The last few days have been at first promising and then challenging.
When I wrote the last journal entry, Ethan was coming through a fairly tough week. It had taken us some time to adjust his medications to handle his pain and vomiting. We felt that we had made some progress there, but E was still pretty tired.
I wrote that entry from the family library in the hospital. As soon as I posted it, I went back to Ethan’s room where Ethan was receiving a red blood cell transfusion. When I got there, I found a very happy and pretty energetic little guy waiting for me with his Grandma. He looked happy and bouncy and really, really good. The best I’d seen him in at least a week. Sarah took over hospital duty that evening, and I left feeling really ecstatic about his condition.
The next afternoon, Thursday, Sarah called me to tell me that Ethan had spiked a fever of 102 and his blood pressure was up. The medical staff drew some blood to test for various infections: fungal, bacterial, viral; all are possible and serious. Overnight, Ethan’s fever peaked at 104 and his blood pressure shot up to 150. (Since Ethan’s immune system is compromised, the only way his body could react to the infection was to raise his temperature and try to kill the infection by cooking it.)
While the blood samples were cultured to determine what type of infection Ethan had, they changed his anti-fungal prophylactic, and treated him with blood pressure medication and Tylenol to reduce the fever.
The results of the blood work came back this morning, positive for e-coli, which means that some fecal matter got into his blood stream. It probably got in through a crack in his skin caused by the diaper rash. Even though Ethan’s diaper rash was better than most, we noticed at least one small crack near his rectum a few days ago, and there may have been other cracks that we didn’t see.
Realistically, we think there wasn’t a whole lot that we could have done to prevent this. We’ve been as conscientious as we can be about changing his diapers and keeping him clean, and it’s impossible to know whether it entered his blood right after he had a bowel movement, after the poop had been in his diaper for 1 or 5 minutes or if we missed something when cleaning him up.
The good news is that the doctors guessed right when he first showed signs of the infection and the medications they added were good ones to get ahead of this particular type of infection. Ethan’s temperature has been back down to 98 or 99 over the last day or so, though he’s still needing medication to keep his blood pressure in check.
The other good news is that Ethan’s butt is looking better and better each day. The whole area isn’t as read and angry as it was a few days ago. And, where it’s pealing, the skin underneath is coming through healthy and whole.
While Ethan’s butt is looking better, the other end of him is starting to look more like his butt.
I think each of us had hoped that the comparative low dose of radiation wouldn’t cause Ethan’s hair to fall out. Well, that was not to be. He started losing his hair Friday, yesterday it continued to pile up, and I expect he’ll be pretty bald by the time I take over again this evening. From our perspective, his hair has nothing to do with his overall condition. It just means that he’ll fit in with the other kids on the ward a bit more, and we’ll get to play with a bald kid for a while. I’m planning to get lots of pictures so I can show them to his prom date years from now. Maybe I can paint some messages on there with finger paint. (Ya’ just gotta take your fun where you can find it.)
Overall, Ethan is doing okay. He’s responding to treatment. He’s sleeping a lot which is okay. And I think his energy is coming back day by day. In the meantime, we’re all just waiting for signs that the cells are engrafting. His white blood cell had been trending up for a few days, which may be a sign of early engraftment. Then it dipped yesterday. I haven’t seen today’s count yet, but we’re all keeping our fingers crossed.
I’m taking over for Sarah this evening. But in the meantime, Caleb and I are off to the indoor pool. See you later!