Hi Gloria, Thanks so much for your reply. I just spoke to the SLP over the phone today, and he was very helpful in helping break down a few mouth exercises to start with as baby steps toward swallowing. He also explained about trismus, which wasn't something we had heard of before. I think he is experiencing a version of that, and it sounds like it could get worse with time if left unaddressed. I'm finding that balance between encouraging and being pushy such a delicate one, especially as this gagging and wretching and threatened vomiting makes him feel so awful, so I'm sympathetic to the avoidance but also concerned about him losing skills or hurting himself in the long run. And also just burnt out myself from the non stop nature of navigating the medical systems and advocating for his care during these acute periods, as well as caring for our two little kids who are still in very needy stages. He started on a low dose SSRI mid treatment but that is a good idea to talk to the palliative team about--maybe he could use a higher dose. Thanks for the reminder too that he is still very early in the recovery phase...I think we are both so impatient but you are right that he is really in the infancy. The SLP said something similar--that even though he stopped treatment a month ago, he's really only just beginning to recover as the treatments stay in the body and keep working for weeks after. Thanks again for taking the time to write.
Tori