2:00 PM: It's been an exciting day so far. I had to take Sophie to the ER again this morning. She wanted me to cover her up this morning around 4:00 AM, and when I tucked her back in she felt hot. Her temp was 102.5, so I packed up and took her in to Chapel Hill. Her fever had gone down a lot by the time I got her to the ER at 6:00 AM, but they were worried about her cough and took a chest x-ray (in addition to testing her blood). Her chest x-ray showed some areas that indicate she might be headed toward pneumonia, but they decided to send us home anyhow (which is fine with me). They want us to keep a close eye on her, and she'll be taking two antibiotics (amoxicillin and azithromycin) and stopping all other medications including chemo until they tell us otherwise. I have to admit that I'm a little nervous about having her not take scheduled chemo, but I know the doctors wouldn't make that decision lightly.
What's weird is that last week all her counts were low, but the platelets were the primary concern (they had dropped by half from the previous week--from 143 to 79--and were approaching the transfusion point). This week, they're much higher (419), but now the red blood cell count was lower than it's been since her diagnosis (7.8) and her ANC (which indicates risk of infection) had dropped from 1.7 to .8 (which means we can still take her out in public, but if it drops below .5, she needs to be isolated). I'm really surprised they didn't give her a red blood cell transfusion, but by the time they realized the counts were so low, we were on the verge of leaving and that would have meant staying another 4 hours. It seems like now that she's in maintenance, the rules of the game have changed, and they're not nearly as conservative about admitting her and transfusing her as they were before. Once again, I'm really glad I chose to take her straight to UNC, even though it meant a much longer drive. The care we get there is excellent. The Peds ER doesn't open until 9:00, so we were on the adult side, but the nurses and doctors over there were just as good with Sophie.
Sophie fell asleep on the way home, and we both napped from the time we got home (11:30) until I woke up a little after 1:00. She cried for about 5 minutes and fell back asleep. Poor thing. I need to get those antibiotics in her, but I know she won't be able to manage it if she's that tired. I'll post later tonight if I get a chance and provide an update on how she's feeling.