“So how’s Lisa doing?” July 9, 2006
My dad’s updates have been such a blessing to all of you and to me as well. They let us all stay pretty current so that folks who visit the website or get updates directly, can, when they bump into or call me, just hear the latest to be up to speed. But dad thought aL more comprehensive review of where we are, how we got here and what we believe the future holds from my point of view would be helpful. Also, I wanted to open a q and a dialogue for folks to ask follow-up questions without worrying about how many others have asked the same thing. Our goal is to keep those who care, are offering prayers and support and are reluctant to “be a bother” to be as informed about how Lisa’s doing as if they were here.
At this moment, 12:05 pm on Sunday July 9, 2006, Lisa’s down the hall getting a shower with Kesha and Andrew. Michael is hanging here with me deciding –ooops Lisa’s back.
Ok, it’s 1:22. We’ve gotten Lisa dried, lotion applied, her hair brushed and positioned her using pillows and weights to try and push back from her becoming the pretzel the injured parts of her brain are trying to make her into. The process was delayed by Michael insisting on attention, formula and finally, thankfully, sleeps, next to his mom who’s now watching me write this for you all.
This day started like most days for Michael and me visiting Lisa at the Barrow Neurological Rehab Wing. Lisa’s room is about 30’ by 20’ with a big window looking out over a large, lovely courtyard with big shading mesquites, grass yard, flowering shrubs, volley ball court (never used) benches and seating around the courtyard and a porch area with misters to make the phoenix summer bearable. Opposite of the porch area are some planting beds in raised boxes used by the occupational therapists. Some habanera peppers are clinging to life with the indifferent watering they are receiving.
The wall along side these windows hosts Michael’s crib and the pullout sleeper chair where Michael and I sleep (welcomed interruption here for calls from Lisa’s brother David sharing some really great stories from their childhood (I’m sworn to secrecy) along with an update on Lisa’s niece and another call from my mom) for the portion of the week we get to spend with Lisa, usually from Thursday night to Monday morning depending on my work schedule. The “family friendly” approach dr. Kwasnica and Barrow Neurological Institute (BNI) rehab take to rehab has really helped us start building the life together that was so catastrophically interrupted on February 23.
Speaking of interruptions, this one is of the welcome kind: one of our many new friends, Ricardo, a chaplain here at St. Joseph Medical Center, just stopped by for a prayer and blessing. Ricardo’s wife recently had a major surgery from which she’s recovering creating an even greater bond than his genuine compassion and kindness would have generated. I decline communion since Lisa and Michael and I were able to go to Mass together last night for the first time since I got back from Oklahoma. Father Bill greeted us warmly and Michael repaid him with several out of the blue screams during particularly inopportune times during the Mass. By the time I jumped up he immediately calmed down... just long enough for me to sit down again. Little wonder Father Bill came to us to administer communion, he probably wanted us out of there before any more disruption! Just kidding, Father Bill was just wonderful about it, I’d always told Lisa we wouldn’t have one of the crying kids in Mass that I’d walk him out before he’d disrupt a service, which just prompted one of Lisa’s patented, “we’ll see” laughs. Obviously, she and Michael conspired to come with a “scream and stop” strategy that has just been the most recent in a series of humbling fatherhood moments.
Where were we? Oh, yeah, interruptions. I’ve changed a couple of diapers, started a load of Lisa’s laundry, and we’re “good to go again.”
So our little family started our day after a pretty restful night. Lisa’s nurse, Joni turned Lisa every couple of hours, kept her clean and dry and made sure her arms and neck were positioned as well as can done. Her arms now have enough flex that I could position them last night so that Joni gave her blessing to letting Lisa go without the splints which I’m sure contributes to her sleeping better. Still she needs pain meds to get through the night.
Michael usually is the first up around 5:30, I buy a few more minutes by stuffing the pacifier back into his mouth, this lets me shake up his first bottle of the day, the first of 4 so far (it’s only 3:16). I shower with him in the bathroom to keep him from waking Lisa (or the dead, he’s that loud), dress and push Michael around the corner to the hospital’s Starbucks where Sonny fixes me up. We then dress Lisa, and all go outside to enjoy the morning before the heat becomes too much.
This is Sunday and the only day Lisa has “off.” Monday through Saturday are loaded with the intense 6 a day therapy sessions (Speech by Debbie, Physical by Tom and Occupational by Trent), two hours of range of motion exercises by our friend and ally from up at Select Specialty Care Hospital, Yolanda. Then, on the days Michael and I aren’t here, an hour or so visit from one of “Lisa’s Rangers” our local friends who got Lisa through the early stages of our nemesis Spasticity with their range of motion exercises and now continue to look out for her at Barrow Neurological Institute (BNI).
