HME Trials, Airway Eval, Granulation tissue be gone!

He hates the HME!

Sweaty head!

After surgery!

 Joey had 3 procedures done yesterday that did require him to go under anesthesia. He had an airway evaluation on the upper portion of his airway to see if the trach was still an appropriate fit, ear tubes to help with drainage in his ears, and then they surgically removed the granulation tissue in his stoma.

He actually did well during the procedure, antd he is still recovering from the pain. His ears are still draining fluid, in which there should be cause for concern if the draining is still occurring after a week. 

He has been requiring more oxygen this week. We have done a few things like we stopped his phenobarb and his gabapentin. He had these crazy instances of what I call sweaty head syndrome and agitation which is textbook case of withdrawals.  We ended up actually restarting the gabapenting at .5 two times a day to see if it would help. I can't quite tell if this has helped since he had a surgery yesterday, and obviously he is experiencing pain from his recovery.  I think we will have to see how this all plays out over the next couple of days.  I'm paranoid that the sweaty head may be leading to heart failure, but no one seems to think this is the issue. I hope that I'm just speaking purely from paranoia.

The next challenge ahead is getting him to tolerate an HME so we can travel in the car.  The second time we put him on an HME and his stroller, he was screaming bloody murder (if he could be heard). I was a little discouraged at how poorly he tolerated the HME. They say though that the HME is like exercise-it's a new way to breathe, you have to work a little harder at it, and you have to build up the tolerance over time.  We have 4 days to get it figured out. Today I'm giving him a pass since it's a day after surgery and he seems to be more agitated than usual. I think today was better than yesterday's agitation though.

Daniel and I have been working on getting Joey's room ready for home, and I think we've got a pretty decent set up. Much thought and love has been put into creating his space for home.