We’re still here. Easing quietly into Week 5. Finally time for a brief summary:
I brought Owen to the hospital after a long night of fitful tremors and extreme spasticity. The spasticity I’ve seen before – but that was pre-baclofen pump implant. The tremors were new. My first suspicion was the pump – some element of it was no longer working to control his body.
Upon admission, the ER discovered a mild pneumonia – and we all assumed that his increased ‘tone’ was due to his lung infection. They admitted him, moved him to Critical Care and treated the pneumonia. We all expected the spasticity to rein itself in once his infection improved. It didn’t.
Often, spasticity elevates during infection and can sometimes stay elevated for a period of time – our various experts advised (and we concurred) increasing the dosing of the intrathecal baclofen. Increases in the medication didn’t help.
Next step was to investigate the mechanisms of the pump. Was it working right? Was the catheter connected? X-rays, CT scans, dye studies, spinal taps – all were done to see if things were hooked up correctly. They were. (Chronology is a little vague in hindsight – some of these tests were done earlier, some later.)
So next plan was to send boluses of medication via the pump. To see if Owen would respond to a one-time larger dose. He did. Dramatically. He fell into an unrouseable sleep for many hours with very low blood pressures. Prevailing thought was that, while it was an undesirable outcome, the pump was indeed working. Maybe; when he woke up, the tremors, spasticity and discomfort returned. So, they increased the dose in the pump.
He descended into another ‘somnolent’ episode. Again fiddling with the pump. Again fell into a deep sleep. Between these episodes, continued tremors and spasticity. Up, down, up, down. Back and forth to the CCU.
(Which, by the way, is a deeply unsettling place. The Critical Care Unit is focused on stabilization, at any cost. They were clear with us that their focus was on short term interventions to raise his blood pressure. Often this resulted in what I thought were aggressive, violent measures – arterial lines, multiple IVs, nasopharyngeal tubes, more and more and more medication. He needed it, so fine. But very difficult to watch. Can’t even imagine what it must feel like.)
So we’re back up on the ward again, out of CCU. He’s still up and down, but last time he simply woke up without intervention – so as he sleeps right now, as I write, they are waiting to see if he can wake up on his own again. He’s been asleep for almost 14 hours – longest he’s gone is 24. Lowest blood pressure last night, if you care about these things, was something like 58/36. We’re all starting to wonder if this isn’t just how he normally is. (Well, ‘normally’ is not the best word. Pre-hospitalization, but post-implant, Owen started sleeping very deeply – so deep, he would not wake up when I prepared him for school in the mornings. Diapering, changing clothes, feeding… he would often wake up on the school bus. Perhaps his ‘sleeps’ were similar somnolent episodes. Just not monitored. ‘Normally’ would mean not sleeping at all, due to uncontrolled, unmedicated spasticity.)
No one can explain why he is not responding to the intrathecal baclofen in terms of spasticity, and seems overmedicated at the same time. I’m not terribly surprised – we’re mucking around with the brain, with cerebral-spinal fluid, and a young boy with an (overall) undiagnosed condition. I have nothing but admiration for the doctors who are as perplexed and frustrated as we are – and who clearly want to help him out of this mess.
Long term plan, at this point, is to wean the seemingly useless and perhaps harmful (to Owen) intrathecal baclofen while increasing oral medications. Eventually, hopefully, his spasticity will ease without too much sedation, the pump will be off, and we can have it removed.
