...and I know that she's broken...and I can't change that she's broken...and I can't fix anything to make her not broken. Her body is just broken. She was born with a broken body...she came to us...or rather we went to her...with a broken body...and she lives with this broken body.
Looking at her lab work all we see is that most everything inside of her is broken. It sucks. Thats about as nice as I can be at this point.
Labs this week, we are on our third draw since Tuesday, tell us that her potassium is critically low, and calcium is critically high, her serum protein is low, albumin is REALLY low, globulin is too high, total bilirubin is critically high, direct bili is critically high as well, her AST and ALT both high, and phosphatase is really high. Thats just the metabolic prophile!
Mag and phos are normal...how I have no idea:)...but triglycerides are too high.
The CBC is a mess too. We are working on getting some blood from the blood bank right now in hopes of giving her a transfusion tonight.
I'm doing the best I can to keep on keeping on with my sweet girl and my philosophy is this...We are going to keep living, caring for, and treating what symptoms we can since the actual source can't be repaired. I'm going to allow her to play and laugh and smile and rest and live her very best life as best as she can and that's all I can do.
Oh, yeah...I'm not going to cry today either.
That's my philosophy.
One day, one crisis, one issue at a time...and then...were going to go watch our kid hit a baseball...really, really, far...I hope:)