Friday, April 02, 2010

One week later...

I have been horrible at posting this hospital stay. I have been distracted by online classes I have been trying to get done so when I have the time to go back to school I wont be as far behind. Its been a week since we have been back at PCMC. Its starting to feel like this stay will never end. We were first admitted to drain Harmonee's tummy on Thursday, our first discharge day was assumed to be Saturday. On Friday they diagnosed Harmonee with Paraflu, pushing our discharge day to Monday. On Sunday she was diagnosed with a staff infection in her central line. They put her on antibiotics and hoped that it would stop by Tuesday and we could go home. Tuesday came and Harmonee was again diagnosed... this time with a bladder infection. Our new discharge date was Thursday. Which happened to be yesterday. Unfortunately yesterday came and gone and the GI doctors told us Harmonee's temp had to stay down and constant for 48 hours. Friday (today) was our new discharge date. This time with no expectations of home the doctors told us Harmonee's sodium is to high. "Tomorrow" they say, but then adding, "don't plan on it though". What's that suppose to mean?

Harmonee has started to gain weight again though! Not as fast as she dropped but it is coming back. Her tummy looks so good too! It has stayed at 48.5 since Monday(ish). Yay Harm!

Yesterday while talking to her transplant coordinator she seemed not to have much hope of going home before her transplant. In a way that would be a good thing. Since we have been back so many times in the past 2 months and only staying home for hardly a week at a time, it seems more realistic. The hospital is where you come to feel better... after that your just open for more illness, especially a baby in her situation. Which is the draw back along with not going home in itself. Hopefully we will be able to be home by Easter. It would be our first holiday out side of the hospital since thanksgiving! Not to mention Layla is just missing her little sister. Nap time isn't the same with out cuddling up next her little Marne. Brandon (daddy) hasn't been able to come up as much as he would like either, making him want his sleepless nights back, at least for a week (hopefully more).

I will be happy to get home to sleep in an actual bed and be able to see Layla and Brandon everyday! I am due for a week of stress free family time AT HOME.

Everyone has been emailing me and text messaging me, "where are the pictures?" I am sorry, I left my phone hook up at home this time. As soon as I get my hook up I will put some on. I was looking at the pictures I have taken from this hospital stay. Healthy days and sick days, the pictures seem to go in a roller coaster with her ups and downs. You will be surprised how one night changes the way she even looks in pictures.

**Harmonee's PELD score is 24** dropped :/.

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