So I realize there is a big giant gap between this and the last post. I can try to fill it in. Back in December 2018, we had weaned off the vent completely. We spent our first Christmas out of 5 at HOME finally!!!
Around New Years O2 requirements started creeping up and he just wasn't feeling well. We took him in to the emergency room and they admitted him. Turns out he had RSV and was on day 5. He was in the hospital for about a week. We are back on the vent overnight and up on O2 still but hopefully we get back to where were were soon.