Since Ryan’s eye surgery (called a partial-tarsorrhaphy) on Tuesday morning, I’ve slowly increased the duration and intensity of his physical therapies. I gave him Tuesday off entirely. In fact, when he returned from the hospital he spent four hours resting in his bed before I sat him up in his wheelchair.
My goal was to get him to full-tilt today. So far, so good. He has already done a complete session on the ActivCycle; a passive peddling exerciser (donated from Ryan’s Wish List). Now he is actively using the RT-300 FES and is doing wonderfully. From there I’ll take him to the exercise table for a head-to-toe full-range of motion stretch. I’ll wrap it up with at least an hour in the standing frame. Well, I guess it never really ends. Later I’ll stretch him in his wheelchair. This is where I spend extra time on his fingers and toes. And let’s not forget about his percussion therapies and head-control exercises, to name just a few. Yes, it never ends.
He’ll also get a complete shower tonight. Since his operation, we’ve not used the hand-held shower sprayer to wash his hair. We cleaned his hair with a product that is a no-rinse shampoo (first developed for the NASA moon missions, as I understand). It’s a foamy mixture that we work through his hair. It’s followed by a dampened washcloth to remove (most of) the solution. Finally, a dry towel finishes it off. All-in-all, it’s does a good enough job, but it never replaces a thorough rinsing.
With this eye surgery (hopefully) behind him — excluding follow-up appointments, that is — our focus is shifting to his baclofen pump. He stopped needing the drug and, ergo, the pump in late-April. At the time, we set a timeline of three-to-six months for it’s removal. To maintain the baclofen pump, a minimal amount of saline solution is delivered hourly. Anyhow, the idea was to not rush in getting it out… just in case. Likewise, there’s no sense leaving it in his body if not needed since it’s not causing any problems at the present.
Specifically, we are lining-up having it surgically removed from his abdomen. We found a top-notch surgeon with Children’s Hospital (Washington, D.C.) that agreed to perform the removal operation, pending clearance of all the pre-operative conditions. Sue will meet with him the week after next to put a bow on that. My guess is that by the end of September it will be in him no more.
It’s one more step in putting our son back together.
After it comes out, the only things left in his body are a titanium femur rod, titanium skull plate, and a shunt (to drain excess cerebral fluid from his brain). Sadly, these will never come out.