LISA TODAY - SUMMER 2008

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

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

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

Lisa Today -2007, October 28

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

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

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

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

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

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

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

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

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

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

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

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