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Tuesday, October 5, 2010

Day 41- Still at the Hospital

It amazes me that Ella still wants me to snuggle with her. Today I had to hold her down as they took the tape off of her port to check for infection. They use this "Super Glue" type of tape that makes her skin break out in a rash. We asked them to use a different kind of tape, but one of the nurses missed it in her file, and she got the super sticky one. She just cries. She knows it is going to hurt. I think band aides are the most painful thing for her because mentally she knows it will hurt no matter what!
So yes, we are still in the hospital and she still has a fever and no one knows where it is coming from. They say this is common and that we are lucky her white counts are good and she is not neutropenic so her body is fighting this- whatever it is.
Ella snuggled in her blankies
She has lost muscle strength in her legs, so we have to carry her pretty much every time she needs to get up. She cries every time someone comes in the room to examine her. Every time she tries to color or pick something up, she has to try to un-tangle the loose strands of hair from her hands. She ate 3 bites of rice for dinner and everything tastes bad. The drugs are making her appetite, well suck. So she went from never being full, to never being hungry.
This was just from taking out yesterday's pig tail
Today a song from Alvin and the Chipmunks made her laugh- that was the best part of the day.  Apparently " Mommy likes to wear, dirty underwear, with little hairs!" Gross Right? I totally don't care. She laughed for 10 minutes over it and I plan on trying it again tomorrow.
I can't even begin to tell you how much hair came out of Ella's head today. It's so frustrating because it is like a reminder ever minute that this cancer is in her body. At this point, I wish it would all come out and be done. Just another reminder that we are not in control. I was really expecting that her fever would be gone today, so now even though I told people all day it is just routine and this happens all the time (because that is what the Dr.'s told me),but I am starting to worry.
They just gave Ella some more Tylenol to get her fever back down, and hopefully she will sleep well.

Nighty night all. -K


  1. Aw poor, Tink. My prayers still going for all of you. I wish her fever would just go away and she'd feel better so she can be resting at home. Hope you all are hanging in there. Lots of love, hugs and prayers.

    Love always,
    Katie Henrici

  2. Keeping you all in my thoughts and prayers.