The Latest on Antonio

After extubation Tonio was pretty sleepy the rest of the day and we were able to wean him to 27%. That's the second time we've seen the 20s since August. It's really confusing because we saw how poorly he did off of the vent, yet he has improved so much on the vent. It's two extremes. Since then he's been between 30 and 45% still. One of the attendings that has had him frequently came to visit after hearing that extubation didn't work. He talked about how there hasn't been really any proven benefit to traching before the baby is 52 weeks neurologically, I'm not sure if that includes development physically, though. And even if he does get extubated to high flow, it would be at least 18 weeks in the hospital weaning him down 1 liter a week most likely. We could potentially get home sooner than that with a trach, depending on how he does with it. I have a lot of questions, and I don't think there will be many concrete answers. There just isn't much ...

Unfortunately Antonio needed reintubated. We tried the high flow oxygen first and his heart rate and oxygen dropped dangerously low immediately. They tried the mask that allows them to give him more pressure and he was able to keep his oxygen and heart rate up, but he wasn't moving air well and was working extremely hard to breathe. The reintubation went smoothly, the whole process wasn't nearly as traumatic as the last time thankfully. We are of course severely disappointed, but we're glad to have tried and to gained the information that we did. More to come on next steps, we really aren't sure what comes next. 

Wanted to send out a quick little update before tomorrow. Ton has had a good week, he's stayed stable on his settings even with having some belly pain from his antibiotics. At the beginning of the week they started talking about how he's going into his 5th week on the steroids and how we're going to have to start weaning them soon. They were hoping to extubate before that to give him the best shot. So after a lot of discussion they want to give him a chance tomorrow, assuming he's still doing well. We are super nervous, but excited that they are willing to try. We know it could go terrible like last time, but we also hear a lot of stories about babies surprising the nurses. At least we'll have more information one way or another. They are basically going to try to put him on high flow oxygen, a lot of it. If he does well we would have so much more freedom with him, holding and playing and sitting up in chairs. It would be wonderful, but only Toni knows what he needs...

I can't believe how fast this week went. It feels like this week's attending just came on yesterday! Monday and Tuesday we had our primary nurse so those were nice easy days. I counted it up as far back as I can remember clearly without trying too hard, and we've had nurses that have never had him before 6 out of the last 9 days. I don't even know how that is possible after being here this long. Basically if he hasn't had a nurse on his list here, we get someone who we've never met. Today they gave me a laminated sign where I can write all of his likes and dislikes so I don't have to keep explaining our routine to each new person.  Wednesday took a turn when I noticed that Antonio's belly looked "loopy." Basically his intestines were full of air and you could see them from the outside. That meant that he had to have a full workup done -xrays and an ultrasound of his belly, blood work, and cathed for urine specimen. He also didn't get to eat...

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...

 Over the weekend he continued to make small improvements. We started to be able to get down into the 40s on his oxygen requirement during the day Monday and Tuesday and his pressure numbers were in the 30s a lot more rather than only 40s into 50s. Tuesday the BPD (bronchopulmonary dysplasia) team discussed his case, they do that every other week. They brought up using medicine to paralyze Antonio to try to let the vent do the work and attempt to basically deflate his lungs some. They are hyperexpanded, which makes them less pliable, which doesn't allow for good air exchange. They have been hyperexpanded basically his whole life, though. If they paralyze him, he would only breathe when the vent breathes for him, meaning they could slow his breathing way down. This would prevent air trapping and in theory allow his lungs to deflate some. They didn't initially bring that up to me when they came to see him, they had mentioned it to his primary doctor this week. That meant that I h...