It took a boatload lot of time on the phone yesterday morning, but the baclofen reduction happened! Ryan was reduced to 30 mcg around three o’clock in the afternoon, taking him to the final level before stopping the medication entirely. I already set this up too. We are schedule to do this on Monday, April 30th, provided Ryan tolerates the reduction. In just two weeks!
What will happen on the 30th is all the baclofen will be pulled from his pump reservoir via a syringe. It will be flushed twice then filled with saline. The pump will deliver this at a minimal rate — I think 25 mcg — for the sole purpose of keeping it from seizing from non-use. This way if we needed to reintroduce the baclofen then we are confident that the pump is working. I have no expectation that this will be necessary, but best to err on the side of caution.
The plan is to keep the pump in place for three to six months before having it surgically removed for good.
Like every other decrease, I’m a nervous wreck. The good news is Ryan had a comfortable night and is doing well with therapy this morning, so I’m feeling a tad bit better. The first twenty-four hours are the most tense, but it takes a full seventy-two hours until I know for sure.
Nursing Situation Update
We still are faced with open shifts. In fact, there’s another one tonight. Perhaps the best way to describe this impact is to quantify it and let you decide. So here are the facts:
- Month-to-date, 23.5% of nursing shifts went uncovered. This is 48 hours.
- As of yesterday, there was no progress in back-filling for the nurse who walked off the job.
- If the situation continues, the month of April is projected to lack coverage one out-of-every three shifts (33.3%). This is 120 hours.
- I missed two benefit events this month for Ryan resulting from non-coverage.
I asked the Regional Director to provide more overtime hours, if a nurse could not be found. So I am hoping to hear back today if this was requested (and was hopefully granted) as an exception from the corporate office. It might only give a few extra shifts a month, but I’ll take what I can get at this point.
I was excited to do a radio interview this morning with WAJR (Morgantown). I just got off the phone with them and I hope it went well. I’ll see what I can do about getting a file of the broadcast uploaded to the website.