Saturday, January 10, 2009
Sat PM update
A geneticist came in today to talk about what he thinks what may going on. Since Jay's 1st cousin, Amy lost 2 sweet babies to a metabolic liver disease, they are wanting to check Ella to make sure she doesnt have the same thing as them. They were sweet enough and came up and see us this And did say that she does not look the way they did with thier illnesses. He did mention doing a liver biosy at some point next week, ugh..they decided not to do the central line since one of her clotting test was abnormal..until that stabilizes they cant do it, and they cant find anywhere to stick another IV... she is not getting the IV glucose anymore, so they are checking her blood sugar every 2 hours making sure it doesnt drop again. As long as we can continue to get her to eat she should be okay. if it crashes they will have to put in an NG tube to make sure she gets the sugar in her system..We are suppose to see the GI dr some time and see what they say. they are needing more lab, but she has reached the maximum amount to be drawn today.. so tomorrow they will probably have to draw a ton again. Been a rough day, but she is a trooper... keep praying.