LISA TODAY

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

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

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

MSNMember.msn.com

LISA TODAY

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

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

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

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

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

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

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

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

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

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

(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

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

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

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

LISA TODAY

March 27, 2006

PART II

34-Days in...

St. Joseph Medical Center

Phoenix, AZ

http://lisalatest.blogspot.com/

Lisa, after spending a restful weekend, was seen by a team of therapists: Occupational, Physical and Speech. She was also seen by the supervisor of the team. These are the three components that will be implemented for the first stage of her recovery. The therapist will be sitting her up; moving her around which this will facilitate Lisa spending more time awake. (I’ll talk about wakefulness a bit later.)
When one is not deprived of one’s faculties, the process breathing is taken for granted. Breathe in, breath out. Stuffy nose? No problem, breathe through your mouth. Mouth closed, okay breath through you nose. Put a trach in place, and then it becomes different, but you know about that. But put a Passé Muir Trach in place and it becomes really different. Lisa now, with the new trach, inhales through it, but exhales through her mouth and her nose. It will enable Lisa to vocalize. Meanwhile her heart and respiration rates are approaching pre-Stevens-Johnson syndrome levels. Although it is observed when Lisa is placed on her right-side the numbers are higher.
Lisa is spending more time awake, and her eyes are open for longer periods of time, and she grinds her teeth which is perplexing; however it must be recognized, she remains unable to meaningfully communicate. She is also exhibiting a small increase of spontaneous movement of her limbs indicating her neuro-pathways are reconnecting at some level. These signs give one hope when one realizes these activities are necessary steps toward regaining consciousness. The staff intends to take 2 – 4 weeks working with Lisa to observe how she responds to therapy. Dr. Kwasneca, Therapy Coordinator will also spend a lot of time with her. The medical staff will introduce sound, smell and touch stimulus and carefully look for “any” response. The stimulus to which she responds will be focused upon therefore Lisa will queue her own therapy.

Michael (Richard's dad)

mlwintory@msn.com

“Lisa Today"
March 27, 2006
34-days in…….
St. Joseph Medical Center
Phoenix, AZ

http://lisalatest.blogspot.com/

A wonderful card from arrived from Ben, Gina and Arnold; friends, neighbors, and colleagues of Lisa. Let me share it with you. It was written by Douglas Pagels, on a card crafted by Blue Mountain Arts:

“Hang In There”

Difficulties arise in the lives of us all. What is most important is dealing with the hard times, coping with the changes, and getting through to the other side where the sun is still shining just for you…

It takes a strong person to deal with tough times and difficult choices. But you are a strong person. It takes courage. But you possess the inner courage to see you through. It takes being an active participant in your life. But you are in the driver’s seat, and you can determine the direction you want tomorrow to go in.

Hang In there… and take care to see that you don’t lose sight of the one thing that is constant, beautiful, and true: Everything will be fine ~~ and it will turn out that way because of the special kind of person you are.

So… beginning today and lasting a lifetime through ~~ Hang in there, and don’t be afraid to feel like the morning sun is shining just for you.
~Douglas Pagels