Monday

We're home, and Luke just fell asleep. I don't want to jinx anything, but he was just breathing through his nose and mouth (not the Trach) while asleep. We're making ourselves wait till tomorrow to try and get him to sleep while actually capped, but my hope level just shot up about 50 points. Maybe we really can do it this time.
****************************************************
Just talked to Dr. McClay. He started out his report with "I'm very excited...". He showed us pictures of the airway before and after he cut out the floppiness that we think has been the trouble all along. McClay is very optimistic that Luke should be able to be capped "100%" better now. We're talking about scheduling a sleep study and hopeful decanulation as soon as we're out of RSV season. This news is surprising and exciting. Another positive is that McClay doesn't think we'll have to stay overnight. Should be able to go home on Tylenol. Yay!
****************************************************
Just got an update from the ENT, still in the OR. Looks like we're still dealing with floppies in the airway. McClay is going to do some cutting to make it easier to breathe with the cap. Probably looking at an overnight stay.
****************************************************
The audiologist just came back to report her findings on the auditory brainstorm response (ABR) test. Luke's hearing is just fine. We weren't worried, but it's nice to know for sure. ENT is doing the scope now. It shouldn't take long before we talk to the doctor and then go back and see Luke.
****************************************************
They just took Luke back to the OR. The plan was for his Pulmonologist to be in the OR with the ENT for the procedure, but ENT didn't seem to know that when we just spoke with him. Disappointed that we probably won't have another set of eyes and brains in the OR like we hoped. Luke should be done in a few hours.