Wednesday, April 07, 2010

Day 13...

Checking out all of her new cords

Mom... Whats this one go too?

New toys! For me! Okay!

Harmonee has been in a good mood all day! She spent most of her day playing in her bumbo with all of her new tubes, or toys as she prefers. The doctors didn't anything to say about her today, except "We'll see about you going home tomorrow," pause, "but don't plan on it" and we wont. Our past experience has cured us of expectations. Our future is full of waiting in many different ways.

Her liver call still hasn't come. Obviously. But we are getting closer. Dr. Book started her request to get her more points and a higher spot on the transplant list. and as everyone says about everything here... "hopefully soon!"

Brandon leaves in July for his summer training in California for a month. Thenleaves again a month or so after that for two more months of training and then to start his deployment. My friend Nikole is coming up from Hawaii to stay with me and help out with the girls until her husband returns from his deployment.
Of course we naturally want the liver to come early with the situation we are in, or anyone really would want to have their child's liver come quickly. Her weight has dropped once again. Me nor the nurses are very surprised that it has dropped. She hasn't been able to keep anything down. A half ounce of formula comes back just as fast as her meds, all over then floor, hitting everything in its path. The doctors and nurses thought that her NG tube would help her from throwing everything back up. It hasn't. So the next step is an NJ tube. Lets hope that works.

Today was our first day of not having anything to be "discussed" with doctors, nothing to keep us here in the hospital or to cause more worry then we already have. From paraflu to staff infection to managing blood labs we have nothing to tune up for this stay. Harmonee's tummy has even gotten smaller, back down to 50 cm. If she keeps this up maybe we wont have to come back once a week to get her tummy drained. Just MAYBE. We will see how things go.
**PELD SCORE: 24**

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