So Elise did well with her first unit of blood last night.  She pinked up and was in a really good mood.  It took me until after 11pm to get her to go to sleep, she was being so silly and playful.  It was really nice to see her that way after so many weeks of her not feeling well.  They gave her another unti today and she was napping as I came home to shower and walk the dogs.  Jason is with her while I take my break.  Next step is to start her on a medicine called Bosentin.  It is a drug specific to PH, but is not FDA approved for kids so there is a lot of paperwork to go through.  It causes liver toxicity so she will have to have monthly lab draws, and it has teratogens so I will have to wear gloves when handling it.  She is still very deoendant on her oxygen and we are still trying to figure out why.  Her cardiologist here is going to consult with her cardiologists in St. Louis to help figure things out.  Hematology is still working on a cause for the anemia too.  So she will remain in the ICU throughout the weekend and possibly into early next week.  They will not release her when she is so dependant on O2.  Jason leaves this weekend for a conference in D.C., so I will be at the hospital round the clock.  Luckily we have some amazing friends who are going to help with the dogs.  Thank you guys!
I'll post again tomorrow evening. -Kristin