Lisa Today - 27 December 2006

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

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

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

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

Nina Candol: (949) 425-4919

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

Please accept our best wishes for the New Year!

Michael L. Wintory
mlwintory@msn.com

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

Lisa Anne Wintory's Christmas

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

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

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

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

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

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

Lisa Today - 16 DEC 2006

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

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LISA TODAY - 26 NOV 2006

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

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

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


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

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

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

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

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


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

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

Michael (mlwintory@msn.com)

Lisa Today --- Thanksgiving 2006

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lisa Today - 11 NOV 2006

Update, 03-06 Nov 06

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

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

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

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

Best wishes from Tucson & Phoenix!

Michael
mlwintory@msn.com

Michael Update - 31 OCT 2006

Long QT Syndrome, Type 3

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

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

What is the QT Interval?

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

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

What are the symptoms of Long QT syndrome?

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

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

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

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

How can Michael be Protected?

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

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

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

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

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

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

**Hugs and kisses and Love, Love, Love

Addendum:

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

Sherry Wintory

– mlwintory@msn.com

Lisa Today - 27 OCT 2006

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

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

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

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

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

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

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

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

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

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

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

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

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

Michael – mlwintory@msn.com

LISA TODAY – 22 OCT 2006

ST. JOSEPH MEDICAL CENTER

BARROW NEUROLOGICAL INSTITUTE -- PHOENIX, ARIZONA

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lisa today, October 4, 2006

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

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

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

Several factors have contributed to this small but significant upturn.

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

Lisa update September 21, 2006

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

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

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

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

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

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

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

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

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

LISA TODAY – SEPTEMBER 17, 2006

Barrow Nurological Institute – Phoenix, Arizona

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

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

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

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

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

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

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

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

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

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

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

Posted for Richard

(Picture is of Yolanda with Michael)

Michael

mlwintory@msn.com

LISA TODAY - 13 SEP 2006

Lisa Anne Wintory
Today – September 13, 2006

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

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

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

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

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

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

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

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

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

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

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

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

Warmest Regards from Arizona,

Michael
mlwintory@msn.com

LISA TODAY – 5 SEP 2006

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

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

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

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

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

Michael mlwintory@msn.com

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

Lisa Today - August 13, 2006

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

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

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

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

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

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

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

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

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

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

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

LISA TODAY – 05 AUGUST 2006

Two Happy Guys

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

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

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

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

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

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

Till next time...

Michael - mlwintory@msn.com

LISA TODAY - 23 JULY 2006

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