Jonah is in the hospital again. We decided last night to take him to the ER after he had an episode where he was gagging a lot and mucus was coming out his nose along with milk. That was kind of the final straw for us. He's breathing fine now, but they are going to keep us overnight, and the ENT will see him tomorrow. We'll probably push for scoping him, but I don't really know the "safe" EB way of doing things. There's an upper airway scope that they could do in the clinic, and there's a "rigid" scope that he would go to the OR for. I don't really know the difference and won't until tomorrow when we talk to the ENT. I don't know if they'll be able to talk to Dr. Elluru in Cincinnati or not before whatever procedure they decide on. It makes me nervous, but I don't really know what else to do.
I'd welcome any advice/knowledge on the whole scoping thing, especially since they may not be able to talk with the EB experts.
Anyway, I'll try to post an update once we know more, but just wanted everyone to know we're back in the hospital - this time in a private room on the pediatric floor.
Thanks for your continued prayers. Like I said before, it's all pretty overwhelming and lots of new really important things to learn... I definitely feel like I'm behind the curve. Please pray for wisdom for us as well as the doctors as they/we make decisions about where to go from here.
Oh yeah, the Easter Bunny came and brought Jonah a little basket with a duck and a rattle. It was really sweet, but Jonah slept through the whole thing, and I DIDN'T HAVE MY CAMERA!!! Dang it.