Just wanted to report and give thanks for Omegaven. It has made SUCH a difference in Ashely Kate's lab numbers.
Are you ready for this....drum roll... for the first time since ex-plant of her bowel and becoming TPN dependant in July of last year her liver function is COMPLETELY NORMAL!!!
Bilirubin-normal, direct and in direct, Liver enzymes-normal, all across the board!
She is not dying from liver failure which is the course we were headed down when we brought her very fragile body back home at the end of August. The Omegaven has turned it around and at this rate if only we had line access I can assure you we would wait a VERY LONG TIME before listing her on the transplant waiting list. Unfortunately, we don't have line access, and so the health and function of this one and only central line will determine our course for us. Currently its rocky, and has yet to declare itself and so we are still waiting to see what is going to happen with it.
I just wanted to share with you and encourage parents of TPN dependent children who may be experiencing choleostasis of the liver to push, to fight, to make calls, to not stop until they have Omegaven running into the veins of their child instead of the status quo lipid emulsion. Its worth the fight. It is so worth it.