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.)