2:00 PM: Time feels like it just creeps by in the hospital sometimes, but when I look back at the last 24 hours, it seems like a lot has happened. Randall stayed with Sophie last night, and I went home. Although going home might sound like a desirable thing, I find that it's really not. Going home means facing the world (which, amazingly, goes on as if my daughter weren't in the hospital). Laundry still piles up, things around the house still demand attention (including the cats), church events still need to be planned, work assignments are still pending. When I'm in the hospital, it's easier to tune those sorts of things out. At home, everywhere I look there's something to be done, and all I really want to do is nothing. At any rate, I do feel refreshed (and my back very much appreciated my own mattress).
I dropped Elisabeth off at school this morning and headed straight in. We needed to have the car serviced and inspected (yet another thing we needed to take care of), so I took it and waited while they did the work. I grabbed lunch for me and Randall, and we spent about an hour together before he had to head up to Washington DC. He was feeling very anxious about getting up there (navigating, not being late, leaving us here, etc.), but I think once he gets settled he'll be really glad he went. I'll obviously stay with Sophie tonight, and Elisabeth will be staying with Ms. Patti from church. She was really looking forward to it. I think they both were!
Sophie still seems to be feeling just fine. She continues to run fevers, and Sunday night's culture unfortunately came back positive. They took another culture last night, but it has to stay negative for 48 hours, so Thursday morning is now the earliest Sophie would be released. The formal identification of Saturday morning's culture is in. You'll remember from yesterday's update that they knew it was a gram negative rod (actually I said yesterday that it was a gram positive rod, but I edited the entry to correct it--how could I have made such an obvious mistake, I'm sure you're wondering!). They have now determined that what she has is "sphingomonas," which they say is relatively unusual and somewhat difficult to treat. The little bit of research I did with a google search didn't seem to indicate that it is resistant or difficult to treat, but perhaps when a central line is involved, that complicates things. The doctors did tell Randall that the two medicines she is currently taking are the recommended course of treatment for this type of bacteria. Now we just have to wait on the sensitivities to determine whether she really does need to be on both antibiotics, just one, or something different completely. It sounded like they weren't concerned about having us administer two IV antibiotics at home, so maybe we won't have to stay here until all antibiotics are done.
They did not run blood tests this morning like they usually do (maybe because they did a blood draw late last night), so we don't know what her ANC is today. Because it was dropping so quickly, they're going to go ahead and assume she's neutropenic, which means masks in the hallway, closed doors, and (most important to her) one-on-one time in the playroom.
The other little development is that Dr. Gold (the attending pediatric oncologist--or head honcho doc) stopped by yesterday afternoon before I left. I mentioned our relief that Dr. Weston said we didn't need to talk about removing Sophie's line. Dr. Gold said it's fine to keep the line in, but that this might be a good time think about having it removed. He knows how incredibly hysterical she gets in the clinic at the thought of a needle, but he suggested that we might just introduce things slowly, with no negative associations, and see if we can ease into it. He said he would bring some EMLA cream (a numbing cream that contains lidocaine) and some "press and stick" bandages to keep it in place. He thought we could try just putting it on her hand and then taking it off a few times, just to get her used to having it on. I bet if I come up with a fun game, we can make this work. We can just try a few things out while her line is still in, and if we have several successes, we can talk about removing the line. But if it's a total disaster, the line can stay in. I have to admit that it would be really nice not to have to flush the line three times a week, change the dressing weekly, take baths without a bib and taping up the cap, go swimming, and reduce the risk of future infections. It would be great if we could make this work.