Plastic bronchitis update

So we sat in our local ER for 7 hours yesterday waiting on the helicopter. But we did run into friends as we were leaving at midnight. Not the best place for a reunion, but good to see them anyway.

We arrived at 1:30 in the morning and finally got to sleep at 3:30. Long night. Caelen had an echo today, blood draw and 2 attempts at placing an IV. The most recent ending an hour ago. Let me tell you I fought the second IV placement because it isn't not going to be used right now and is only a backup plan. And I understand that. But knowing its a weekend and no procedures would be scheduled till Monday, if any, I didn't want to waste the vein since he blows them quickly. I basically felt bullied into it because I asked to speak with my dr first. The attending said ok, but then ordered the IV anyway. They came to us the playroom and said that the team was here for us and ready to go, and our nurse already has Valium for Caelen. And I still hasn't talked to our Dr. So I felt bullied. And I told my Dr this. He said it was necessary, but he came after the fact.

This sent me into big tears. Embarrassingly sobbing tears. I hate showing weakness and today I broke down. We will continue the nebs every 4 hours, tweak some meds,but If we can't get this under control, then transplant is on the table. I am meeting with the transplant team on Monday to discuss the next steps.

There's still a possibly that we can get the plastic bronchitis under control, but transplant is likely. When will he get a break?
But, Caelen is having a good day. He'a cruising, watching movies, going on wagon rides, and flirting up a storm.

So I guess for now, here's what's happening. A lot of people come thru the room. Everyone with a different Pon.

Ok,my eyes look Horace from crying. I'm going to take a nap.
Thank you
Katye