He's out

Micah's out and he's doing fine. He's been pretty unhappy, but he's asleep now.

Dr. E went first in surgery. They were planning a scope and trimming his epiglottis. They got in and found out that the mass had expanded a lot and was displacing his upper airway. (The rapid expansion of the mass is likely because of the cold he had a few weeks ago.. and this is how it may always be.) The malformation distorted the upper airway anatomy and they decided it wasn't a good time to work on his epiglottis. That part went pretty quickly. Unfortunately the mass expanded a LOT and is really affecting the floor of his mouth now. It's pushing his tongue up. All along we were hoping he was just learning how to use his tongue and that's why it seemed to be moving more. He came out and told us what was happening while Dr. P got started. Dr. P was unable to do any sclerotherapy in the area of his temple and behind his ear. The tissue is too dense... the first time we've heard that. He was able to drain and inject some areas under his chin, which is the most important place. He is hoping for significant results, including the floor of his mouth. They also told us the area of his esophagus responded very well to the sclero last time, they didn't need to do any more work. They did as much as they could, and are going to try steroids to see if that'll reduce the swelling and help his airway get closer to normal. Eventually the plan is to get his tonsils out, just because they're in the way.
Unfortunately, with sclero not working in about 2/3 of his mass, surgery is our only option. The original hope was to wait to age 2, but now the plan is 1 1/2 because it might not be able to wait. Dr. E said it'll likely be a 6-7 hour major surgery. Ugh. They want his nerves to develop as much as possible before going ahead with surgery.
Of course, I (Brittany) am bummed. It's mostly not good news... as Dr. E put it, this is a really hard problem to treat. He's still hopeful to be trach free by age 5-6. I made Dr. E sad, because he's not used to me getting that frustrated. We'll just keep plugging away... They want us back for a clinic visit in a month, and to return for more sclero in a 'few' months.
Even though they didn't do much, we're staying in the night and will most likely get discharged in the AM.
Thanks for your prayers.