Ever since we switched back to our name brand seizure drug - Brextin has been doing wonderful. He hasn't thrown up since Saturday night - He is however waking up often in the middle of the night just crying - we think he may have gas so we open up his feeding tube and a gush of air comes out - however he continues to cry - since he can not talk - we have no idea as to why he is crying - we try to console him and then head back to bed - often he does finally fall asleep.
I am still waiting for Mayo to return my call - Brextin is suppose to have an EEG scheduled to check for seizure patterns and some blood tests - however it has been a week - since Mayo has returned my call - I did call today - but they of course said they would call me back once they could figure out appointment dates.
We have been struggling for feeding tubes - since we only get two provided to us threw Medicare insurance a month (since my work insurance won't cover them since they are not considered to be durable medical equipment) - but luckily I was able to find our needed feeding tubes via ebay - and will be receiving some shortly.
If you check the comments - someone stopped by Brextin's blog and shared with me a helpful site called Oley Foundation - I noticed there is a link for medical supply exchanges http://www.oley.org/equipexchange.html so I might follow up and inquire on the site - they also provide support groups with similar situations.