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
