Day +1

Chloe is plagued by teething pain and we are giving her doses of morphine to comfort her. She was in good spirits this morning for awhile but then she grows too uncomfortable. So she slept a good part of the day. Which is OK since it gives her a chance to recover. She got her first dose of neupogin today which is a drug to tell the body to make more white blood cells. The chemo wiped them out and now that she’s had the transplant, we want to encourage them to bounce back. We are also on the lookout for GVHD (graft vs host disease) where the new cells attack her existing cells. This can result in anything from a mild skin rash to life-threatening complications. Sometimes it appears while the patient is still in the hospital or it can appear months or years later. But we ordered a transplant without GVHD (that’s sarcasm) so we won’t have any problems!

We were all dressed in our Longhorn gear for the TX-OU football game and Chloe was awake for some of it, watching the TV intently and listening to us cheer. We’ve put a big longhorn on her door so everyone knows she’s a fan. Being a UT facility, there are lots of Longhorns here, but strangely, many of the nurses went to Texas Tech.

We were able to play on the floor for a few minutes this afternoon and Chloe seemed very happy to have something back from her normal routine. She enjoyed sitting and was kicking her legs, and even went on her belly briefly. Despite her fatigue, she still tries to lift her head. There is a great therapist here who has visited a couple of times. He will be coming more in the next few weeks as we get more free time during the day.

It was a pretty quiet night, Chloe still has teething pain and congestion in the middle of the night. She has also stopped nursing, refusing me completely. So all of her meals are coming as breastmilk through the G-tube. What a blessing that has been! With Dennis here, I pump the milk and he feeds her some that I’ve already stored. It’s quite a process. I’ve also started using a feeding bag where we put the milk in a bag and hang it and then it drips into her G-tube, leaving us free to do whatever while she "eats" in the background. I could become very spoiled!