Lydia's Liver Story

Lydia had an appointment on Monday at the liver clinic. She had gained about half a pound so it was good to be on the upswing again. However, I am frustrated because at the last two appointments the doctor has said Lydia needs to be bigger than what was originally discussed to be able to use my liver. On Mon. she said Lydia should be about 10 kilos which is 22 lbs. They originally said she should be about 18 lbs. Lydia is now on TPN(IV nutrition) for 18 hrs. a day instead of twelve so we are toting around two big bags with her instead of one. She scoots around on her bottom on the floor, but gets frustrated when she is stopped by reaching the end of her cords. She is more jaundice. Her blood labs are getting worse. She cries from pain when she is in certain positions. Her skin on both cheeks has been bleeding when we remove the tape to replace her feeding tube. All in all she's not getting any better the longer we wait for the transplant and I really don't want her to be hospitalized before transplant if possible. I know this is a lot of griping, but I'm just feeling ready to get her on the improving side and I'll bet if she could talk she would tell us she would love to feel better, too. Eden is doing so great with her new liver and I'm anxious for liver to join her on that side of things. So anyway, I'm going to ask why Lydia's weight requirements are going up, because I really doubt my liver size has changed much over the past few weeks.
Thank you everyone for your love and support and caring. I love you all very much!