Here we go again. Another baclofen drug reduction is happening later this morning. Sure, I’m excited to see if anything positive comes of it, but I’ll be a nervous wreck for the next few days. By now I’m sure you all know the drill and I know I’m being redundant. It just helps to write about it. It takes the edge off. It let’s me visualize my thoughts (and, for once, it doesn’t involve buxom women).
So, for a brief recap…
- Ryan began the year receiving 425 micrograms (mcg) daily (or 17.7/hour).
- This will be Ryan’s sixth reduction in just 10-1/2 months, with five of these coming since June.
- He is currently at a rate of 225 mcg.
- He will be taken to around 200 mcg today (8.3/hour). A 12.1% incremental reduction.
- This will be a 53% absolute reduction since the beginning of the year.
- If all goes well, I plan on keeping with this aggressive schedule and doing another reduction in December (likely around 180 mcg).
My goal is for Ryan to eventually be free of baclofen altogether. Or, maybe to the point where it’s so low that he can get it through his g-tube, and crossing the blood-brain barrier is less of a concern.
Speaking of his g-tube, I had Sue order a different, low-profile style. He now has one that is a single piece, with the feeding tube attached to the flange (see picture on right). We went with what’s called a “Mic-Key”. It is nothing more than what is referred to as a “button” (see photo on left). From there, a removable tube is added when Ryan needs food, water, or medications. I see it as having several advantages, but two I felt were most important
were the elimination of clogging and greatly reducing risk of injury when exercising him (I need not worry about the tube being pulled on or out).
As you look at the photo (left), the bubble is inflated (through the side port) with distilled water after it is passed through the abdomen wall. This inflation holds it in place. The only part outside his body is the flange/button and side port. Making this change to a new g-tube is an easy procedure and I’ve done this a few times in the past. The primary concern is keeping the incision from closing over, so it must be quick.
I swear, in many ways this feels like a restoration project. You know, I suppose it is just that…[poll id=”58″]
- Baclofen Reduction Again Today (ryansrally.org)
- Today: Baclofen Reduction Again (ryansrally.org)
- Baclofen Reduction Today (ryansrally.org)
- Baclofen Reduced. UTI Found. (ryansrally.org)
- Baclofen: So Far, So Good (ryansrally.org)
- Update: Baclofen, YGR!, UTI, Rash, Store, Sleep Study (ryansrally.org)