Yesterday afternoon, around two o’clock, Ryan’s baclofen dosage was decreased from 199.7mcg to 175.0mcg. I’m not noticing any negative effects. At least not yet. His night was calm (but pulse was about 15 beats per minute higher than normal). Remember, I begin to breathe a little easier on this when we get past 72 hours.
Potentially positive, Sue and I did notice Ryan was especially reflexive to his feet being touched last night. A light touch on his toes was all it took to get him to withdraw his leg. I’ll watch this to see if it continues, then add different stimuli to other places on his body.
His next reduction is tentatively scheduled for December 28th. Also at this time he will get his medicine reservoir refilled (draining out the old first). Even though there is plenty of baclofen still in the pump, the medicine has a relatively short half-life. We never let it go beyond six months without completely draining and refilling it.
It was my mission yesterday to get Ryan upright in the standing frame. I’m happy to say I was able. He spent two hours at a seventy-degree incline. It was nice to see him up again!
Further, I was aggressive with orally suctioning and even did a deep suctioning at bedtime (Oh, how I hate doing that). On top of these, we gave him nebulizer treatments every four hours to open his airways and break-up secretions. We did multiple chest percussion therapies (i.e., cupping my hands and thumping his chest) until we turned the lights out at eleven o’clock. It worked! At least overnight he coughed very little. I’ll do the same regiment again today.
John Ronay, the owner of Blue Moon Construction, is genuinely a good guy. Top-notch, really. I can tell (it can’t be faked with me), he cares about Ryan. I can see it in his face and hear it in his words.
Rather than give a quick update today, I’d like to wait until tomorrow — after the project is complete — to give the full run-down.
- Baclofen Reduction Successful, So Far (ryansrally.org) 2 weeks ago
- Baclofen Reduction Today (ryansrally.org) 1 month ago
- Baclofen Reduction Scheduled (ryansrally.org) 3 months ago