lots to think about

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 research done on babies like Antonio. I'll put a link to a study I read this weekend to give an idea of what kind of information is out there regarding these decisions in case anyone is interested. I realized after I read it that the doctors who conducted the study were all from the BPD center at Nationwide. They stress that more research desperately needs to be done on these cases, the title is literally, "Tracheostomy in Severe Bronchopulmonary Dysplasia—How to Decide in the Absence of Evidence."

We can't go home on a trach vent until he's 5kg, he's 3.7kg right now. He can have the trach placed prior to that though, so that's a decision we'll have to be really thinking about. Do we want to wait it out up to 10 more weeks and see if he can make great strides on the vent and attempt extubation a few more times or do we want to work towards traching as soon as possible or somewhere in between. I want so badly for him to be able to have his hands free and move around more and not have to be sedated, but he has improved greatly the past 3 weeks and he could continue to improve greatly over the next couple of months. There is still a chance that he could be extubated, but it seems so slim. We do need to get an airway evaluation done in the OR in order to make sure that there isn't an airway issue in addition to his lung disease. If he does have an airway issue he could need a trach no matter what. 

We're going to set up a care conference with BPD, our attending, and the home trach vent team to figure out next steps. It will most likely be next week. The home trach vent team will hopefully be able to give us more information on how long they foresee him having the trach, most people tell us about 2 years, but that team is who truly sees these babies outpatient. Until then we let him grow and keep him on these settings. We also need to do a MRI of his brain to check for any abnormalities at some point before trying to extubate him again since it will be easier with him on the vent. And I'm going to ask about having ENT come look at his ear again since he's bigger to see if there's anything we can be doing for that while he's here. We also have Christmas and New Years coming up, which I have to factor in when I'm thinking about when we would want to move forward with the trach if he needs one. I don't want it done during the holiday weeks because those tend to be messier staffing wise and just more laid back in general, which is not great timing for such a huge change for him. Trying to not get too far ahead of ourselves, but it's difficult.

Here's the link to the study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10526913/

And some pictures of our still intubated, but beautiful little blessing of a boy 💙












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