Just before noon yesterday, Ryan had his baclofen incrementally reduced for the last time this year. Baclofen is a skeletal muscle relaxer that, in Ryan’s case, is delivered via an internally placed pump. I’m still amazed he began the year at 425 mcg daily (17.7 mcg/hr) and now is at 155 mcg daily (6.5 mcg/hr). A 63.5% reduction! Crazy good! If all goes well this time, we’ll have the opportunity to cut it again on January 12th. I suspect I’ll shoot for 135 or 140 mcg.
He appears to be tolerating this latest reduction well. There were no obvious negative signs neither yesterday afternoon nor overnight. In fact, he seems quite comfortable early this morning. I’ll be interested to see how he responds to his stretching and standing.
Baclofen tends to deteriorate over time once in the pump’s reservoir. For this very reason, we have Ryan’s completely drained and replaced every six months. This happened yesterday. Although it is a routine procedure, doing it incorrectly carries high risk. Namely, overdosing. There are several ways, during the refill process, to make sure this isn’t happening and I watch them closely. But, like everything, nothing is certain.
If the syringe needle misses the port to the reservoir and is injected directly into the abdomen the results are often swift and deadly. We are past the point when this would happen… thank goodness. I wish I could say I didn’t lose sleep over monitoring him throughout the night for any negative signs.
It’s my intention to stay aggressive with future reductions. That is, until the point where Ryan is showing discomfort or he is completely weaned. Weaning is such a slow process! A realistic goal is to have Ryan below 100 mcg by this time next year (a 35% reduction). The ultimate goal is zero.
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