After my last post, Dear Son continued choking on his secretions. I tried 2/3s of the Scopolamine patch and then had to put the whole patch back on so he wouldn't choke or aspirate. Once I put the whole patch back on, Dear Son hasn't cried out from choking. The only time he cries a lot is when he sits up in the recliner or wheelchair. We are not sure why. Lying down, he simply sleeps and cries out when he needs to be turned over. He is sleeping however most of the day and night but does need to be turned over quite a bit so I am still not getting a heck of a lot of sleep.
I spoke with Ped Neuro Doc on Monday and we are going to switch from the patch to a Scopolamine gel that will be made by a compound pharmacy. It takes a few days to make so it should be ready by tomorrow or Thursday. The gel can be rubbed on Dear Son before bed and will last from 8-10 hours; if he needs another dose, I can do that again. This will give him the benefit of the Scopolamine drug in drying up his secretions but also prevent urinary retention since it's only on part of the day.
If that works, then the only issue remaining is to figure out why he cries when he sits up in a chair. At the hospital, he was lying in bed the entire time because they don't have a hoyer lift or any way to lift him out of bed into his wheelchair. I am not supposed to do that anymore since I had back surgery so I don't risk it.
Once we get the gel, we'll see how things go. I imagine at this point, Dear Son just needs to sleep and get well after these last few weeks. Dad has him today and tomorrow, so I can work. It will feel great to get a good night's sleep.