Hospital Day 25, and counting

A brief update:

One of Lively's blood tests was positive for cytomegalovirus immunoglobulin (CMV IgM, negative for IgG), which indicates an acute infection. This could be what is causing the vomiting, diarrhea, and elevated liver enzymes. This is a very common virus to which the majority of adults are immune due to a past exposure; most people never even know they have been exposed because they don't ever develop any symptoms. However, it may also cause gastritis, colitis, and hepatitis, among other things. The infectious disease specialists do not feel that Lively needs to be treated with big-gun antivirals with lots of scary side-effects, so I'm happy about that. Currently though, Lively feels awful. Two days ago he stopped tolerating his nasogastric feeds (meaning he threw up everything we put in his stomach), so his NG tube was switched back to the NJ tube, which involves a procedure done in radiology. Although the tube now bypasses his stomach and feeds his small intestine directly, he is still vomiting his stomach contents fairly regularly.

What breaks our hearts is that Lively just hasn't been himself the last 2 days. We've hardly seen him smile, which is completely unlike him. Here's a photo of him smiling that I took about 3 days ago. He has on new tractor pajamas I got him because he's outgrown almost all of his other pajamas since he's been in the hospital:

Anyway, we haven't seen much of this guy in 2 days. Instead, he wakes up crying, very irritable, and we're having a hard time consoling him. There's obviously something new going on with him. It's as if someone flipped a switch and something changed around 48 hours ago. I'm worried about him.

The GI specialists, like I mentioned, think that CMV unifies many of his symptoms. They told me today that it's not uncommon for children to develop a post-viral gastroparesis after CMV, which means Lively's stomach is not emptying the way it should. They recommended another medication that may help, reglan, a pro-motility agent. Lively started this one tonight, so I really hope it helps him feel better.

Pete and I are just so ready to have our whole family home together again. We're going to have a lot of work to do once that happens (Lively will be hooked up to a pump for his feeds at home, and will be getting, I don't know, a million medications a day, not to mention lots of physical, occupational, and speech therapies) but we just want to be at home. Living in the hospital is tiring us to the bone. It's time to leave.

Now I just keep on moving because I have to. I try to take care of Annie as best as I can, but she's started to have difficulty with how much Pete and I have been away from her, and so she's acting out big-time. This is difficult for me to handle because I'm so emotionally thin right now. It's easier to take care of Lively, because he just needs me to hold him, rock him, give him baths and change occasional diapers. Pete and I are trying to take care of each other too, but we're both basically in survival mode. Each day, I feel like I'm doing pretty well just by getting through the day, and if I eat something healthy, shower, and maybe return a few work-related emails, well, for that I deserve a gold star.

I know very well that I'm not really processing any of this very deeply right now. My baby was sedated on a ventilator in the ICU for 6 days? Really? I went 6 days without holding him? Huh. He's been in the hospital 25 days now, and no one really understands why he's still sick? How could that be? Must be a mistake. Perhaps when I wake up tomorrow, I'll find out that I dreamed the whole thing.

So goodnight. Hopefully my sweet baby is sleeping as well now as he was when I left him at the hospital with Pete a few hours ago.