We are still here at 7:55 pm waiting on Lucy’s infusion company to deliver all the “stuff” we need to take our girly home. I knew that it was going to take them most of the day to get things together as Lucy has one very complicated order, but honestly I am soooooooooooo ready to go home!
Lucy is not having a good day pain wise, requiring more PRN doses of pain meds than she has in the previous two days. Lucy’s liver labs are trending up, indicating TPN cholestasis. We have run a very minimal amount of lipids, eight hours a day, for the past three days hoping that she would tolerate it, she is not. We are not going to run any lipids next week, for several reasons, but it all comes down to keeping Lucy comfortable. We are looking into an alternative lipid source for Lucy, Omegaven, but it is not FDA approved and we need to apply for compassionate wavier. It’s never easy, but it’s worth it!
We are tired and anxious, emotional and excited….
We just want to go home!