “Okay Lisa, today we want to establish your ability to communicate with us. So, when you want to tell us NO, move your head from the left to the right. Lisa show us you understand by telling us NO.” LISA slowly and deliberately began to move her head to the left; she then deliberately rotated her head to the right. “Lisa,” Connie instructed, “now, when you want to tell us YES, move your head down and then up.” Lisa slowly and deliberately moved her head down, way, way down. So far down, in fact, she needed boost to assist her effort in raising her head, but she did it. Richard meanwhile continually encouraged her and gave verbal support. I don’t know, but he may have still been under the influence of the pink tea shirt. (Just kidding)

Then, then Maurine asked, “Is Richard in the room?” Lisa said, “YES,” by moving first down (but not so far down this time) and then raised her head up.” LISA OBVIOUSLY LEARNED NOT TO GO TOO FAR from her previous response. Now, Maurine asked, “Is your mother in the room?” Lisa said “NO,” by deliberately moving her head to the left, and then the right. Richard then questioned, “Do you want Michael to come and see you?” Answer, with head movement, “YES.” Richard then asked Lisa, “do you know how much I love you?” and Lisa nodded YES. It was then, Richard said, “that Maurine and Connie lost it.” (their professionalism that is, by cheering.) Connie continued, “Lisa, remove your right arm from the ball.” Lisa responded by slowly pulling away from the ball, but there was a problem. Lisa, you will remember, was in the hot pink tea shirt so her arms were bare, so after Connie “unstuck” her from the ball, Lisa resumed her progress of slowly removing her arm from the ball. When asked to do the same with her left arm, her response was quicker, but not more decisive than with the right arm. Let me say it, “Yes, Lisa was decisive with both arms!” Connie asked Lisa to push back against her and to rock forward. Lisa ever so slowly, without-a-doubt, complied. There was no delay in her initiating a response. Lisa clearly was processing the information and responding appropriately. Whew, I’m exhausted, but there is more, much more. Remember the table? With the table she was slowly rotated to an upright-standing on her feet position! Now, get this, Lisa while upright was still able to move her head left and right with direct responses to questions. And she continued to be stimulated in this manner until Dr. Kwuazika arrived. What Dr. Kwuazika told Richard was that Lisa is in stable condition and showing “terrific progress. “such good progress,” she said that it warrants the administration to a new medication, PROVIGIL. (PROVIGIL is a medication to treat excessive sleepiness caused by certain sleep disorders.) PROVIGIL will help Lisa focus on stimulation, and has the least side effects risk. The doctor said that the kind of response that she exhibits is progress one usually does not observe this early, and is a positive predictor of a good outcome. Richard got a little excited at this point, as you can imagine. So he flipped into his prosecutor mode (no surprise, huh?) and sought clarification from Dr. Kwuazika. She, the doctor, said, “… absolutely is a positive predictor of a good outcome.” But wait, there’s more.

Lisa is now breathing through her mouth and nose as a small plug was placed into her trach, and also she is vocalizing more. As aside, she receives her meds by IV and through the PICC line. The trach facilitates suction and is used to keep her lungs clear. I mention this detail because it indicates Lisa is well on the way to having the trach removed. Dr. K followed by adding, “… this is what we need to be seeing to get her into Barrows. (Hospital, which according to U.S. News and World Report, is one of America's finest neurological... ) Remember? Barrows Hospital is the next beginning in her rehabilitation.

St. Joseph’s has a beautifully landscaped courtyard, and Richard and Lisa finished the day with a walk in the park, so to speak. Lisa deserved the aroma from the flowers in bloom and the splashing water as it played in the fountain.

Michael
mlwintory@msn.com

Pictures of Lisa, Lisa & Richard taken by Linda Thompson, Norman, Oklahoma January 2nd, 2006. Richard and Michael’s pictures were taken while Richard was slaughtering a carrot in his kitchen… earlier this week. 

LISA TODAY

2006-04-07T16:06:00.000-07:00

(Part I)
April 7, 2006
47 Days into the ordeal…
Speciality Care Unit
St. Joseph’s Medical Care Center
Phoenix, AZ

I received an email today lamenting the lack of information about Lisa, and it occurs to me that you may be wondering what is going on. At the moment, I have not news since April the 4th to report as Richard has been in Tucson and he is my only source of information. Richard retuned to Phoenix at 6 A.M. today, and said he has a conference with Lisa’s physician and senor management at the hospital, but at this hour, I have not heard from him. We are playing phone tag so I will sit tight for now, and follow up with you ASAP.

