ST. JOSEPH MEDICAL CENTER
BARROW NEUROLOGICAL INSTITUTE -- PHOENIX, ARIZONA
Hey gang, Richard here from our 2nd home in Phoenix, Lisa’s room at Barrow
Neurological Institute. I’m sorry I’ve been slow in updating. I’d hoped to have more hard news this week but we’ve been in a holding pattern, so I’ll tell you what I know, and with Dad’s help fill you in as more details become clear. I have time to do this now because Michael’s asleep in Lisa’s bed this Saturday morning. Lisa has therapy this morning in about 20 minutes so I thought I’d get started.
This weekend, Lisa’s finishing another round of antibiotics today under the care of our favorite bug doc, Dr. Jones Kumi. The culprit again was Lisa aspirating a small amount of her stomach contents. She vomited when being repositioned during therapy. The balancing act of nutrition, therapy and digestion is complicated by Lisa’s difficulty in closing her larynx tightly enough to seal off her lungs. Lisa’ must receive certain amounts of tube feedings and exercise to protect her from pneumonia, bed sores etc and to advance her recovery. Her nutrition and exercise schedule aids her digestive process, which in turn, keeps everything else …going.
To get Lisa enough calories thru her tube slowly enough to prevent vomiting and its attendant risk of aspiration requires her to be fed from 5:30 pm to about 8:30 a.m. This new schedule has eliminated her lunchtime session which had been putting a large amount through the tube quickly and contributing to the problem.
Because Lisa tends to get nauseous whenever she’s moved, having her stomach empty has been really helpful during the day. Lisa is turned from side to side throughout the night, again to protect against bedsores and pneumonia, but her night staff takes care to avoid problems.
To add another level of protection Lisa’s trach was switched to one that has an expandable cuff to protect against stuff going down the wrong way. The cuff is deflated to let Lisa vocalize as she is able. The result of all this work is that as Lisa and her team finish off this infection, we’ll have in place a new comprehensive plan to prevent another.
Two-weeks ago during Collin and Suzanne’s visit from Norman, Oklahoma, Lisa was getting a scan done to determine if she might benefit from relieving pressure caused by a suspected build up of fluid in her brain. The scan revealed a couple of things. First, that this cerebral spinal fluid (CSF) is not entering the ventricles in her brain, a good thing. Second, the rate at which the CSF is being absorbed back into the body is slower than normal and this is causing an excess of fluid and some pressure. To understand the significance of this, let me flash back.
Some readers have been confused about when and why Lisa’s progress was stopped and her condition worsened. We knew some of this and may now know more. Beginning in the end of April and during May Lisa’s spasticity began to stiffen her limbs and joints. Serial casting was applied by her therapists up at Select Specialty Hospital to try and hold her ankles and feet in a neutral position. Lisa’s doctors suggested an implanted pump to put Baclofin into her CSF was necessary to protect her from the increase in muscle tone blocking her further recovery.
Lisa’s mother and step-father were with me as we witnessed the effect that the rising tone was having on Lisa. It was then we all learned the doctor’s recommendations to implant a pump to administer Baclofen into her spinal fluid. Lisa’s mother and step-father were present with me when the pump was implanted on May 26th. Everyone had the greatest hope that her worsening condition would be relieved so that Lisa could rehabilitate enough to benefit from a move down to the Barrow Neurological rehabilitation unit. Unfortunately, Lisa’s rigidity continued to increase through the first week of June despite a visit from her Uncle Rex and even after the pump’s medicine level was steadily increased.
Lisa did of course move to Barrow’s (BNI) on Father’s day, June, 23rd, but as I settled Lisa into her room that weekend we knew her move wasn’t to begin rehab. The move was to protect her ability to rehab from the spasticity. The Spasticity continued to increase since before that day Lisa’s mother, step-father and I gathered, while her pump was implanted. Only much later the advance of her spasticity was stopped (not relieved, mind you) only by adding clonodin to the Baclofin in her pump in just the last few weeks.
Along with the increase in Lisa’s muscle tone came a decrease in her ability to respond to questions with nods and eye blinks. The decrease hasn’t been relieved by the clonodin and appears to be independent of Lisa’s spasticity. This troubling development means that unlike back in May, we don’t know at what level Lisa’s now functioning. Her recent ability to respond to requests to kick her legs offers the first evidence of responsiveness at any level since the beginning of July.
So with this background, back to the cerebral spinal fluid (CSF) pressure build up in Lisa’s brain. This pressure may be a contributor to Lisa’s diminished and delayed responsiveness. Medical studies and the experience of Lisa’s doctors suggests a pressure sensitive valve implanted in Lisa’s head and draining thru a tiny flexible tube in her abdomen can safely relieve this pressure and perhaps help regain some of her function.
We’ve been waiting the return of Lisa’s neurosurgeon, Dr. Theodore and his analysis of the scan results to learn his thoughts on the situation. If he recommends relieving the pressure, a “shunt” can be implanted and hopefully, enabling Lisa to move forward within a week or so.
One way or the other, once this is resolved, Lisa’s pump will regain center stage as the mix of baclofin and clonodin will continue to be adjusted to see if we can not only stop the increase in Lisa’s muscle tone, but roll it back. In her present condition, Lisa’s ankles in particular remain at serious risk and her overall rigidity will prevent her from making significant improvement.
Other treatments are still available and we’re awaiting final approval for Lisa to receive hyperbaric treatment here at St. Joseph Medical Center sometime in November to December.
Some family and friends have felt that their inability to be with Lisa for a variety of reasons might have been responsible for the setback in her recovery. Nothing could be further from the truth. Lisa’s downturn began when she was surrounded by family; mother, step-father, uncle, nephew, father-in-law, mother-in-law as well as her son and husband.
Of course, the absence of all of these folks and other family and friends at one time or another has no more worsened Lisa’s condition than their presence was the cause for the downturn starting or their absence was the cause for her recent improvement.
The fact is that Lisa has suffered a very serious injury and its impact, assessment and treatment require medical interventions like adding clonodin to her pump. Family and friends can strengthen these interventions through prayers and support for those providing the care and my efforts to make the right decisions, not distress (or worse) over their own absence.
Well, it’s now Sunday evening. Lisa, Michael and I spent most of the day outside in the lovely courtyard here in neuro rehab enjoying the marvelous weather. Michael can now stand on his own holding himself up with only one hand leaving the other free to grab and destroy anything in reach. The staff, other patients and their families are quite taken with his ability to speak his mind. He frustrated my “cry and we leave” policy in Mass last night by just amiably “chatting” but never crying during most of the service. Our friends and Lisa’s Rangers Bruce and Laura were ready to safeguard Lisa during the Mass but their ever ready service wasn’t required..
Father Milt is more than understanding. Earlier, when Lisa and I were working out all this, she’d been willing to have the policy of “cry and we leave church” as long as we followed her policy of “we go to church”. When Lisa and I started dating she was attending the Crossings in Oklahoma City, long since having abandoned the church of her youth.
We both want to raise out child in a religious home. We’d run out of time for the classes to have the Catholic wedding we had originally planned. We’d bought all the books; it was my fault I didn’t get with a priest in time. But Lisa wasn’t letting me off so easy with our son. We’d asked our friends Jack and Napua Davis to be Godparents and we’re expecting Michael to be baptized here in St. Joe’s in November. Lisa will be pleased, I’ve kept my word.
