Hair today, gone tomorrow.

Yesterday and today were a bit frustrating. The docs put Chlo on a liquid diet, but then an hour later the nutritionist comes in and tells me that i need to get her to eat or they will have to put a feeding tube in her nose. So which is it? just liquids or food? I would have been happy to give her the food she was asking for all day, but they wouldn't let me. Several times during the day Chlo would turn to me and say "Dad, i'm thinking of moms rolls with butter on them and the green things (parsley or something)." then 10 minutes later, "Dad, i'm thinking of those pizza breadsticks with ranch dressing." Cute kid.


(Stacie)
It was a bad day as Jake said. I couldn't feed chloe because of prep for surgery to get her broviac out. I was told how scary this staff infection could possibly get, so I was under the impression that she would be first on the on call list. We waited and waited. Whatever chloe can't do, that is what she wants to do. Somedays I can't get her to eat anything, and days where she can't eat anything, she wants food. She had not eaten all day and no sign of going into the surgery. I consulted with the nurse telling her how difficult this was, how can they expect us to wait so long. She was simpathetic with me and finally at 10:30 at night I decided to bag it and give her food. They came in a 11:00 for surgery. Are you kidding me? (was my first reaction). They were not so please. Next morning, a PA came in to ask what happened. Not so gently I might add. Let me just say, I am pregnant, stressed with a sick child, away from my family and living in a small hospital room. I got upset, I cried to her of how they expect me to not feed my daughter food for 15+ hours. I told her I was about to take her to another hospital. And I was. I was so disappointed in the lack of organization that day. They apologized and I never saw that PA again. She was taken that day at 11 to remove her broviac.
Anyway, the broviak is out and now she has to get her meds from an IV in her hand and another in her arm. She doesn't like them very much. We've always been pleased with how things happen at PMC, but the last couple of days have been a little irritating.

It's obvious her drugs this time are a lot harsher. Her first treatment it was several months before her hair came out. Her hair started falling out in clumps today, poor girl. The first round, we shaved her head, I couldn't stand the hair constantly in her cereal, my heart would ache to brush out the chunks of hair, this round, whatever she wants. She is letting it come out how it may.