Things have improved with the Scopolamine patch back on. While I can still hear the secretions, it is slightly better. Also, I made two changes that seem to help. He had been moaning in his sleep each night and while I tried to turn him over to make him more comfortable, it didn't seem to help. I am assuming the moaning was from pain since he never did it prior to this pain issue. Usually he would start moaning around 9 p.m. or so and when he did that, I gave him .5ml of Risperdal and it seemed to help and then another .5 ml around midnight, when I gave his other seizure medications. (Ped Neuro Doc had given me the o.k. to use this.) That small change means he's more comfortable and not moaning as much; it also means he's sleeping a lot better. Now, he only wakes me up to be rolled over or changed. I also increased his feeding slightly. Prior to the swine flu, he was on 4.5 cans of formula a day. After that, we decreased the formula to 4 cans so he wouldn't aspirate. It stayed like that but then Dear Son kept waking up earlier and earlier for me to get his food started. When he was consistently waking up from 3:30 - 5 a.m. I decided to increase it to 5 cans a day (which is 1250 calories vs. 1000 calories which is 4 cans). Now he sleeps later and is waking up around 6 a.m. I always know when he wakes up and is hungry because I'll try turning him over and seeing if he's wet when he's fussing then start his food if those don't work. Once I do that, he always quiets down and goes back to sleep so I know he was hungry.
Anyway, I am on day 3 or so of the new plan and he's sleeping better and so am I. It is always amazing how much better I feel and how much more I can get done when I have had almost a full night's sleep. Dear Son is waking up and seems happier. The smiles are few and far between yet, but he definitely seems better with the new regime.
I am anxious to see what the CT scan will show. Dear Son still is not able to sit up in the recliner but I do try to sit him up every day. Typically, he'll sit in there for a bit until he feels pain and starts to cry. Then I move him back to his bed. I have to try to sit him up every day though to help keep his lungs clear. Once they figure out what's causing his pain from sitting, we'll probably be able to dump the Risperdal.