Day 6

Finally, some sleep! Tessa only got up once last night, and then thanks to our personally guardian Casey, who kept the nurses away, we slept until 9:15. Amazing! I felt so much better today. For a while.

Tessa's itching has been totally out of control. Plus her pain has been unmanageable even on huge doses of morphine. So today they switched her to dilauded, an even more intense narcotic. She's been totally drugged up, her eyes rolling in different directions. Her pain has been better controlled, but Tessa has this adverse effect behaviorally. She becomes filled with anger and rages at us. Today is the first day I broke down and cried. Her ferociousness on top of watching her pain finally became too much for me. We have been given the option to switch back to morphine, but it's not a choice. Do we chose a medication that does a better job on her pain but fills her with rage. Or do we choose a med that doesn't do as good a job taking care of her pain, but leaves us with a little girl that more closely resembles the one we started with. The choice is not about us, so we choose dilauded.

Her hair is almost gone. As it disappears it feels almost like the last vestige of normalcy is going with it. Sigh. My spirit is feeling tattered, and we're both ready for bed. As usual it has taken two hours to write this entry. Between the fetching and spooning of ice, the constant attention that Tessa needs, and the million things that she requires (applying of creams, trips to the potty, and the various other deeds). 

Good night all.