Long Day in Pittsburgh

So this morning about 9:00 Mikey, Mikaela and I got to the Children's Hospital of Pittsburgh for labs and appointments with Dr.Shneider (liver), transplant (Dr. George M), Dr. Ellis (nephrology) and the transplant educator (Beverly). The liver team and the kidney team will get together and discuss Mikaela's case from both sides and made a decision for sure but, based on our meetings with them I individually, it looks like it is time for the next step...liver/kidney transplant. On Friday, they will have a meeting to list any patients needing transplants so, our transplant nurse will call us then to let us know for sure! WOW- we've known this day would come but it's hard to believe after Friday we could get a call anytime. So much to do!! Although, I need to say that the 1st recommendation for transplant will probably be denied (based on Mikaela's lab numbers, she won't look like she needs a transplant yet-typical for kids with ARPKD/CHF). The doctors will appeal it based on several other things going on with Mikaela. They are pretty confident that through patient advocacy she will be listed.

Although it is a lot to take in, I think Mikaela would have been more upset if they would have said we should keep waiting. She really just wants to feel better! Beverly was great at explaining what would happen from the time we get the call to the time she gets to go back home to VT. Lots for a 13 yr old to think about for sure.

We got back to the hotel about 6:00. Exhausted, Mikaela is sleeping. We will have an early morning tomorrow but, it will be nice to get back to Burlington in the early afternoon.

I'll be back to let you know what they say Friday! :)