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5/17/06 AM

8:30 AM: We had a pretty good night, but Sophie did have a very high fever (103.1) right at bedtime. That's not a good sign. It didn't make her at all uncomfortable, and it came down quickly with tylenol. As always, I took a book and sat outside her room so she could go to sleep, but the nurses kept coming in, or the phone would ring, so she was pretty much awake until I went to sleep at 11:00. Did she sleep in this morning? No! She was up at 6:30. There will be a nap today.

The doctor just came to talk to me, and he said the culture they took on the 15th (Monday night) is still negative, but it hasn't been a full 48 hours yet. He's encouraged that it continues to be negative but is worried by the fevers, expecially as high as it got last night. Because of the fever, they took another culture at 3:00 this morning. He said that if the culture from the 15th comes back positive in the next 8-10 hours, we'll have to remove her central line. If that happens, they'll do a peripheral IV (probably in her hand) until the infection is definitely cleared and then they would put in a new line before we go home. So they would only have to stick her one time--not too bad. On the other hand, if the culture stays negative, we could be going home tomorrow morning. The good news is that her ANC was 1.4 this morning, so she doesn't have to wear a mask and go to the playroom without an appointment (and can play with the other kids).

Patti called this morning to say that Elisabeth is complaining of an upset stomach and was in tears about going back to school. She wasn't sure what I would want her to do. I suggested keeping Elisabeth home a bit longer, possibly giving her Tums or Pepto Bismol, and see how she does. It's hard to tell whether she really is coming down with something, or whether she's upset about Sophie, or whether she is just not ready to say goodbye to Patti yet. Whatever it is, I figure when Sophie's in the hospital, it's okay to bend a few rules.


Hi Susan and Randall,
I went away last Wednesday evening to visit my mom for a long Mother's Day weekend. On Mondays I am out of the office for clinic, and then yesterday I was at a conference so this is my first day back in the office. One of the first things I did when I logged on was to check and see whether there was an update on Sophie (I have the link saved on my work computer). I started to read it but was confused: why are there nurses going in to Sophie's room? Then I realized she was in the hospital and felt so shocked and panicky. I went to the bottom so that I could start reading from May 11th. As you have said before, it is so easy to get complacent when things go well for awhile. I am so sorry to hear about the challenges that Sophie has been facing, and can imagine that this has been particularly hard on everyone. And what bad timing with Randall's graduation :( There does seem to be some good news now regarding being released from the hospital, and I hope that will happen soon. It will be nice to be together as a family again. As always, my thoughts and prayers are with all of you.

Absolutely. I can imagine that it is an emotional rollercoaster for Elisabeth, and some rules should definitely be bent. I hope that Sophie will take a nice long nap today and that you will get some rest as well.


This is Adrienne... I was Sophie's student nurse about almost two months ago. I was going through pictures on my camera phone and came upon one of Sophie. It brought a tear to my eye. So now that school is out I finally had an opportunity to check out her website! I am so sorry to hear that Sophie is back in the hospital and I wish I were there to hang out with her. I hope all of you aren't getting too bored! I know Sophie's birthday is coming up, so I especially hope you can go home to celebrate. Tell Sophie that her "orange nurse," as she liked to call me, says "Hi" and I will definitely be reading your updates! Sophie is such a wonderful little girl and I am so glad to be able to go online and see how she's doing!