As we mentioned in the past, people who have been through this experience before warned us that it can change from day to day. Yesterday, Charlie proved that it can also change from hour to hour throughout the day. We called to check in on Charlie around 9:30 yesterday morning. Theresa said he was requiring 27 to 28 percent oxygen, but that was nothing new - he's been hovering in the high 20s over the last week or two. Everything was okay, and she said one of us should plan to do kangaroo care with him when we came in. Since things were going well, we decided to tackle the 3 foot grass and dirty house before going in for an afternoon visit.
Little did we know that not long after our call, Charlie took a significant turn for the worse. Mid-morning, his oxygen needs started to skyrocket; he required 75 to 80 percent oxygen. Clearly something was very wrong - most likely he had an infection, so they stopped his feedings right away and put in an IV so that they could give him antibiotics. During the stress of the IV insertion, Charlie actually required 100 percent oxygen - scary. By the time we arrived at 2, he was back down to 45 percent - still much higher than they wanted, of course, but at least he was going in the right direction. Dr. Battles and Theresa explained to us that they weren't sure exactly what had caused his spike in oxygen needs. They did several labs, and one of them, his CRP, was high indicating an inflammation of some sort, which meant he had an infecction, but they hadn't identified specifically what or where the infection was. His CBC was still normal, so hopefully that indicated they had caught the infection early in the game. They were treating him with 2 wide range antibiotics to attack whatever was bothering him. They had also done an abdominal x-ray and were concerned about a spot in his bowels; if the subsequent x-ray showed that his intestines weren't moving as they should, emergency surgery might be in the cards - but we'd just have to wait and see.
We spent the rest of the afternoon watching our little guy. Obviously the morning stress had worn him out, but he was still wiggling and trying to pull out his IV- pretty amazing how quickly he figures out how to do that. He had one in his foot that was well-taped in and his foot was constricted by a boot-like piece of board to hold it in place, and he still managed to move his foot enough to push the IV out. We have a stubborn boy on our hands!
Throughout the afternoon, Charlie's oxygen requirement was lessoning, and by evening, they had weaned him back down to the high 20s, pretty much where he'd been that morning. Clearly the antibiotics were working their magic. The nurses were ready for shift change, so we left for a dinner break nearby. When we returned around 9, we were so excited to learn that Julie, his night nurse, had been able to wean him down to 21 percent, which is the equivalent of room air (the lowest the machine can go)! Charlie hasn't been down that low in weeks, so the fact that Julie could get him there and he could maintain that level was great news.
We stayed until about 11 hoping that we'd be there for the next x-ray, but the technicians work on their own timetable, and we had to head home. I called Julie around 1 a.m. to find out that the x-ray had been taken and the doctors were pleased with what they were seeing. No need for surgery yet- they'll keep monitoring him over the next few days to confirm that everything is moving as it should.
We're hoping today will be much smoother. As long as he stays steady, I'll be going back to work tomorrow - I'm planning to work while he's still in the hospital so that I can take some time when he comes home, when he'll need my attention a lot more than he does now! Luckily I work blocks from the hospital, so I'll be able to spend the lunch hour with him each day and then return in the evenings. Don't be surprised if the blog entries aren't quite as frequent over the next few months; I'm not getting much sleep as it is, and I'm about to get even less as I try to get back into early mornings in the office. But we'll do our best to keep everyone posted.
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