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 Thankfully we got some things accomplished this week. Tuesday BPD did their discussion about him at their biweekly meeting. I don't have all the answers yet, but according to our attending that was at the meeting, their recommendation is to move forward with a trach in the next couple of weeks. BPD did not see a need for an airway evaluation, even though everyone else seemed to agree that we should have that information before deciding anything. We don't have to do a trach just because they recommended it, but there wasn't really another plan offered other than to stay on these settings and wait. They also all of a sudden didn't see a need to wean him off his steroids even though that's why we trialed extubation, to give him a chance before weaning the steroids! We're weaning them anyway, just slowly. We are going to go ahead and do the airway eval Monday, that will tell us if there is something major that can be corrected or if there is something that can't be fixed or anywhere in between. We have a care conference Thursday with BPD/Home vent, our neonatologist, social work, and ENT (who would be doing the trach and will have done the airway eval). If it makes sense, we will probably move forward with the trach and just get it scheduled before the holidays. We're very tired of the back and forth and what ifs. A trach would mean a stable airway, less or zero sedation after a couple weeks, involved PT/OT/speech therapy as soon as he's recovered from surgery, hands out of his swaddle, playing on a play mat, being held whenever we want, and best of all no tube in his mouth. 

Fredy and I sat down with the home vent NP today and she helped us to see what life could look like with a vent at home. We both felt better afterwards, but we know it'll still be extremely difficult. More to come on that if we decide to go that route. One thing I'm concerned about is that BPD recommended traching in the next couple of weeks, but ENT has not signed off that he is ready to be trached. At our last care conference there was question if he was ready. He has significantly improved, but no one has confirmed that he's eligible. I'm going to be upset if we get all ready for him to move forward with it only to be denied. Trying to be patient and just wait for Thursday.

Antonio really had a good week, we're barely ever touching the 40s oxygen wise anymore, he's needed less doses of extra sedation than he was getting, and his pressure numbers have been pretty low consistently. PT was also very impressed with how flexible he is now, he handled her stretches really well- she even had him touching his toes for the first time(: Today was an off day, he was fussy all day. Seemed like his belly might be bothering him, hopefully we get back on track tomorrow. 

Also some really great news came this week as well, we did his MRI of his brain and it read as good as we could have expected it to. He has some mild white matter loss due to prematurity, but that was no surprise. It should only cause minor delays developmentally. Other than that the neurologist was very pleased and signed off on his case. We are so thankful, that is huge. Most trach babies that have no neuro issues have significantly better outcomes in general. We also did a CT of his ears. His little ear (right) also has deformities on the inner structures, so he will eventually most likely need a hearing aid or reconstructive surgery when he's older, closer to 6 or 7. Until then he may get a hearing aid that is attached to a headband once we're home. His left ear seems to be normal though so that's good. They're going to do a bone conduction test sometime soon to test his hearing, so that will be interesting. 

I also figured out how to put snaps on his clothes, which is really nice. I was just cutting his sleeves off and down the seam, which left the shoulder pieces just flapping. It's nice to be able to dress him comfortably again. 

Hopeful for a solid plan a week from now!


^We had to keep him sterile for a line change, but we realized that he loves being in his own little fort, so we left it up. Since then if I can't get him to go to sleep we'll put him in his fort, and it truly seems to help him!






^Decided if we are going to spend Christmas here we might as well enjoy the season!





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