So Bad

This week has been so bad for Abby. Just when I think it can't get any worse, it does. She has many issues contributing to her overall appearance. Last week, the social worker said that if we get her pain and nausea under control, she may have some quality time left. I hope that is still true.

We have been working (unsuccessfully) at getting her pain under control. She alternates periods of screaming and complete lethargy. She started running a fever over the weekend and draining the most awful green stuff I've ever seen from the g-tube. It has been heart wrenching to see her go through this. We all still believe her spine is compressing the belly, causing pain.

Last night, she was eerily quiet, and so pale--her lips were even white. I got scared and called the on call nurse. We decided to try to get through the night, and figure it out today. That is why I'm writing from a hospital room.

Abby's platelets dropped significantly this week (almost in half), which could mean she's beginning an infection. She was also dehydrated, which I knew because of her sticky mouth and cracked lips. All of that with the fevers, green belly, and pain, prompted the pediatrician to send her here to be evaluated. So, line cultures drawn, urine culturing, c-diff pending (I hate that one, because she's on isolation until its negative) :(, chest and tummy x-rays, a surgical consult done and ruled out- Thank. You. God., ID consulted-we'll wait on antibiotics to see if something comes back positive, and a consult with the palliative care team tomorrow for pain management. Is that enough?

Overwhelmed doesn't touch what I'm feeling. She is so much care, and she's not even comfortable most of the time. I'm praying they fix that tomorrow.

I'm exhausted and can't think to write anymore. I'll update tomorrow after I know more.




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