Late Tuesday update-recommended for listing

Today was a big day for our girl.  The doctors who see Zoe met with the transplant surgeon and a few others to discuss the evaluation and they have recommended Zoe to be listed for transplant.  

There isn't an immediate hurry (she isn't critical) and there are still steps to be taken before she is on the list and they will receive offers, but they are all ready.   

She could still go on for a while, but if she were to be all approved by insurance and listed today, her PELD (Pediatric End-Stage Liver Disease) Score would be 22/40, which would potentially get offers.  

She is going to finish up this course of antibiotics and then we'll see what her labs show and whether or not she gets another liver infection.  If we see other complications now, that will bump up her PELD score.   

I actually got that call while we were down at Riley for her Vitamin K injection.  Right after I hung up the phone when we were in the room, she had the BIGGEST BLOWOUT of all time...clothes, blanket, back, hair.  THAT'S what she thinks about liver disease! 

There is more to this entire process and I'll more fully explain later, after the insurance also decides that they agree she should be listed for transplant and it becomes official.  

Big day.  

Here she is with her bestie, Alivia!  Alivia is the daughter of Stephanie Thorla, who is the Campaign Coordinator/Public Relations person for this campaign and my best friend (not in that order!)


  • ChaCha

    You are so good at expressing your emotional ride through this experience with Zoe. Love you.

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