Neuro rehab, barrow neurological institute, st. joseph's hospital and medical center, phoenix, az
I'm happy to report that Lisa's had the best few days in therapy she's had in months. For the first time since Lisa's spasticity got out of hand in mid-may requiring the implantation of her baclofin pump, Lisa was able to initiate slight but oh, so encouraging, volitional movement in her legs on Friday and again today. Also, Lisa's new physical therapist Rosemary and I both felt and observed Lisa respond to a request to turn her head to her right (against the pull of her spasticity) with a slight but perceptible turn. While Lisa's still not able to again consistently blink or nod yes/no answers yet, and she is still far stiffer than she was before her spastic quadriplegia struck, these are very promising gains.
I'm like you; I've gotten spoiled by my dad's postings. Even when I've written the update, I've forwarded it to him, he purtys it up and posts it so that I can send it while still in Lisa's room in at bni. Since he won't be back till the end of the week I've had to wait till I'm back in Tucson and on his computer to post the good news from the last week.
Several factors have contributed to this small but significant upturn.
First and foremost, Dr. Kwasnica's groundbreaking strategy of adding clonodin (I'd originally understood it was clonopin) to Lisa's baclofin pump has begun to help her more than the baclofin alone. Dr. Kwasnica ordered Lisa's pump meds increased another 10% on Friday. This is consistent with Dr. Kwasnica's strategy to "find the ceiling" where Lisa will hopefully get relief from her spastic quadriplegia through these meds.
Lisa's muscle tone has risen and fallen based on whether she's sick or uncomfortable. So, it was also important that last week Lisa completed the course of antibiotics to clear the most recent infection in her lungs. This permitted the removal of the pic line (the souped up IV line dad's previously described).
While Lisa is breathing room air on her own, the mini-trach inserted several weeks ago is now available to help protect against further infections. More than just another "hole" in Lisa, this critical device is currently capped, and doesn't prevent Lisa from speaking when her condition will permit. In fact, no longer "stuck" in silence, Lisa has been vocalizing more in recent days, mostly when startled and when stimulated but still using her vocal cords again.
Contributing to Lisa's comfort and rehab, she also had the most recent serial casts removed from her feet and ankles last week. Reece the Zen serial caster had once again done his magic and gotten Lisa's feet and ankles close enough to a neutral position for her to use the standing frame in her tennis shoes again. New splints are being custom made for Lisa by Sam, the Reece of spring loaded splints (called AFOs, I know it's adjustable something orthotics, I keep forgetting the "f"). Sam made the splints Lisa has been using, but as her feet now turn in as well as down, the original AFOs put too much pressure on the thin skin on Lisa's feet (who knew Lisa had anything but thick skin?). With an extra hinge or spring, the new splints should offer forgiving resistance against the spastic pull. Before leaving though, Reece did put a new serial cast on Lisa's left wrist to prevent it from developing crippling contractures. Based on how well she slept over the weekend, this cast was much more comfortable for Lisa than the wrist and arm splints it replaced.
So what was the result of these positive developments? First, Trent, Lisa's caring and steadfast occupational therapist, reported Lisa had been initiating volitional movements in one of her arms for him. Trent wants to see more before he calls it a trend, but it's a good sign.
Next, in Lisa's physical therapy with Rosemary, Lisa's new and enthusiastic physical therapist, big little things happened. Rosemary's hair is red like Lisa's and her flattening vowels like pancakes reveals her to be a Chicago native before you ask. Rosemary scored points immediately by talking with Lisa's therapy crew from up at select to see what Lisa doing before the spasticity kicked in. Based on input from our friend Marty, Rosemary sought to get Lisa in a gravity neutral position to see what she could do. Adding a new trick to Lisa's therapy, Rosemary placed Lisa on her side and lifted her leg in a sling thus freeing her from limitations imposed by gravity and her muscle tone. Rosemary than asked Lisa to kick forward and she did. Several times. To make certain this was intentional effort, Rosemary asked Lisa to kick backwards and she did. Several times. Today, Rosemary told me Lisa was able to kick more times at her request. Increasing stamina is another good sign.
Rosemary also got Lisa back into the standing frame dad's described in earlier updates. This thing raises Lisa up from a sitting to a standing position permitting her to bear weight on her legs, feet and ankles the way God intended. Wonderful stuff for fighting spasticity and contractures. Lisa's heart rate was steady, she was alert and it was while I was standing behind her holding her head upright she turned her head right at Rosemary's request. I felt it, but didn't say anything so I wouldn't be accused of crazy husband stuff when Rosemary said, "I'd swear Lisa turned her head!" I know frequent readers remember this is how Lisa was communicating with us before the spasticity got out of control, so again, a good sign.
Our friend Yolanda stopped by on Friday as she does through the week and helped Lisa with her range of motion exercises. She feels the tightness but also feels the improvement. Yolanda's a pretty special person, we met her while she was a rehab tech up at select, and after she left up there I asked she continue to work with Lisa. Despite having recently diagnosed serious illness in her household, her love for Lisa has led her to become an important member of our family. Her efforts along with Lisa's Rangers have kept Lisa limber enough to participate in Rosemary and Trent's therapy. I hope you'll keep her and her family in your prayers.
On other fronts, we're still waiting for the internal review board to consider Lisa's doctor's requests to use st. joe's hyperbaric chamber to treat Lisa. Before we re-name them the eternal review board, I remind you we're not ready for Lisa to get hyperbaric until we see where the new pump mix gets us.
Lisa will receive a pretty sophisticated test today-Wednesday-to determine if in fact she has excess fluid exerting pressure on her brain. I mentioned in my last update that relief of pressure, if it's there, can produce some improvement in some patients. As promised, Dr. Theodore stopped by and visited with me about the procedure and the unique limitations he and his colleagues are working with because of Lisa's defibrillator and the level of baclofin Lisa's receiving in her cerebral spinal fluid. This test they've settled on will tell Lisa's doc's what they need to know safely and soon. I'll keep you posted.
I must say though that Dr. Theodore is something else. He's a brain surgeon who looks like he could have played linebacker in college. But, contrary to what I expected, he's soft-spoken, incredibly patient and thorough with his explanations and makes it clear he has spent some real time thinking about Lisa as a person, not just a patient. There are many blessings we've had along with the bad stuff but certainly, starting with Dr. Kwasnica, who got us here in the first place, the humanity in addition to the competence of Lisa's doctors, therapists, nurses and aides continues to gladden and humble me.
And just to round out the good news, Maggie the wonder dog has bounced back from her first round of chemo for her lymphoma and is doing great. Our great neighbors, Jim and Ann, nursed Maggie while I was with Lisa and fed her meds in braunshwieger (sherry's disgusting but effective suggestion) and they are going to bring Maggie up for a visit this weekend.
The remission of Maggie's cancer is just in time, Lisa's favorite nephew; Colin and her sister-in-law Suzanne are coming for a visit for Colin's birthday and our wedding anniversary this weekend. Dad and Sherry will be back with Michael from wrapping up their affairs in Illinois to officially start their new lives with us in Tucson, so after a strenuous week in therapy Lisa will be able to spend time with kids, kin and canine, a combination that's hard to beat. r
