3. How far he’s come since October 2011
Robert’s doing very well insofar as he’s got quite a bit of congestion on his chest– common in someone who’s immobile. He’s got a tracheostomy so couldn’t talk even if he had control of those muscles, which apparently he doesn’t. He’s being tube fed and he’s on anti-seizure medication and neuropathic muscle relaxants as well as some gastro meds to prevent ulcers. He has had a urinary tract infection and several other scares but has worked them out. His temperature peaks at times and gives us all a fright but we just have to deal with each day as it comes.
There’s no doubt he has become more aware since January, for instance. The five days he was off medication was a revelation – he was far more aware, alert and responsive; moving his head towards people who mentioned his name, my name, turning to people who talked to him, and generally more awake. Unfortunately the nursing staff believed he was at risk from a seizure (his temperature will go up and because of his neurological condition his body can’t regulate it and heats up) and he went back on (slightly reduced) medication before the neurological team at the hospital could see him and evaluate his awareness.
We noticed it though.