care conference and halloween

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 had an odd conversation with them because I was under the impression that if he gets better we would try weaning him in the next couple of weeks in order to come off the ventilator. They didn't seem to be on the same page, and when I talked to his primary doctor she explained that they aren't ready to wean at all and that they may want to try the paralytic, but she wasn't ready to do that. So I asked for a care conference to have everyone in the same room to talk about a plan.

Friday afternoon we all met. The BPD doctor focused on the fact that he has "life threatening," "severe" lung disease. She doesn't think that he's anywhere near being able to be extubated, and that we need to look for him to be breathing comfortably on the vent during his care times and when he's being held rather than looking at what his numbers are showing. That's a very hard metric, he's a baby who doesn't like getting his diaper changed, like every other baby. That causes him to breathe faster, like any baby. He's also got a tube in his mouth that makes him even more angry, plus lungs that don't cooperate on top of all that. So I'm still unsure about when they will be willing to say that he's doing better in that manner. We aren't going to paralyze him at this point, they will only do that if they think that he's not improving at all and just need to try something. They also want him to be 5kg before we extubate him or talk about doing a trach so that his body can handle the support he will need off of this ventilator. He's 3.31 right now, 7lb 5oz and he's not too swollen. Other staff that I've talked to think that could be asking a lot in the amount of time that we have. He can be on these steroids for 5 weeks or more at this dose before they start tapering it. I've heard stories of kids truly feeling the benefits of them from 2-5 weeks or even after, so we won't give up hope.

The way I look at it after talking to multiple providers, there are basically 3 paths. 1) Taking him off the vent and switching to a VERY high flow nasal cannula once he's grown some and if he shows considerable improvement. 2) Option of doing a tracheostomy with home ventilator once he's at least 5kg (they probably won't be able to say how long he'll need it, but the general answer is 1 to 2 years and there are no promises that he'll come off) if he shows some improvement. 3) He doesn't get well enough to even have a tracheostomy and we run out of options. It's very hard because everyone seems to have a different prognosis for him. We have some providers who say that no one can say which path he will go down and that they still have hope that he can come off the vent. Most say that they don't see him being too severe to where he isn't eligible to get a trach. Some say that we are solely on a path to try to get him well enough to even be eligible for a trach if we were to want that and are very adamant that he is not well off. Most nurses and RTs tell us that they've seen miracles and that they have hope that he'll respond to the steroids and come off the vent. I personally can see it going any of the 3 paths. He's currently back on 65%, but we did switch his vent mode a couple days ago to try to prevent more damage to the good part of his lungs. They switched him back this morning because he's not been breathing as well on it, which I think is why his oxygen requirement is up again.

It's extremely difficult to filter every opinion constantly all day long and keep a level head. My mom brain wants to be optimistic and only listen to the positive, "Just wait til he's a teenager!" comments and shut out any negative, "his lungs are severly damaged" comments. My nurse brain can only see his numbers and gets angry at the positive comments because it knows that we may never see those days. But deep down I know that God only knows what our future holds, so we can truly only take it day by day. The hardest part is knowing what to advocate for. If it wasn't my child all emotion could be removed, but he is and it's not. Right now I'm going to continue to advocate for trial of extubation before coming off the steroids as long as I see improvement. I don't think it's fair to not give him a shot when everyone tells me that most babies get multiple failed attempts before deciding to trach or stop trying. And we're going to start clarifying "weekly goals," so as to not be blind sided by their plans being vastly different than ours again. Every 2 weeks a new primary neonatologist comes on, meaning that those goals shift and change every 2 weeks. We just have to keep communicating, as these are very important weeks.

Positives- He's still been enjoying being held, even swaddled upright. His Halloween costume turned out great and was a big hit, we think it was pretty darn cute. One of the RTs came up with the idea of him red carding his dad as a ref instead of him being the soccer player himself, I'm so glad she did! He's been alert a lot more, looking around and making eye contact, that's great to see. We've had more consistency with our nurses this week. We also finally got a window room! That makes an enormous difference. Monday we had to move out of our room because they have a policy about not being in one room more than 30 days for infection control. Unfortunately we moved to a darker, more lonely room. But thankfully a window room opened up Thursday and we jumped at the opportunity and packed up again. He needs cycled lighting with real sunlight, and we (I) desperately needed the sun too.

Praying for his lungs to rest and become less stiff and for great growth for the next week. Thankful that he's trucking along in most other ways, even if it's with the help of some medicines. And for more meaningful conversations with the people here, it's finally starting to feel like we've got a group of friends over here like we did in the maternity tower. And that he's still charming us with his sweet little face every day.