1 week post-op

Sorry in advance for how lengthy this is, it's been a long week. Feel free to skip to the positives if you want to skip all the sad parts. I wish that I could say that closing Tonio's PDA fixed all of his problems, but unfortunately it did not. It's been very hard to keep a clear head on all of this since hearing that he needed it closed because some of the staff would tell us that it was going to help him drastically and others would tell us not to expect to see any kind of improvement on the outside. We had never even heard that he would need it closed prior to a couple of weeks ago, but after that decision was made it seemed like all of a sudden most of his problems were blamed on the PDA. He's being drifty with his oxygen, PDA. He's swollen more, PDA. His heart rate is lower, PDA. That was really frustrating because then we couldn't help but hope that if all of that was true that it would be better after. Deep down I knew that wasn't totally true, I knew it was mostly his lung disease. We were told by everyone that we should expect to see a decline in the days following, but then he should at least go back to baseline. That has not been the case.

We went into the surgery on 50% oxygen. Since then, during the day we get him down to 65% or 70%, but almost every night he gets back up to 85%-100%. We really aren't sure why he keeps having these drastic increases, we're told he's having episodes or getting drifty with his sats. It's frustrating because we don't have those during the day, and I'm not here at night to see what is causing it. I've brought it up to the providers and they are confused as well because they're seeing an increase in oxygen requirement but no events charted. They're going to put a note in about troubleshooting before just increasing the oxygen. I've been really tempted to just stay the night, but everyone has advised against it. My mental health would suffer greatly, and Antonio needs me to not lose it. Either way, he's not on 50% day or night. His body basically responded to having surgery with the same kind of inflammatory response that it had when he was septic, but less severe. He became extremely swollen, has needed more pressure support on the ventilator to keep his lungs open, and the increase in oxygen requirement. After a few days they started coming to the conclusion that maybe it wasn't just his body adjusting to the new blood flow like they thought at first. So we've tried some different vent settings, hoping that his lungs would get good and opened up and we could just let him rest and his body heal and grow. The problem is that he can't stay on those settings very long because they can also cause damage to his lungs. He's improved slightly today, but we aren't sure if he'll continue on that trajectory. So the next step is to start another course of steroids, this time with no expectation to extubate, just to get him down on his settings. The downside to that is that steroids can hinder his growth. He's grown well while on them in the past, so hopefully it won't be too much of an issue. He had gotten up to 5lb 10oz this week due to the fluid retention, got down to 5lb 4oz with diuretics, and today we're at 5lb 8oz. He's still swollen, but less, so I'll take that. We made the decision in rounds this morning to go ahead and start the steroids today.

I hate it because that means 10 days of steroids with most likely no hope of extubation and then another week or 2 weeks before we can start another course to try to extubate. I feel like everything we do is an endless cycle. Fixing his PDA (which was much bigger than they even thought) was necessary to prevent further damage to his lungs and to correct the blood flow through his heart, but set his lungs back significantly in the process. Being on the vent allows him to live and grow, which they say is the only cure for his lung disease, but it also causes damage to his lungs every day. The more oxygen we give him the more lung damage we cause, but now his eye exams are showing that he's got progressing eye disease (stage 2/3 ROP) from his oxygen saturations being low too often. If it progresses again by next week he could need treatment. Pain medicine allows him to rest and breathe easier, but causes constipation and can hurt his neuro development. Constipation causes pain, meaning he's uncomfortable and not breathing well so he needs more pain medicine and we had to hold his feeds for some time, which keeps him from growing which is the only way we're getting out of here- growth.

Positives have been very hard to find for the past week, but there are always a few. Thankfully after a week of constipation and many suppositories he's finally started to get back on track bowel wise the past 24 hours. Since his surgery he had been running cold, to the point where we had to back track to being mostly naked under a warmer. He HATED it because his arms had to be strapped down, which made him more uncomfortable on top of everything else. The past 2 days we tried putting him back in his sleep sack with a thermal hat and socks and a onesie on. At first he was still struggling, but he finally got warm last night. I've found that being cold somehow (it shouldn't, but nothing is normal) correlates with his heart rate being low and his constipation, so his heart rate has also been back to normal. His swelling has come down significantly, so he has at least started to look like himself again. It's been so hard seeing him so different. They're going to switch from lasix to diuril, a less aggressive diuretic, which makes me happy. When they restarted his feeds after surgery he spit up all night for some reason (he stopped after we put his feeding tube a little lower), and unfortunately his spit up was left in his neck creases until I got there in the morning. It caused his neck to be completely raw for almost a week, but it's healed up now. He's tolerating full feeds again as of today. That means he finally doesn't need an IV, he was poked SO many times this week. Too many to count (10?). We thought maybe he was getting an infection again with needing so much oxygen, but his labs all came back okay. Genetics saw him for his little ear last week, his blood test came back completely negative, so that's great. ENT says that they won't do anything for his ear anytime soon, and they can't tell yet if he'll have hearing issues or not. He hasn't been needing as much pain medicine it seems. And he's tolerating skin to skin a whole lot better these days, which is awesome. He used to require a lot more oxygen while we held him, which I hated because it felt like we were hurting him more than helping while everyone kept telling us how much holding helps him. We went an entire week without holding when we transferred over because of everything that kept happening and just getting to know the routine here. It was awful, and I'm sure contributed to some of his other issues (temp regulation, constipation). But, we're back to holding every day again and have found a routine with a couple of nurses so that helps a ton.

Fredy thought he was getting a cold over the weekend so he went home, which left me alone here. I was terrified that if he got sick I'd be sick, and I truly don't know what we would do without being able to come visit Antonio. Thankfully he never got sick and was able to come back Monday. Him being gone just reinforced how blessed we are to have each other through it all. I felt a significant increase in my anxiety and sadness being the only one here. He's usually able to come in the evenings and all day on weekends, which lets me get out of Toni's room without worrying or to just sit here and not be the one to go give him hand hugs when he's upset. He also comes to see him before work in the morning and gives me an update, which makes it easier just walking in the door knowing what I'm getting in to. All of that is apparently super important! We also talked last night about how glad we are to have our faith, if we didn't have that firmly in place prior to all of this I don't know where we would be in many aspects. These 2 months have tested both of us more than we could have ever possibly imagined. We recognize that it could always be worse, but this simply has been our worst. But we praise Him anyway, there are so many things being done behind the scenes that we may not see for years, or ever. And that's okay. There is a purpose.