Hi again... so not much change in status today. He can still move his shoulders, neck, head. We continue to struggle with pain. Not only is he achy laying in bed, but he has tingling pain and numbness because his nerves are exposed and sending strange signals. The other constant issue is temperature control. Because of the strange signals, his body can't regulate it. Though he is not running a fever, he feels hot and sweats. We keep his room at about 50 degrees, and keep ice packs and cool wash cloths on him.
He finished the initial IVIG treatment. There is no way to know if it did anything. It may have slowed the progress, but maybe not. Yesterday he started plasma-farisis (sp? where is a nurse when I need one!) where they pump his blood out of him, clean it out, mix clean plasma into it and pump it back in. He has dialysis ports (caths) in his neck that they use for the process. The theory is if we clean out the bad, the faster the recovery. But again, "theory". This may not change anything. So we wait.
We have a dry erase board we use for communication so he can use blinks when I point to the letter. It takes a while, but I am getting better at reading his lips. Sometimes though, he is so well medicated that he mumbles. When his lips don't move it's hard to read them. He had a swallow evaluation today, but his muscles are not strong enough yet to swallow. He will continue to be fed through a tube in his nose for another day or two then, if he still can't swallow, they will put a feeding tube into his stomach.
I thought I would be able to write from the hospital, but it is blocked. I will get to this when I can. Thanks again for all the calls, visits, texts and support! It is welcome and needed! Lu