Lisa also has regular visits from Dr. Kwasnica and Suzanne, her nurse practitioner, assessing progress and increasing the dose of Baclofen, kind of our David against the goliath of Spasticity. This is done with a computer and kind of a remote control placed over the place in Lisa’s abdomen where the Baclofen pump is implanted.
Lisa also gets twice weekly visits from Reece, the king of serial castings. Reece is kind of a Zen craftsman, medicine man reclaiming Lisa’s ankles from the grip of spasticity, which had turned them completely over, preventing Lisa’s therapists from standing her up for fear of injuring her. Reece spends 2 hours to create a cast that firmly moves her stubbornly twisted ankles without blistering her skin only to cut that cast off in a couple of days and do it all over again, claiming the ground he’d gained in moving Lisa’s ankles back to a neutral position. For Lisa and her therapists though, the benefit was immediate: Lisa was able to get back on her feet in therapy.
Twice a week, Lisa is woken up with a massage from Erin. These started as a Mother’s Day treat, but Dr. Kwasnica believes they’re so important to Lisa’s recovery that she’s encouraged (unsuccessfully so far) blue cross to cover them. No matter, Erin, along with Yolanda, and Lisa’s Rangers are in for the long haul. I’m of course leaving out the nurses and aides who fill in the rest of Lisa’s time with medicines, feeding her through her PEG tube, protecting her from infection and bedsores by keeping her turned and cleaned until Lisa can do these things on her own.
With all the activity, you might think Lisa would get lost in the shuffle; far from it. BNI is a place where people get better. Lisa is surrounded by positive, confident, competent professionals and friends who have rallied to her cause with program director Christina Kwasnica, M.D. leading the way. But I get ahead of myself, how’d we get here?
On February 23, 2006, Lisa was finally feeling well. She’d had Michael a couple of weeks before and had been sore after two days of trying to deliver him naturally and finally accepting her obstetrician advice and delivering him by C-Section. By the 23rd her incision was healing nicely, her physician advised just earlier that day. Breast feeding had been complicated with a common infection and tenderness but it was resolving and the pain had subsided.
My step-mom, Sherry had just flown in and Lisa was really looking forward to the help. Sherry’s a family nurse practitioner and has 4 young grandkids and is as steady a hand as you could hope to have in a family. Lisa and Sherry had really hit it off the first time they’d met and a great visit the previous thanksgiving in Sherry’s and dad’s home had solidified Lisa and Sherry’s plan for Sherry to take time off from work to come help the week following the 23rd. The various post-birth difficulties that Lisa shared with sherry lead to a fateful and life-saving change of plans. Sherry moved her trip up to right after Lisa’s mom and step-dad left and thus was sitting next to Lisa when her heart stopped.
We still don’t know with absolute certainty what caused what happened but the best judgment of Lisa’s physician is “long Q-T Syndrome, a shockingly rare genetic condition that was present in Lisa in its rarest form. The syndrome claims most of its victims early in life. For Lisa, it appears that giving life, childbirth, awoke the killer in her DNA. In any event what did happen is that without any warning whatsoever, just after we’d finished eating pizza and were about to watch the Olympic ice skating finals, Lisa’s heart just stopped.
Sherry, sitting next to Lisa, first noticed something was terribly wrong and called me from the kitchen. Lisa’s eyes were wide open but fixed; she was drawing only gasping breaths and was completely limp. Sherry’s training and experience kicked in and she had us start CPR. I had to pull/drag Lisa onto the floor and only at sherry’s insistence did I do compressions hard enough to be effective. By hard enough, I mean I thought I was going to break ribs. Believe me; the CPR classes many of us have attended do nothing to prepare you for the event itself. If sherry hadn’t been there Lisa would have died that night. As it was, we did CPR until the EMT's arrived. Their efforts to shock Lisa’s heart into rhythm failed and so they continued CPR until we got to Emergency where her heart was restarted about 20 minutes after it stopped.
We now know more about all of this. The syndrome is also known as “sudden death syndrome” with good reason. The heart goes into ventricular fibrillation. Unlike a “regular” heart attack where the heart is still moving blood, just not very well, a “v-fib” doesn’t allow any blood and thus, life giving oxygen to move at all. The result is unconsciousness in 3-5 seconds and death in as many minutes without immediate intervention, of the type sherry started. CPR in a “regular” heart attack is effective even when not done well because the heart’s still pumping. CPR with a heart in v-fib is the only thing moving blood and oxygen through the body. For oxygen dependent organs, CPR simply isn’t enough. Of these none is more dependent than the brain, which stores neither oxygen nor sugar. Thus, the loss of oxygen damages the brain quickly and forever. Different parts of the brain use oxygen at different rates and therefore suffer injury at different levels.
