Yeah, like I said. Something is definetly brewing and I am pretty sure it is another pseudomas pneumonia (a bacteria that lives in his lungs and becomes symptomatic often). He is quite junky today but managing his secretions. He has been needing O2 at night and increased suctioning. Man I wish I could just call someone to give me a damn script b/c I have been right every time about this so I can avoid the hospital. We are at such a frustrating point right now with the drs. b/c NOBODY wants to "own" Avery. They just keep passing the buck. Even the Complex Care team has basically thrown their hands up saying since he is on BIPAP he ends up on ICP (stepdown ICU) so they don't really see him. Which is complete bull****

We actually have an appt. with the Complex Care team aka CCS on thurs. so we can iron out these things but in all honesty, nothing is going to change. Because when you call an on-call dr. with a kid like Avery, they just send you to the ER anyway. I am trying to keep him OUT of the hospital to avoid all of those horrible germs and we manage him well at home and know when to bring him in. KWIM? Just one of my many frustrations. So I know the progression of things and if/and when Avery gets a fever then he will get really ill and will go in at that point. Hopefully we can avoid that but I highly doubt it.

So in preparation, I have done most of my hearing aids for the end of the month crunch LOL, in case we go to the hospital. I will keep you all posted.