Erin slept over a 12 hour period of time last night and only woke briefly four times. She was pretty easy to get back to sleep. I was so thankful that she got a good rest. We had fabulous nurse Suzanna during the night, she was in and out like a mouse. This morning Erin's temperature was down to 100 but now it's back up to 103. She is pretty upset and grumpy. She doesn't eat anything and she is always yelling at us and saying, "no, stop it." She watches LeapFrog's "Letter Factory" over and over, it's really the only thing she enjoys right now besides Dora the Explorer.
We changed her dressing on her line today, it wasn't due to be changed until Friday, but the bandage was peeling off dangerously close to her tubing. Yesterday's nurse had pinned her line between her clothes to keep it from pulling the tape off. I went to remove the pin and we found that the tubing in her line was caught in the head of the pin. We used some pliers to break off the pin, but it had slightly punctured her line. There is a little nick in the line, we can't tell if it is broken all the way through. There isn't anything oozing out of the nick, but the nurses are going to repair her line anyway just to be safe. In the beginning we prepared ourselves for the fact that at some point her line would have to be repaired so now is that time.
We have had Doctor Verma, the Attending Physician, here and we love her. She is such a personable doctor. She really loves Erin and they seem to get along well. Dr. Verma was with us the day we checked into Primary Children's and I'm thankful to have such a competent doctor working with us. We also had Dr. Barnett, a Fellow, here and we love him too. He is so much fun, he always has a huge smile and lots of jokes to share with us. The two doctors had a look at her throat and mouth, but we can't seem to find anything that shows signs of infection. Her ANC is still zero and her blood cultures are still showing no signs of infection.
She is still on her daily doses of 3 antibiotics (Vancomycin, Gentamicin, and Meropenem) and Tylenol. We're giving her the Oxycodone on an as needed basis. We keep filling this sweet baby with medications. I haven't even taken the time to check side-effects. Oh well, the doctors think this is the way to help her out. They told me that this is standard procedure for her situation. It's frustrating not knowing what is causing her fevers, but it's also comforting knowing that she is healthy according to her cultures. We have wonderful nurse Rachel today, we've had her before and she is so kind and gentle. She and one of the head nurses are going to repair her line shortly. They asked if it would be okay if others could come and watch, I hope Erin gives them a good show. She'll probably be screaming through it all, even though they won't actually be touching her, just her line.
We had the Music Therapist here today and they are going to be coming 2-3 times a week. Erin really enjoyed the activities so much. We miss all the music we had going on at our home. Erin and the other kids were always playing on the piano or playing CD's and dancing and doing other musical activities. It's nice that we can have a bit of that here too. It's starting to rain here, it's so beautiful outside. I love rainy days!