Whats new on the Jaxson front

Jaxson is doing good. They extubated him last night to bi pap. They took him off the bi pap this morning and his been fine. We came back up to the floor today, and we'll stay here until a care conference Monday, and probably a trach next week. The care conference is about whether or not to trach him, but ENT is already saying thats what needs to be done. So I'm pretty sure thats where we are headed.
We continue to have problems with our cardiologists like we always do. They didn't do what I thought they were going to in the cath. I thought he was going to measure his pressures and start some meds. But when I asked him what his pressures were he said that when he measured them they were lower because they had already started nitric. So we didn't even get a number on his pressures are going in. My cardiologist is now saying he thinks the swelling in his face is because he is on the ketogenic diet, which is an all fat diet.

Again, OMG

He is just pulling things out of his a$# to try to explain things. You would not believe how frustrating this place is to me. The only reason I still come here is because its all we have here. The only pediatric cardiologists in the whole state. We are now looking into doctors in California, since we want to be there anyway.
I mean, he's been on this diet for two years, the swelling came on in a matter of days, and only in his face and chest. His legs are as skinny as they were before. Plus its not like just eating junk food all day, it puts your body into ketosis, so you burn fat instead of sugar. Its not a fattening diet.
Anyway, I didn't see ENT today. But I guess he talked to the cardiologist and still thinks the trach is the best thing. I really hope this care conference is productive. I hate when I have to get pissy with people.
Daddy and brothers went to the buddy walk today. He couldn't believe how many people asked about Jax. People that he didn't even know, how crazy. I will post pics when I can.