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
