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
