17 Mar Update & Visitors
Once again, I don’t feel like I have much new to report from the GI floor today. Kidney and bone marrow function are not improved but not declining. We started him on a pedialyte drip yesterday afternoon (10cc/hour; that’s 1/3 of an ounce an hour, so virtually nothing). He’s not doing too well with that, but we’re going to reassess tomorrow morning. The question is whether we (1) go back to complete gut rest, (2) give him more time on this little bit through his tummy, or (3) try to push him further. The problem is that Keegan is so far from the normal kid that gets rotavirus and/or c-diff that no one really has a plan. The new drug they put him on a few days ago was supposed to be a 3-day course, but we’ve decided to continue it for the foreseeable future until the team is more comfortable that Keegan is showing consistent improvement.
For an otherwise healthy kid (or even a transplant kid) with severe enough rotavirus to be hospitalized, the benchmark for going home is normal stools and tolerating a fairly normal diet. And Keegan doesn’t usually do either of those things. I’m getting a little tired of the doctors coming in and asking me what I think we should do. Yes, I’m his mom, and yes, we’ve been dealing with his GI problems for 3 years. But sometimes, I want to scream at them, “I don’t know! You’re the doctor, darn* it!” (*Or something…) In the same vein, I certainly want them to heed my warnings about making changes slowly with Keegan. I certainly don’t want to be stuck in the “1-step-forward, 3-steps-back” tango that we spent months and months doing two years ago. Taking one step over two days, still puts us ahead in that equation. Having Audrey at home definitely puts a new urgency in treating Keegan than it did before, but we know that pushing to get him home too early will just put us right back in here. Can you sense how incredibly frustrating this is? Sheesh.
The biggest change is in Keegan’s energy and attitude. The last two days, he has had a good energy spurt morning and afternoon before crashing. It’s been nice to see some smiles and energy from him, although he doesn’t seem ready to get out of bed yet. He tolerated sitting in the chair for a little while again today while I changed the sheets on his bed, but that’s about it. I’m hoping that by the weekend, he’ll be willing to go to the playroom for a little while. I can never say enough good things about Child Life at this hospital. Today, they brought Keegan a dress-up knight costume, complete with shield and sword, from an event he wasn’t able to attend at the hospital. And they are committed to keeping him entertained, even if he doesn’t have a lot of energy to leave his bed. Tomorrow there is talk of finger painting and crafts. Oh boy!
As Keegan’s gotten older, he’s now more apt to participate with some other forms of therapy offered by the hospital. So the last two days, he had some visitors.
