Hate when I am not prepared.

She is not better.  She is not going to get better for a while.  She will be getting better eventually. 

My new chant. 

Her weight has dropped almost 20 lbs because she can not eat.  She is in lots of pain, much not controlled. She has not energy because she cannot eat.  She has uncontrolled pain.  Go figure there is weight loss and pain.

I was so ready for all of this but not when she was out of the hospital, not this far out from transplant. I thought we had done our time with the hospital stuff.  I hope we did not use our best tricks in the hospital but rather have some reserves left for home. The ice seems so thin right now. 

 I was not prepared for home to be such a struggle.  I was not prepared for a child that could/would not get out of bed.  I was not ready for a child that won't open her cards or presents or call her friends.  Yes I know this is screaming depression.  There is just no way to get her to another doctor for another medication that must be taken with grapefruit juice at 2:14 each day while standing on her head reciting Beowulf in Gaelic.

I think our nurse today said it best:  Med lists should not be four pages long......

I was ready for so much of what happened in the hospital.  I am completely unprepared for the aftermath of that process. 

I guess it is really about not being able to help her get through this.  I cannot tell her it will be better after she does high dose prednison.  We both know what happens when she is on high dose steroids.  She needs to catch a break soon.  Something is needed to get over this hump.

Tracy Hentz used to say that it is never a star it is a constellation.  I beg to differ.  It is not a constellation, it is a galaxy.

I want to return to my home planet very soon.  One that looks and feels familiar. 

Discovery of the day:  Tukwilla is not just Southcenter Mall.  It has houses.  Who knew? Not only did I go there today but I found my way home!