Trach Plans Changed

Major change in plans - Ben has had some testing done recently to find out why his airway was inflamed (they found inflammation when he had surgery back in September). We found out one answer and that answer brought some disappointing news. Ben is aspirating his own saliva. This is related to his facial palsy, uncoordinated swallow (which is why he can't eat orally) and abnormalities related with his cranial nerves (common with CHARGE). Although the ENT doc wasn't surprised, he was disappointed with this news. To fix this, four of his saliva ducts will need to be snipped. There is a 25% chance that these ducts can fuse themselves back together at a later time, but it is pretty much our only option. Surgery date for that is scheduled for March 15. And because of this finding, the doc does not feel comfortable doing any kind of airway reconstruction any time soon (definitely not in 2007). He feels that opening up his airway could cause more risk of aspiration (the narrowing and damage may be stopping saliva from traveling down to his lungs and helping him stay healthy). We were very disappointed with the news, but we understand and want Ben to be safe when it comes time to take his trach out and now just isn’t the time for him. Hopefully after the saliva surgery, he won't need suctioned as much - so that's the good news.This also changes things with his urinary track surgery. We don't have to rush since his trach won't be coming out this year... so we may either go for the injection or wait to have the surgery until later in the year. I have a conference call with the doc on Wednesday to discuss.