Today is both scary and exciting for the same reason. It is the day that Ryan is completely weaned from baclofen; a drug used as a skeletal muscle relaxer and an anti-spasticity agent. For Ryan, the baclofen was delivered in the most efficient way possible, via the spinal column. This delivery doesn’t cross the blood-brain barrier where effectiveness is compromised. The major drawback (aside from a catastrophic pump failure) is it makes a person lethargic.
Last June I decided it was worth the risk to begin bringing Ryan down on the dosage. The goal at the time was to find the equilibrium that kept him relaxed, but gave him the best shot at alertness. I never expected it to progress so quickly. I put my own fear aside and remained aggressive with the reductions. Hell, at that time it was not even my goal to end the treatment (although it was always in the back of my mind). It was simply to get him as low as he could comfortably tolerate.
Here we are, just ten months later and he methodically stepped-down from 400 mcg to 0 mcg later today. To say we pushed the envelope would be an understatement. We pushed, pulled, yanked, and crumpled it. Each time this happened was stressful over the ensuing three days. When I quantify it by adding all those days together it comes to just under two months (or 20% of the time) of anxiously waiting and watching to see if all fuddruckin’ hell would break loose. I hope, oh how I hope, this will be the last time.
Here’s how it will go down today. The abdomen will be completely sterilized. Then a syringe will be inserted into the pump and the baclofen will be withdrawn from the reservoir. This is followed by flushing it twice with two syringes of saline solution. The reservoir is then filled with saline and the pump is programmed to run at its minimum “maintenance” rate (just to keep it from seizing up). Done!