10 weeks old on 10/10
Antonio turned 10 weeks old this week on 10/10, I thought that was neat. Thankfully, but also unfortunately, where we are today isn't much different than a week ago. He had been getting his "as needed" pain medicine around the clock as if it were scheduled, but last Friday the nurse didn't want to give it until he looked agitated, which led to him becoming extremely agitated. We basically chased his agitation all day and even all day the next day after that. Sunday, Monday, and Tuesday were better days. The only problem was that they retaped his breathing tube too high again, leaving him with a massive leak even if they inflated the little balloon to try to get rid of the leak. Prior to that he had been dealing with the leak, but it was positional and could be corrected by inflating the balloon. Because we were going to have to retape him anyway, we went ahead and changed out his tube for a bigger one on Tuesday so that he wouldn't have the leak and there would be less resistance for the ventilator since they don't foresee him getting off the vent anytime soon.
After that they tried to switch him back to a better mode on the ventilator that he had been on before his ordeal on Friday, thinking that with a bigger tube he would tolerate it. He didn't, so the next morning he was doing pretty bad. I panicked, his vent numbers looked as bad as they did 3 weeks ago, I felt like we had lost all progress. They switched his mode again around noon, but he still wasn't breathing well. I think he had been struggling for too long. He was trying to breath 80 times a minute, but the vent would only give him 20. You can imagine how uncomfortable that would be. The worst part was that same day when they examined his eyes they found that his eye disease had progressed so rapidly since the week prior that he needed treatment as soon as possible to avoid potential blindness. The doctor told me that they only see that rapid decline, called "rush disease," in about 10% of babies with ROP. Tonio was supposed to get the eye injections later that day, so they didn't want to give him much sedation medicine to try to help his breathing problem until then so that he wouldn't become over sedated. That was rough. He continued to do poorly and had some labs that were off, so they began to worry that he had an infection. That won him a full work up with lots of blood draws, urine collection, and antibiotics just in case. I mentioned the possible infection when they had me sign consent for his eye injections, which led to a discussion about the risks, which led to them waiting until the next day to do the injections after he had a couple doses of the antibiotics to be safe.
Yesterday he had his injections, which he did well with. He was breathing much better after that because he was sedated, which brought up the discussion of doing IV pain medicine in a continuous drip. We decided that was probably the best course of action for him at this point. He has too many days that are wasted due to him being upset and fighting the vent. He works so hard against it that he is wasting calories as well. We've barely even been able to hold him for the past week and a half because he gets so worked up with the transfer. That's not good for anyone. They were finally able to switch him to the better vent mode and he's done pretty well on it since. At least well enough that we aren't going in the wrong direction anymore. He's on 55-65% oxygen and pretty high settings still.
So today we went to interventional radiology and got a PICC line placed in his arm. They also checked his eyes again and thankfully the injections worked great, his eyes already look much better. They'll check them again next week. Overall it was a week full of a lot of painful procedures. I hate watching him go through them. I'm really hoping that with a new tube, his eyes done, and a PICC line for sedation and blood draws, he may have a couple of stable weeks to just grow and heal. I really hope. And I see the slightest of improvements in his stability each week, even with all of the setbacks.
As I was typing this up one lumen on his PICC line stopped working, they are going to try to dissolve any kind of clot that could have formed in the line. They are surprised that it could have issues already this quickly. He can't seem to catch a break though, so I'm getting less and less surprised with these oddities.
Last night he weighed 6lb 3oz, the night before 5lb 15oz. He's putting on more fluid the past couple of days (they're trying to not give daily lasix), so I'd say he's probably 5lb 12oz? He's obviously gaining because he's not near as swollen as he was before, yet he's continuously weighing in higher and higher. So that's good. They started miralax when we started having constipation issues, which led to him having the opposite problem. They stopped it, and currently he's super frustrated because he swung back the other way again. We gave him a half dose today, hoping that kicks in soon.
The weeks are starting to run together without big events separating them. It's more of a string of struggles at this point that just keep coming around again and again. It feels like we'll never hop off the merry-go-round, but I know we will. Until then we just have to keep enjoying the ride as much as we can.
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