goodbye 50s?

I can't believe how fast this week went. It feels like this week's attending just came on yesterday! Monday and Tuesday we had our primary nurse so those were nice easy days. I counted it up as far back as I can remember clearly without trying too hard, and we've had nurses that have never had him before 6 out of the last 9 days. I don't even know how that is possible after being here this long. Basically if he hasn't had a nurse on his list here, we get someone who we've never met. Today they gave me a laminated sign where I can write all of his likes and dislikes so I don't have to keep explaining our routine to each new person.

Wednesday took a turn when I noticed that Antonio's belly looked "loopy." Basically his intestines were full of air and you could see them from the outside. That meant that he had to have a full workup done -xrays and an ultrasound of his belly, blood work, and cathed for urine specimen. He also didn't get to eat for 24 hours and they placed a tube that sucked out the air from his stomach to decompress it. That was all scary, we were worried that he could have an obstruction, which could lead to surgery. Thankfully, his belly was decompressed and looking better Thursday morning so they restarted his feeds at noon, but they did find a UTI so he has to have antibiotics for seven days. That's his third one, they say that once they get one they're bound to have more and there is no avoiding it. And apparently the UTI can cause the belly issue. Very annoying because otherwise he was having a great week, but also very encouraging that he isn't reacting to this UTI like he did the past two. In the past he's gotten super sick and his respiratory status would decline quickly. He seems to be unphased so far, in fact he's had the best respiratory week he's probably ever had consistency wise.

It's all kind of a blur, but I don't think we've had to get into the 50s on his oxygen since Tuesday? That's really huge. We've gotten to the 30s almost every day and most days hung out in the mid to high 30s until the evening when we have to go up to 45 or 47, but they've been able to wean him back down to somewhere around 40 overnight. He had a great blood gas on Thursday, so good that they really wanted to wean a setting on his vent, but waited because they were afraid of his reaction to the UTI. Yesterday they made a tiny adjustment on one setting because he was doing so well still. I think after his blood gas on Monday, if we're still where we're at, they may chip away a little bit. We'll see, but they are finally really happy with his numbers. It's so nice to have a time of relief, I hope and pray that it stays that way.

He also finally got his PICC line rewired Tuesday, it was supposed to be Monday, but a mock code was called as a real code in a room in his hall so interventional radiology thought that his nurse was going to be too busy to bring him down. It was pretty bad, we waited around all day only to be told at the last minute that he'd have to wait til Tuesday. He was having to wear a little brace on his arm most of last week and weekend because the last time they changed the dressing the line came out even more and kinked off again. I'm so thankful that he can bend his arm without setting off an alarm finally!

We're still cautiously optimistic. I highly doubt he would be improving the way he is without the steroid course, and it scares me that once he's off of them that he'll have a rebound. It sounds like they can leave him on them until the last week of November or first week of December and then they have to start weaning the dose. There is much more talk of extubation now that he's more stable on these settings, which makes me very happy. We know that even if he comes off of the vent he may still end up needing a trach if they aren't able to wean the high flow or if he needs reintubated. But, it's just nice to hear them talk about trying. BPD came with this week's attending after the BPD rounds on Tuesday because I asked to speak to them about the plan and about why they don't use the nationwide settings. The gist is that those settings can be much more labor intensive, and there just isn't the staffing to make adjustments every hour or every few hours if needed. They also seemed to think that Nationwide leaves their babies intubated much longer sometimes or they keep them in the hospital longer. That definitely doesn't align with my goals for him right now, so the only way that we would try those settings is if he were to start to get worse or get stuck. There still really isn't a plan other than to let him grow and see what he does. I've kind of given up hope of knowing when or how things will happen. They can't know for sure, and I don't think they want to give me an answer and it not work out that way. So we'll just be patient and get him through each day until the day comes that they're ready to try something. Meanwhile, he needs to grow! We're still hanging out at 7lb 14oz. It's not really fair to him because he didn't eat for 24 hours this week. He's definitely not swollen anymore so I think that is his true dry weight. But now we need him to start really gaining length and weight. I think he grew half an inch last week.

Praying for great growth, more lung improvement, and the decision making of the team to be what he needs when he needs it. And for patience, we're in a routine here but we're really tired of not being home. It's getting easier in some ways because he's more and more stable, but harder because we haven't had anything close to a normal life for over 4 months now. Also, because he's now "term," I have noticed my expectations and worry about his progress jump up. It makes it feel even more like we're running out of time, and that he's missing out on a normal life each day that he's stuck on the vent. We want to be able to pick him up and console him, not give him sedation every time he's fussy. It feels even more wrong now that he's truly supposed to be home and interacting with us, and I know that's only going to get harder as he gets more and more aware. Thank you for the continued prayers!