progress?
This was another week of waiting for us and Antonio, but with more positive than negative. We ended up starting his steroids on Tuesday, and by Wednesday afternoon I started noticing slight improvements in his respiratory status. Monday he had sort of declined so we started out on 70% prior to the steroids and he was hitting his pressure limits on his vent. Wednesday we stayed in the 60s, we went back to 70% Wednesday night, but then got down to 55% briefly Thursday. We got down to 51% yesterday, started out today on 60%, now we're on 56%. He needs higher oxygen at night still, but not near as extreme as before. But if we could keep inching down in that sort of pattern that would be great, I know not to expect anything too quickly. They were expecting him to maybe not even notice the steroids until Tuesday next week, so I'm happy with his progress. The downside is that he is also very angry again because of the steroids, so we've had to increase sedation, which is making him more constipated. Also, he stopped responding to the lasix last weekend so we had to take a break and he got really swollen again. We're back on that and he seems to be responding. And his the pressure numbers on his vent have been trending down, which is nice to see. He still has many many moments where I think he's going to start going downhill, but if you look at the past week as a trend, we're doing better overall.
I also talked with a charge nurse about more consistency with our nurses. One day this week we didn't get our primary, who hadn't been here for over a week anyway, but I understood because she needed to take care of a really sick baby. So we had a nurse we'd never had before, but we ended up loving her. So we were supposed to have her back Wednesday, but she got an entire different assignment right next to us, leaving us with yet another nurse who we've never had before. There wasn't much explanation as to why that happened, and they understood my frustration. It's really upsetting. We can't know much about how our days will go, but if we can rest in the fact that we have someone we know, that at least means that we know we don't have to try to explain all of his little quirks. It gets really exhausting explaining what all we like to do with him, what his habits are, even why he's on the settings or meds he's on, almost every day. It's impossible for them to know his entire history, so I don't expect them to. But that means that if I'm not here constantly, they'd be left to guess on a lot of it. So in the end a few of the charge nurses that we've had take care of him in the past have signed up to have him when they aren't charge, and we have a pretty good list of people going on night shift so hopefully that will help. He really needs consistent care, this next month is crucial.
With all of the water weight I think we got as high as 7lb 12oz. Last night he was 7lb 6oz. I think we're probably around 7lb now truly. I definitely can't fit him in my tank top when I hold him these days! Speaking of holding, he tolerated being held wonderfully this entire week. It may be because of his extra sedation, but even when he has been really sedated in the past he always seemed to have issues while I held him. It's been so nice, I get to read books to him and listen to music for the whole 3 hours instead of him constantly alarming and struggling to breathe.
I'm cautiously optimistic, we've had times in the past where I thought we were on the right track only to fall further than we ever started. But, I'm slightly more hopeful this time, as he gets to stay on these steroids much longer. Prednisolone is not like the dexamethasone course of 10 days, he can be on it much longer. It also starts out at a dose and stays there instead of weaning down after a couple of days. We have to stay very patient though, he will still have good days and bad days, and they expect his progress to be very very slow.
Thankfully he charms us every day with his adorable little face, keeps us coming back for more of his antics. This week the NICU got Halloween costumes donated from Build-A-Bear. They actually had the little soccer outfit I was thinking about getting him before I decided to make him a referee costume, so he gets 2 costumes, maybe 3, we'll see!
Praying for continued improvement in his lungs and for him to be comfortable while we all wait for the day he gets rid of the dreaded vent.
-Here you can see his annoying PICC line that continues to give us issues all day, we're hoping they'll rewire it Monday
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