Texas-sized Christmas

We have never been down at Cook's near the Christmas holiday.  They go all out with decorations - inside and out.  The pictures here are just a small sample.  The circle drive out front has a 40 ft tree with some decorations that are themselves the size of a person.  Not a live tree, more of an sculpture/art work version of a tree.  Then in front of the main entrance there is a 25 ft Santa in his own little candy land/toy land.  It's a big state so they need a big Santa.

The Poulter's happened to be passing through town from the other direction on our first day here (yesterday).  Here's Pat and Peggy not being menaced at all by the Lone Star sized Santa.  Pat and Steve couldn't stay long and Adam was still dozing from surgery, but it was nice of them to drop in.

Here's a shot of the big atrium inside with tree, candy canes, snowman with list, and a more human size Santa thrown.  Santa wasn't in while we were there so we didn't get to sit on his lap.

What a difference a day makes.  Adam has been his old self today.  He hasn't napped, has eaten well, has been sitting up a lot and was even up and around some.  The main difference from last time is the absence of the severe 'spinal headache' type pain.  He has some discomfort around the incisions and such, but at very manageable and expected levels.  We expect to be able to go home tomorrow.

The pump is turned on and he was getting a small starter dose for most of the day.  The pump is currently set to 100 units of medication per day.  Even at that level he has noticed some more control of his hand and he was able to stand flat on his left foot briefly.  A 'high' setting might be 600 units per day.  This evening they bumped him up to 150 and assuming that works out okay, then to perhaps 200 in the morning.  That is the likely level they will send us home with at this point.  Then we'll come back in a couple weeks for a follow-up.  The trick will be to find the sweet spot where the spasticity is as relaxed as you can get it without turning the rest of the body into too much of a noodle (the Baclofen is a muscle relaxant).  The test we had last August where he was quite a bit looser for a short while was a 100 unit injection, but that was all in one quick shot, so it would be equivalent to something higher per day than these initial levels were at today.

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!