LISA TODAY - 23 JULY 2006

How’s Lisa doing? July 19, 2006

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

LISA TODAY – 14 JULY 2006

“So how’s Lisa doing?” July 9, 2006

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Richard

LISA TODAY

LISA

TODAY
July 04, 20006

Barrow Neurological Institute

Phoenix, AZ

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

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

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

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

There is an

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

Meet Heath

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

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

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

On behalf of Lis

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

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

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

Until next time…

Michael

mlwintory@msn.com

LISA TODAY

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

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

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

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

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

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


Till next time….


Michael
mlwintory@msn.com

Lisa Today

June 18, 2006
Phoenix, AZ

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

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

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

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

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

Till next time,

Michael
mlwintory@msn.com

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

Michael today, June 19, 2006

LISA TODAY

June 12, 2006

Phoenix, AZ

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

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

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

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

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

Michael

mlwintory@msn.com

LISALATEST.BLOGSPOT.COM

LISA TODAY

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


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

LISA TODAY

June 5, 2006

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

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

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

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

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

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

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

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

Michael

mlwintory@msn.com

LISA TODAY

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.