As Sherry and I began to realize how horribly Lisa was injured we were convinced we had failed her when she needed us the most. It was months before we had any sign we done Lisa any good. That sign came when Lisa’s speech therapist up at Select Specialty Care Hospital, Maureen, and her occupational therapist, Connie helped Lisa begin to communicate through nods and head shakes. Dad’s updates detailed those interactions so I won’t repeat them other than to say they proved Lisa’s memory, values, sense of humor and steadfast determination to get home to us are intact.
Dr. Kwasnica provided the explanation: while the back portions of Lisa’s brain that control muscles, consciousness and coordination are big o2 users the front part of Lisa’s brain, where that which makes Lisa lives uses comparatively less o2. Thus, while we weren’t able to move enough o2 for the back portion of the brain we did protect her frontal lobes, liver and other vital organs.
Early tests showed that while Lisa suffered significant injury to parts of her brain her frontal lobes were intact. There is still a significant consequence though to the injury Lisa suffered: spasticity. Those injured portions of the brain that controlled Lisa’s muscles, still continue to send electronic messages down the spinal cord, only now the messages are malignantly simple: “clench”
We’d been told from the beginning about this condition, that it would, sooner or later, strike Lisa and that we wouldn’t know when or how severely but with her degree of injury it would be significant. So, like kids of my generation practicing for a nuclear attack by kneeling in the school hallways with our heads tucked between our knees (kissing our asses’ goodbye, we later joked), our family and friends moved Lisa’s limp arms and legs in the manner directed.
When the Spasticity hit, and muscle tone in Lisa’s arms, shoulders, neck, jaw, lips, ankles went from limp to stiff to rigid, Lisa lost precious ground she’d gained. Misguided efforts to “encourage” Lisa to speak had already caused her stop trying to coordinate the many different muscles necessary for the effort. Now, Lisa, fully aware of the progress she’d made, lost her ability to nod yes and no, to move her arms and torso. None of us can know the frustration she must feel. Even her ability to consistently blink “yes” answers has been overwhelmed by the discomfort and pain brought on by the tightening of her muscles and joints.
Slowly, despite the best efforts of Lisa’s Rangers and her therapists, her range of motion decreased, and muscles began to contract and shorten. Her wrists and ankles in particular rotated in toward the muscles that control them as they tense and hold. Seeing Lisa’s frustration rise as her abilities decreased, Dr. Kwasnica knew it was time to be decisive. It was time to get Lisa over to Neurological. Rehab, not to start rehabbing but to reclaim her ability to rehab at all, before Lisa’s frustration and the spasticity got beyond our reach.
And so, on father’s day weekend, Lisa made her move to BNI. After a week of assessments, evaluations and testing, her team developed an aggressive plan focused on breaking the grip spasticity has on their new patient.
The attack has three prongs: first, to use the recently-implanted Baclofen pump to bathe Lisa’s spinal cord with a steadily increasing amount of the powerful drug that blocks the errant signals from Lisa’s injured brain causing the problem - once enough is being administered. Second, Botox injections, aimed at using the neurotoxin to offer quicker, short-term relief for Lisa’s ankles and left wrist, shoulder and neck until the Baclofen can reach therapeutic levels. Third, a series of casts on Lisa’s ankles to immediately begin to move her ankles back to a neutral position and permit her therapists to get Lisa back on her feet, a necessary element of other efforts to break up the rigid muscle tone in other parts of her body.
The results so far are mixed but promising. Lisa’s ankles are dramatically better and are near their original position. This will allow the casts to come off and permit less bulky and invasive splints to protect her gains. Baclofen and Botox work more quickly at lower levels on lower limbs, so this is expected and welcomed. The success also confirms the longer term effects we can expect in her upper extremities where progress is slower.
In Lisa’s upper body, Spasticity, like some expanding glacier stubbornly resists the Botox and will only yield to greater amounts of Baclofen. The good news, according to Dr. Kwasnica, is that the Baclofen will at some point reach a level where it will, like a warming climate ending an ice age, melt the tone out of Lisa’s muscles. The fact the medicine is all kept within the cavity containing and surrounding her spinal cord means the levels can be increased without exposing the rest of her body to the medicine and any possible side effects. This is important because Lisa will need the Baclofen pump’s protection from spasticity the rest of her life.
So for now, we are in something of a stalemate, waiting for the Baclofen to reach a therapeutic level, while using advanced range of motion exercises to keep the positions the Spasticity pull Lisa’s muscles in from shortening them. Lisa’s therapists continue to use new splints, exercises and stretching to buy more time.
Once this battle is won, what’s the next struggle? More about that once me get Michael home. It’s Sunday night, about 7:30, Lisa’s resting comfortably and we’ve got a heavy docket in the morning.
Richard
