Ryan had one of his roughest nights in some time. He was uncomfortable and, again, I’m not sure why. His pulse was about twenty beats per minute higher than normal. He was squirming. He was coughing and raspy. His temperature went down — albeit not nearly as low as the previous night — to 96.2℉. I am quite worried he is trying to fight off a respiratory infection. I really don’t want him spending another holiday season in the ICU.
In a direct way, I blame the blisters on his toes for all this (including the urinary tract infection). It has prevented him from receiving his full spectrum of therapy. Most notably, it stopped him from getting in the standing frame. Being upright does wonders for the respiratory, circulatory, urinary, and bowel systems. For the body, everything just seems to work better when one’s upright. At the risk of reopening a blister, I decided to reintroduce this therapy today.
The first thing going down today, beginning early this morning, is the kitchenette project begins with electrical and plumbing rough-in.
If you look at the photo (right), the granite counter top will be exactly where the table is now, except it will include a full kitchen sink. Below the counter top will be a dishwasher and cabinetry. I asked for a garbage disposer to be included, but I’m not sure it will happen. If not, I’ll install one immediately. I’m also hoping they might replace the over-the-counter cabinets to match the base cabinets.
As for the concrete project (patio, ramp, walkway), I’m in a bit of limbo here. Last week we left it that the contractor would contact me today and, perhaps, outline the layout on the lawn. I completely understand if this doesn’t happen according to plan since the owner is dealing with a family members illness that takes him away from his job. My only hope is this is done before the first significant snowfall.
Finally, Ryan’s baclofen will be reduced this afternoon. It’s a huge gamble, given his recent discomfort. Anyhow, this will be a 12.4% incremental decrease to 175mcg per day. Amazingly, since the beginning of the year, he will be roughly 59% lower than when he started (425mcg). If Ryan copes with this reduction then he’ll get another at the end of December, taking him somewhere around 150 – 155mcg. So far, at least, this aggressive approach has worked.
I don’t want to get my hopes up, but I must begin planning for the possibility of weaning him off baclofen completely. This could conceivably happen as early as next year. The target dosage to do this is around 40 -50mcg. My plan — if we get to this point — is to keep the pump implanted and run a “maintenance level” of saline through it for six months. If all goes well then we’ll have the pump removed. Granted, we are probably a year or more away from this, but I never expected him this low at this time last year.