Later this morning Ryan will be twenty-four hours out from the decrease. He is now at a dosage of 199.7 micrograms (mcg) daily. To me, this is a huge psychological win by breaking the 200 mcg threshold. I wonder what it might feel like to be below 100 mcg?
Ryan appears to be tolerating the reduction… at least so far. Still, he’s not out of the woods just yet. I’ll feel a hell of a lot better when Friday afternoon rolls around.
In the comments of yesterday’s post, It’s Like a Restoration Project, a reader asked what happens with the pump when/if Ryan’s weaned entirely from the baclofen. I have the answer. Or, more accurately, I have the options:
- Immediately surgically remove the pump from his abdomen.
- Drain all baclofen from the pump reservoir and fill with saline solution. Have this saline run at a minimal rate to keep the pump working if baclofen needs re-administered.
Well, here is my plan (at least at first blush): I’ll go with option #2 for several months. Probably half-a-year or longer. If all seems fine at that time then I’ll have it removed entirely. I must proceed with extreme caution not to be too hasty. The worst thing that could happen is to have the pump removed only to need it put back in.
The next question I need answered is, at what point is it safe (and advisable) to stop the medication? I already sent an email out to the International Brain Research Foundation (IBRF) asking just this. Once I hear back from them I’ll see if their recommendation flies with the Brain Surgeon who placed the pump. I’d feel better if they collaborate.
So, what’s next in the short-term (before the end of the year)? Well, one thing that is a certainty is the pump will be refilled on December 28th. It’s not because the reservoir is low, rather it is the effective life of baclofen (six months). This is a simple procedure where they insert a syringe through Ryan’s abdomen into a port in the pump’s reservoir. They remove the old baclofen then inject new. Easy, yes, but this carries great risk if the nurse misses the port and injects baclofen directly into his body. The overdose reaction is quick and becomes a life-or-death situation. Aside from the refill, there is also the opportunity to cut the dosage.
I’ve also tentatively scheduled another reduction for December 12th. It’s crazy, but Ryan might just get two more reductions this year. I hope I’m making the right decision… for Ryan’s sake.[poll id=”59″]
- It’s Like a Restoration Project (ryansrally.org)