We're home, but we left on a bad note, like we always do. We never had a care conference. They couldn't get everyone together. ENT was in surgery all day. We talked to people seperately, and ENT was supposed to come down after his day. Of course he never showed up.
They talked to his resident, who said the Dr. had left, and that he would come up. Well I didn't want to talk to him, he means nothing to me. So I went in the bathroom to pick up my stuff because I knew we would be going home, and the resident walked in and yelled HELLO. And then came over and knocked on the bathroom door! Can you believe that? What if I was on the toilet? He was going to sit there and pound on the door the whole time?
You know we've been wanting to move to California since we first got married. He's from there and has never felt at home here, and I've lived here my whole life and ready for a change of scenery and no snow. But now its become moving to get our child some decent health care. Our childrens hospital was number 1 in 1996, and in the last few years its fallen off the charts. We are not even in the top 25 anymore. That tells you something.
Anyway, I called my pediatrician and she said just to go home, and we would talk to ENT by phone. I believe we are going to go ahead with the trach. Everyone is in agreement that thats what he needs. I talked to his pulmo doc yesterday and she agreed. She said she hates trachs but there is no other option. Even if we could take his tonsils and adnoids out it wouldn't help the airway and the tongue problem. The trach lady came down and talked to us and eased all of my fears. She reminded me that he will always have an upper airway. He's not one of those kids that their face was totally smashed and the trach is their only airway. If his trach was to come out he could still breath so it wouldn't be an emergency. He can also still swim, you just cap off the trach. Plus she said it wouldn't be much more work than he already is. You pack up your g-tube stuff, your oxygen stuff, and now your trach stuff. Simply as that. The only thing that breaks my heart is losing his voice. I know I will get used to it and as time goes on he will learn to make noise around it, but I know I'm going to totally break down the first time he cries and I hear nothing.
So today will just be waiting for ENT to call, and find out when the surgery will take place. Here's some pics from our stay.
Just out of the cath lab.
That night extubated to bi pap.
The next morning off bi pap waiting to go back up to the floor.
Back to the floor, trying his hardest to get his hand out of that blankie to get at his face.