Sorry about this!

Michael
mlwintory@msn.com

LISA TODAY

2006-04-04T17:57:00.000-07:00

April 4th, 2006
40 Days Into the ordeal
Select Care Hospital
St. Joseph Medical Center
Phoenix, AZ

When we were last talking Lisa was rebounding from a high fever they were trying to control by using a cooling blanket. You’ll recall by the time it was over Lisa’s temperature returned to normal, and she appeared to be resting comfortably.
Over the weekend Lisa had restful days and nights. The cooling blanket was removed and she was at a comfortable 98 – 99.5 degrees and maintaining it. The infection which caused her high fever was pseudomonas and staphylococcus, and was successfully treated with antibiotics. Lisa’s heart rate was normal and she was breathing on her own and comfortably.
The therapists resumed her rehabilitation. She was placed upright in the Cadillac chair. It the therapy chair, being upright enables the therapists to apply range exercises which keep her muscles and joints flexible and it also stimulates her skeletal muscles, and there by helping to restore her strength. I want to mention again that there are three therapists: Physical, Occupational, and Speech.
Lisa in the past week was grinding her teeth, and to prevent her from hurting herself, or damaging her teeth she was given a mouth guard. The mouth guard was removed, and after observing her for 5 or 6-hours she was relaxed and apparently adjusted to being without the guard.
Let’s consider the Stevens-Johnson syndrome as something Lisa much less bothered by. The people visiting her tell me that her skin looks terrific, her back is clear, and there is no breakdown of the skin. She is beginning to develop more tone as her arms are ranged to above her head, and her leg movement is with resistance to movement. Richard is continuing to have good talks and information exchanges with the RN’s and Supervisors when he calls the hospital.
Finally, Lisa temperature was 106.7; two days later she is receiving no antibiotics and is marinating a normal body temperature. It speaks to her remarkable resilience.

As further proof of her improvement, Carmen was able to take Lisa in the Cadillac chair downstairs to a small outside patio so that Lisa could feel the sun on her face for the first time since this nightmare began.

Michael’s 8-week check-up was this morning at 10:00 A.M. No biggie you say, check out two seniors trying to get it together and get out the door and make appointment on time. We got there 6 minutes late, but got to blame it on the elevator as it was out of service. You might want to remember that excuse for later use. Let me tell you, Dr. Shapiro, Michael’s pediatrician weighed him at 12 pounds 8 ounces, and 23.5” long. Every measurement they took was in the 75th percentile. Which means, for now, he is in the top 25% of babies at his age. Something else happens at the 8-week checkup. SHOTS! Michael took three. I mean he took three as if to say, “is that all you got?” To my amazement it was not big deal for him to endure. We celebrated at a restaurant after the physical, and Michael seemed none the worse for wear. Kids, ya gotta love em…..

The first picture is of Lisa and Richard. It was sent to me by Linda Thompson of Norman, Oklahoma. (I could have abbreviated it but to type it is like singing a song.) The picture was taken during Lisa’s baby shower on January 2nd in Norman. The second picture is of Michael and Sherry. It was taken last week at his home in Oro Valley, AZ (no song here)

Michael
mlwintory@msn.com

LISA TODAY

2006-03-31T19:56:00.000-07:00

March 30, 2006
37 Days in …
St. Joseph Medical Center
Phoenix, AZ

Baby Michael is seven-weeks old today. He began celebrating the event last evening about 10-minutes before his father came home from a busy day on the job. Michael had just polished off 4-oz of Similac, and started smiling at me. WOW, a first… well almost a first, it was actually a gas attack, and then, he started the fireworks… in the form of huge barf rocket which landed on my chest and covered me from shoulder to waist. Sherry took the baby and I took a quick bath. Michael has been getting along just fine. He was examined by a cardiologist to rule out Long Q.T. syndrome the genetic disorder that was the cause of his mother’s ordeal. He passed the EKG examination with flying colors, but to be certain and rule out the syndrome was not passed on to him, he will be followed for a time by Dr. Sampson his pediatric cardiologist.
I told you earlier the Michael gets very unhappy when he is hungry, and at daily, bath time. Here’s what he likes, #1 when he’s eating, #2 when the bath is over, #3 riding in his car seat (I can tell because, as soon as the car starts moving, he zonks out.) There are many new, practical baby-things since Sherry and I were in the baby business. One of them is a bear with a large mirror on its stomach. The bear is placed on the head rest of the back seat and points in the direction of Michael Car seat. It enables the driver to see him through the rear view mirror, and lets the driver keep tabs on how it’s going. He has a wonderful disposition, seldom is unhappy, and sleeps the night through. At this stage of his care, one couldn’t ask for much more. Now this morning after getting a diaper change he actually laughed and grinned at Sherry. It was a gift from Michael that will last her all day.

