airway eval

Big Tone (new spelling after some input on the phonetics lol) had his airway eval today. It was supposed to be at 4pm, but for the first time in his little life we lucked out and got taken early this morning! That meant he only missed 2 feedings, which was great. 

The ENT (ears/nose/throat) doctor who performed the procedure explained afterwards that she was pleasantly surprised with how textbook his airway looked. She is used to seeing swelling, breakdown, irritation, and narrowing in these babies from being intubated multiple times and for weeks. Antonio's basically looks like he's never been intubated. That is great news because that means that she suspects he will be able to have a normal voice and swallow normally someday. I'm not sure if that means while having a trach or after, I'm going to ask that question tomorrow. The only disappointing part that comes from such great news is that we now know that the deficit is completely in his lungs. We all thought that there would at least be some upper airway issue contributing to his failed extubations, but apparently it is just the severity of his lung disease. He really needs that extra pressure from the vent to hold his lungs open. That still may be okay in the long run, hopefully he just needs time to grow and develop that tissue. If he would've had an airway problem he could've still needed a trach and possibly surgery to reconstruct the airway in the future.

Overall this news is what we wanted to hear. We wanted to make sure there wasn't something that could be fixed immediately that would allow us to trial extubation again with hopes that the problem would be fixed. We went ahead and cancelled the care conference this Thursday because since last week I've collected the answers to most of my questions that I had, and we've come to terms with the fact that he will most likely need a trach. We've asked to speak with a doctor from the chronic vent team tomorrow to tease out the rest of our questions and make sure that we are 100% making the right decision. We also want to know more about the plan going forward after the trach, how long she sees him needing it, and what she sees his path looking like in general. The ENT and pulmonologist today both said they believe the trach is the right path, and the ENT doctor said that she would be willing to do the procedure with the vent settings that he is on. There is a doctor coming on service next week that really wanted to give him one more shot for extubation, so we need to figure out if he still thinks that is a good idea or would agree that there isn't much point. 

Antonio also didn't have the best weekend, they stopped the medicine that helps him get rid of fluid and also increased his salt intake in order to try to help him grow, basically a double whammy. Apparently your bones need sodium to grow. He hated these changes, got swollen, and wasn't breathing well at all. We restarted the medicine Saturday and he's slowly done better. It's so hard and scary to see him back track like that when he's been stable and doing well for a few weeks now. Today he slept really well and was playful when awake. He's not very swollen anymore, and tonight is the first night we're starting night shift in the 20s on his oxygen! Lots of things to be thankful for. 











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