steady

The past week was pretty uneventful, which is fine. We really just wanted him to stay stable and grow and rest.

A nurse practitioner attempted to fix his PICC line on Monday, but didn't have any success. The problem seemed to be that Interventional Radiology sutured it in place crooked, creating a 90 degree angle in the line. So he still has to get stuck on his heels for his labs and it alarms multiple times a day because it has some kind of kink in it still. We may go back to Interventional Radiology tomorrow since it's time for a dressing change anyway so that they can try to actually rewire it. I don't have super high hopes that they'll be able to make it draw blood and run without issue, but it's worth a shot since we have to take the dressing off anyway. 

The morphine drip seems to have helped and he's getting scheduled anxiety medicine to keep him breathing slow and steady. It's probably the most comfortable week he's had, although the medications scare me. And the morphine is causing constipation again. But, I was able to hold him every day this week, which that was not the case at all the past 2 weeks. He handled most days pretty well, so that was really really nice. 

He's also gotten a lot more swollen again. They've been giving lasix, but it's not working as well as it had been. I'm hoping the extra fluid will come off soon, I hate seeing him like that. And it can't be helping his breathing issues. We're still sitting between 60% and 70% oxygen, on high vent settings. The plan is to start prednisolone on Wednesday, it's a steroid that can be given in a longer course. It can take a couple of weeks to have much effect, but apparently they've seen promising results in weaning babies like Antonio off of the vent with it. Hoping and praying that it really helps him. 

He's technically 7lb 3oz with all of the water weight, but they used 6lb 6oz as his "dry weight" this past week. They update that each Monday. And they are really looking at growth in terms of length, which his could be better. They'll measure his length and head circumference tonight. We did switch his feeding tube from his mouth to his nose today, which will be good for him to not have the breathing tube and the feeding tube in his mouth. And it's easier to clean his face, which I like!

Fredy and I were really hoping to have him off the vent by Halloween. Back before we moved over to this tower everyone swore we'd be home by Thanksgiving. Our goal was home by Christmas. I think it's going to take a miracle for any of that to happen at this point. So I've kind of accepted that everything is unknown, we just have to keep showing up. I've managed to get out to the house a couple of times to get some things done while Fredy was here with Antonio, which helped a lot. We're trying to make it a priority to get out of the room when we can. We actually both left and went to eat and shopped a little last Sunday, that was the first time we'd done something together since my water broke July 2nd. We have to try to weave some normal in when we can. 

That's all for now, thank you all for your prayers and gifts and support. We know that he is so loved by so many!








Comments

Post a Comment

Popular posts from this blog

no more struggle

Image
I really hate that I have to write this update tonight.  Yesterday morning around 6:20am we got a call from the PICU, Tony was coding. We physically ran to the hospital. By the time we got there he had been coding for probably 10 minutes. They told us he got upset, probably trying to poop, and his oxygen saturation dropped. Then his heart rate went with it. They tried to use the ambu bag to give him breaths instead of the vent and couldn't get his airways to open back up. After probably 30 minutes of chest compressions they decided to try to put him on ECMO. That's a machine that basically does the work of the heart and lungs for a time. At first we said okay, but after seeing how long it was taking to get started, knowing that he had been without much oxygen to his brain for more than 30 minutes, I started telling them that I didn't think we should proceed. They agreed that there was almost no chance that his brain was being perfused most of the time they had been doing CP
Read more

PICU boy

Image
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.
Read more

due date week

Image
This week flew by. Tuesday we hit a major goal, his oxygen requirement finally got down into the 30s. We haven't seen that number since the week before his PDA closure early September. That's huge. I thought it might be a fluke, but he has continued to at least touch the 30s each day since. The lowest being 33% on Wednesday. The problem is that every evening we have to inch back up into the 50's, which makes every evening feel not so great. But, it's still amazing to see that kind of solid improvement each day.  Last weekend I stumbled upon the fact that there is a unit at Nationwide Hospital in Columbus, OH, that is entirely dedicated to babies with BPD. They claim to have 99% survivability and focus on neuro development just as much as the respiratory side of things. I was shocked, I had no idea that a place like that existed. Monday I asked our provider to reach out to them for a second opinion, I had to know if they would do anything differently for him because it f
Read more