Unfortunately, Lisa had an awful day today. It started out with Lisa developing an elevated temperature during the night. A cooling blanket was ordered for her to bring her 104 degree fever down. The fiber covered rubber cooling blanket is a 2-inch thick sheet. The sheet contains water and is connected to a chiller which circulates the water through the blanket. It has three settings to regulate the cooling response: rapid, moderate, and slow cooling. The temperature of the cooling system dropped to 38 degrees. Richard watched while Lisa’s hands and feet rapidly turned blue, and her heart rate instantly went from 120 to 150, and she then contracted into a shivering fetal position. Richard needed to assert himself to the nursing staff to get the required amount of attention in order to get the temperature regulated. And while this was going on, Lisa’s temperature climbed to 106.7 degrees. A physician arrived and decided she had had a sepsis infection (systemic blood infection) from the implanted PICC Line*. The PICC Line immediately removed, a central line was placed in her femoral artery, and antibiotic drugs were administered. With the cooling blanket properly set to 74 degrees and the antibiotics doing what they are supposed to do, Lisa’s temperature returned to 99.6, and that is what it was when I spoke with Richard at 6:30 P.M. today (Friday, 31 March 2006).
So as I sign off, Lisa is once again resting comfortably, her temperature, heart rate and respiration is normal. Richard met with the hospital CEO, and two other upper level managers about the situation, and adjustments in staffing were made on the spot. If you have questions, please write to me. mlwintory@msn.com

Michael

*A peripherally inserted central catheter is also referred to as a PICC line. This type of catheter is placed in the large antecubital vein (a large vein in the inner elbow area) and threaded into a large vein above the right atrium of the heart. Unlike other catheters, a PICC line can be inserted by an IV nurse, rather than a surgeon.
The PICC line can remain in place for many weeks or months, avoiding the need for a new IV every few days. PICC lines can be used to deliver chemotherapy, antibiotics, blood products, other medications, and intravenous nutrition. When the PICC line needs to be accessed, an IV line is connected to the end of the catheter. When it is not in use, the IV is disconnected and the catheter is flushed and capped.

Peripherally inserted central catheter

LISA TODAY

2006-03-29T22:52:00.000-07:00

March 29, 2006
36 days in…
St. Joseph Medical Center
Phoenix, AZ
http://lisalatest.blogspot.com/

Carol is a Specialty Care Unit professional nurse in charge of Lisa’s care during the past few days. In talking with Richard this evening, she reports that Lisa’s condition is stable and she is continuing to slowly improve. The therapy team (physical, occupational and Speech) are also working with her. Lisa was placed upright into a Cadillac chair for two-hours today, and tolerated it quite well. I would tell you more about the chair, but right now you know as much about it as I do. Lisa’s flexibility is being maintained with range of motion therapy and her vital signs are continually monitored. The Stevens-Johnson syndrome will soon be a fleeting memory and everyone is delighted with that “near history.” Lisa’s patient room looks out over a beautifully landscaped lawn and mature Palm trees. It is a view of promise for Lisa.

You may have heard that folks have been taking an active part in Lisa’s care by donating leave time. The Immigration Customs Enforcement (ICE), Voluntary Leave Transfer Program, Screening Committee has approved a request for Lisa to be a leave recipient under the Voluntary Leave Transfer Program. She has exhausted all of her accumulated leave and donations are needed to help her through this difficult time. The minimum leave donation is four hours. Requests to donate leave must be submitted on the "Authorization to Transfer Leave" form, available from any ICE administrative and/or personnel office. All donations forms must include a current T&A Report. For additional information on how to donate leave, employees can contact the CBP/HRM Laguna Niguel, Calif. Service Center at (949) 360-3063. Donation requests can be faxed to (949) 425-4919.

For federal employees choosing to donate time and who are not with DHS, they are asking that you visit www.opm.gov/oca/LEAVE and complete the OPM 630B form. Once completed and signed by the federal employee, the form must go to their respective payroll office. The payroll office can then fax the form to Ania at (602) 379-3845.

The link to the OPM 630B form is http://www.opm.gov/forms/pdf_fill/opm630b.pdf. If you have any questions, please email Melody.Nelson@usdoj.gov.

Michael
mlwintory@msn.com