Big Ton Making Big Moves

 A lot has happened the past week, per usual. They finally felt comfortable taking the breathing tube out on Friday last week, and everyone seemed to feel really great about his chances of staying off the vent this time. Unfortunately, as soon as they started to take the tape off of his face his oxygen and heart rate dropped. I think it would have been best to wait and let him calm down, and the nursing staff agrees. Next time I'll be sure that happens. But the tube was taken out and they put the CPAP mask on his face. It was basically chaos from that point on. He was completely worked up and his oxygen just kept dropping. They positioned him probably 5 different ways trying to help, but it just made it worse. Tried different masks and nasal prongs. Nothing was helping. He was extubated for almost 2 hours before they put the tube back. He fought so hard, but his oxygen was just sitting around 65% for a long time. His heart rate was dangerously low. And even when they put the tube back in at first he didn't come back up. It was very scary, the most scared I've been really. If things would've started off differently he may have had a chance, but we won't know. The respiratory therapists and the nurse were all in tears with me after, I don't think anyone thought it would go how it did. We also all knew that it meant we would probably be moved over to the other side of the hospital. 

Right now we're in the maternity tower NICU. After a baby has been on the vent for a month or more they like for them to move over to the Simon Family Tower NICU so that the bronchopulmonary dysplasia (BPD) team can manage them and watch them more closely. I knew it was a possibility, but I didn't think we were going to get to this point. I was very upset, I couldn't fathom why they would let us get to know the staff on this side for over 40 days and then ship us there to start all over again. I had heard that some parents will refuse and just request that they come round on their child in the room they're in and the same staff can manage them. So I spent the weekend worried and wondering if I should put my foot down. Monday I asked to have a care conference with the neonatologists from each building to express my concerns. Tuesday morning during rounds the pulmonary hypertension team came over and threw a whole new issue into the mix. The cardiologist on the team read Antonio's echocardiograms and determined that though in the report it states that his PDA is very small, it's actually not. When he looked at the echo himself, the flow of blood led him to believe that he would benefit from having it surgically closed in the cardiac cath lab. I'll put a link to a video explaining what a PDA is below. They've decided that they'll most likely do the surgery next Tuesday.

https://www.nationwidechildrens.org/conditions/patent-ductus-arteriosus-pda

https://www.nationwidechildrens.org/specialties/heart-center-cardiology/services-we-offer/animation-library/patent-ductus-arteriosus

Yesterday afternoon I spoke with one of our nurse practitioners, one of the simon family nurse practitioners, and the neonatologist that has managed him for most of his life. They were able to answer a lot of my questions regarding the reasoning behind the move, though after hearing that he needed surgery I didn't have much of a choice anyway. All surgical patients end up on that side really. The maternity tower providers are great at managing the extremely premature babies, and the simon family providers are great at managing the more chronically sick or post surgical babies. They could round on him over in the maternity tower, but if he's over in simon family they can constantly monitor him and make small adjustments rather than only every once in a while or if something is going wrong. It makes sense, but it doesn't make it much easier to say goodbye to the nurses and staff that we've grown to trust with our baby. We had finally gotten to where we had the same few for the most part taking care of him and it truly made a difference. I expressed my concerns and ideas on how to make the process smoother for families in the future. That it feels like we lost, but if he would've stayed extubated we would've won. It's terrible, and they know it is. They are hoping that I can help them make it better. I hope so. They said I should go over to see where we'll be, so I got to do that this afternoon. 

He did well after he recovered for a little while Friday afternoon, but it wasn't long until his oxygen requirements were getting higher as his steroid doses were tapering over the weekend. His last dose was yesterday. I honestly think he would've been reintubated by now even if Friday would've gone well. The neonatologist from the BPD team came this morning and explained the kinds of changes that they could make on his vent to help him be better supported. I asked if we could go ahead and make those changes since he seemed to be struggling more and more the past couple of days, so she did. He seems to be doing much better. I hate the in between times, I think they were wanting to wait until he was over on their side to make those changes, but they can't tell me exactly when that will be. There are no beds available today, they're hoping tomorrow or Friday. 

So now we wait and drag the painful process out more. I'm hoping to be there before the weekend so we can be settled before his procedure. But, I'm thankful for some answers and some plans. I'm hopeful that the PDA surgery paired with the changes in the vent will do him some good. It's just going to take time, I hear that every day. 

Positives! Saturday we put him in clothes for the first time 😀 Yesterday he finally got out of his danderoo swaddle that he had grown to hate. I had to keep telling the nurses when his oxygen would drop suddenly that it was probably because he wanted his feet free, he's very dramatic! So now he's in a sleep sack where his legs can be free. He also hasn't really ever had trouble regulating his temperatures much, and he's 31 weeks gestation, so once he hit 3lb 8oz they started counting down the 5 days of growth that he needed to maintain so that they could pop the top of his isolette. Last night he hit day 5, weighing in at 4lb 1oz! So we don't have to only sooth him and see him through the little portholes, it's nice. I do worry about him getting more stimulation though, so we'll see how he does. So far he seems to like it. He also has enjoyed skin to skin holding more in the last week. Fredy got 2 really positive experiences with that this past weekend, which was great after having the terrible time the previous weekend. I also made it out to our house on Saturday and did laundry in my own washer and dryer for the first time since I was admitted, that was really nice! Hoping to do that more often during the times that he's stable.

Thank you all for your prayers and check ins, we continue to feel so loved 💓




















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