All I Want for Christmas is a Baclofen Pump!

I think I need to catch up the story line a bit here...after the disappointing results from two different Deep Brain Stimulator (DBS) placements (and many, many adjustments, rounds of both physical and occupational therapy) and our frustrating week of a baclofen trial in July, we were all a little weary of thinking about treatment options. We shared our frustrations with Dr. Marks at a follow-up appointment in August, and he suggested an alternative test which would involve an out-patient procedure where a single dose of baclofen would be injected into the cerebrospinal fluid (CSF). This test could let us know if baclofen might have a positive impact on Adam's spasticity. Long story short, Adam had the out-patient procedure the next day, results were very encouraging, and a plan for implanting a baclofen pump was set.

That brings us up to this trip. Yesterday we arrived in Fort Worth for Adam's pre-operative appointment, in preparation for Intrathecal Baclofen Therapy (ITB) surgery. If you want to learn more about ITB, here is the link to the manufacturer's website: http://www.medtronic.com/patients/severe-spasticity/therapy/ 

Our day today began with check-in at 5:45 am, surgery lasted from around 8-9:30 am. Following the surgery (which went according to plan), for most of the day today Adam has been sleeping. This actually worked out fairly well, as he was supposed to stay flat on his back for 24 hours, to try to avoid spinal headaches, shifting of the catheter, etc. As of this writing (around 8 pm), he isn't really eating or drinking yet, still enjoying a lovely saline solution via his IV. And though he has had some short stints of alertness, he then returns to sleepy-time. The team assures us that this is very normal, and that in addition to the body's reaction to anesthesia and surgery, Adam is also getting used to a steady stream of baclofen in his body. All of these events compound to make for one drowsy young man.

The hope for tomorrow is that Adam will be more alert, and ready to let us know if he notices any differences in his spasticity following the surgery and initiation of the baclofen therapy. He is currently on a fairly low dosage, and it may be that the dosage is adjusted before we leave the hospital. He will likely have additional adjustments to the dosage after his body adjusts to the therapy.

The hope for tonight is that we can all get some very much needed rest!