PICU boy

What a week. After Antonio's first trach change we spent the weekend getting him up in his little chair, holding him, and trying to do some tummy time. He was still very sedated, so he slept through most of it, but it was good for him and fun for us! We even saw Santa on Tuesday!

He was having some issues with breathing hard when he would wake up, so we tweaked his vent settings back up. They had made some adjustments last Thursday and Friday because he was doing too good on his blood gasses, probably because he was super sedated. So all week they worked on weaning him down and messing with the vent. Tuesday morning we heard from a pulmonologist that she suspected that we would move to PICU within 24-48 hours. Everyone else said no beds were available. Wednesday we heard we were moving, then nevermind we aren't, then wait yes you are, and finally about 6pm they said we weren't. So we had packed everything up, only to have to dig some of it out to take care of him yesterday. Yesterday morning we heard there were absolutely no beds, there was virtually no way we would transfer that day. This was good, and it was good that we didn't transfer Wednesday night, even though I was very annoyed for the back forth, because he had an extremely busy day planned for yesterday. Bronchoscopy at the bedside to look at his airway while he was awake to see if he had any floppiness that would require more pressure support on the vent (this did show some so we went up on the pressure support, but no tracheal floppiness which was good), his laser procedure that was inevitable for his ROP in his eyes (went very well but it was an hour of them prying his little eyes open! He should just need weekly eye exams for 6 more weeks and then be done!), a hearing test (was inconclusive because his ears still have fluid on them probably just from being intubated and having to lay still so much), and a routine echocardiogram to check his PDA. They also ended up doing a blood gas and chest xray in the afternoon to check on the vent changes that we made in the morning. For the echo we asked them to come back, there was just no way to fit it in. Fredy and I also had a trach class, which was where we were at at 5pm when we got the call that they had a bed available all of a sudden. I was a mess, the whiplash really got to me and it seemed so unfair to him and us to make us move after such a huge day. The worst part is that he had to change to a different ventilator. For some reason (which no one can give me a clear answer on) they have a different ventilator in the PICU than they do in the NICU. Even our attending physician is annoyed with this. The babies hate the transfer, the vent gives breaths differently and so they ALWAYS have a terrible time. I knew this, and I knew that shift change going into night shift after a day packed full of procedures was not a safe idea. Can you imagine if we would've transferred the night before and THEN done all of that to him!?

He proved me right, he had the worst few hours that I've seen him have in a very long time. He was completely inconsolable from the time we got there at 6:30 until almost 1am when he finally slept and we decided to get some sleep. They basically had to go back up on his sedation quite a bit, we had been weaning it down since his trach change to let him be more awake, but he was breathing SO hard and just looked like he was suffocating and was "crying" non stop. He hardly every cries (except when he's constipated). We actually have heard a few peeps come out of his mouth this week, for the first time ever. I'm hoping he can give us some little noises over time! But it was awful watching him. And they were acting like they weren't completely sure if it was the ventilator that was upsetting him, although he was clearly completely fine before we switched him over. I got them to hold off on doing a trach change (taking his trach out and putting a new one in) at midnight because when he would give in to the sedation he would breathe totally fine, meaning nothing was wrong with the trach. That was good because he quickly settled down after that conversation and slept the rest of the night. Fredy and I got to change his trach out today (the scheduled weekly change) instead which was great because we need all the practice we can get. The staff was really nice about it all, but it was a struggle to not lose it after being up since 6am and going through all we went through that day only to watch him suffer for more than 6 hours. Plus the room was a mess with all of our stuff everywhere and we couldn't hardly leave his bedside because he would just get worse.

Thankfully today has been better. He's still struggling when he's awake, but not near as bad and doesn't seem to be suffering as much. They've been able to give less boluses of sedation and he's been comfortable. Somehow his blood gases have looked great. And his oxygen requirement went up overnight but we were able to wean back down to 30% today. The providers say that they are impressed with how well he's handling it. I would hate to see how the other babies handle it. It definitely feels like a step back and we are terrified of what happens when we start to wean his sedation back down. They all act like it will work out and all the babies go through a rough couple of weeks, then can usually transition to the home ventilator, then start thriving. I really really really hope they are right about him following that course. I have a hard time believing it, but I only have Antonio to look at and they have seen a lot of babies as bad or worse off than him make it out.

We are worn out, but thankful to have this last transition over with. It was looming over us and there were so many tears once again saying goodbye to the nurses and providers we had gotten really close with. That's two times now that we've had to rip ourselves away from a group that we had grown to trust and enjoy spending our days with. I really hope we find that group quicker over here, and at least when we leave it won't be sad. The reason we had to come here was because they have a whole part of the unit dedicated to home vent kids. We were told that the nurses and RTs that work in this area almost always work in only this area. I didn't believe that, and it's not true. It used to be that way. We were also told that the nurses all at least have a year or 2 of experience before working over here. I'm not sure if that is true, but our nurse last night just got to this unit in July and the one today has a year and half. Thankfully everyone has been super nice and willing to help us anyway they can to make the transition easier, that's usually the most important part anyway-caring. Once he's on the home ventilator, the home vent team providers will take over managing his care. They will wean that vent and get us on the road home. Until then the PICU team providers manage him. It's just a lot of people to fill in, but at least he's more stable this time.

It's a bummer we'll be spending Christmas on a new unit without familiar faces, and I don't think I have it in me to hang up all of his decorations again before Monday, but we at least have our little tree. Hoping and praying that next Christmas looks MUCH different. We're thankful to be where we are though, some of the parents we met in the NICU would love to be spending Christmas with their baby, even in the PICU. Trying to remain thankful and optimistic.

Thank you all again for your prayers and generosity- we can't say it enough! We hope you all have a Merry Christmas (: