It’s only nine days since I last decreased Ryan’s dosage. This will be his second reduction in three weeks. Aggressive, yes, but well thought out. In just a few hours he will be at (or around) 225 micrograms (mcg) per day. This is roughly a 14% reduction from his current level, which is huge. Ten percent is considered the benchmark maximum decrease in most circumstances.
Yes, it’s a risk. It always is. The next few days will be tense as I watch for signs of distress (and awareness). But there is an ever-moving equilibrium between alertness and comfort that I am hell-bent on determining for Ryan. Unless, that is, Ryan has no cognitive awareness at any level. I’d rather not think about that right now… or ever, for that matter.
The process of changing the dosage rate is completely non-invasive. A nurse (or doctor) will place a wireless sensor over the pump site that, in turn, communicates with the pump’s computer. This sensor is wired to a hand-held unit (about the size of a paperback book; see photo on left) that is used to reprogram the pump. The benefit of an internal system is that the drug does not cross the blood-brain barrier, with delivery right into the brain. If taken orally, he would need so many pills to even come close to the infusion method that it would be impractical.
It’s no more difficult to use this device than an app on any smartphone. Really, most anyone could do this themselves with a quick one-hour lesson. If it weren’t illegal to own/use one without a license, I’m sure I’d already have the unit. I suppose it’s not so much about knowing how to use the equipment as it is safely changing dosage.
This might be aiming too high, but I’ve already penciled in November 22nd for another dosage decrease. I’m shooting for another huge reduction that will take Ryan to around 200 mcg daily. Beyond this, I probably won’t do much before the holiday season. I have December 26th blocked out. Who knows, maybe Ryan will ring in 2012 at a rate of 180 or so?
- Ryan began the year at 425 mcg/day (or 17.708 mcg/hour)
- Ryan is now at 225 mcg/day (or 9.375 mcg/hour)
- So far this year, this is an absolute decrease of 200 mcg/day (or 8.333/hour)
- So far this year, this is a net decrease of 47.1%.
- Today: Baclofen Reduction Again (ryansrally.org)
- Baclofen Reduction Today (ryansrally.org)
- Baclofen Reduced. UTI Found. (ryansrally.org)
- Baclofen: So Far, So Good (ryansrally.org)
- Baclofen Reduction Scheduled (ryansrally.org)
- Update: Baclofen, YGR!, UTI, Rash, Store, Sleep Study (ryansrally.org)