Request for PELD score of 40

Yesterday I got a shocking email from the transplant coordinator. She said that when the team met to discuss the patients listed for transplant, they decided to request exception points to get Zoe’s score bumped up to 40. I actually had to reread it. I wasn’t surprised at the bumping up, but was shocked at the number.

She explained that they want Zoe to be in a position to start getting offers. We were absolutely in agreement; we can see her starting to decline. The bleeding from her bottom, the struggle with nutrition, she seems to be fussy more often and we wonder if she is having pain. Her labs are worsening. It seems like a slow decline.

So, the process goes like this: the coordinator wrote the regional board to ask for the points to get her to 40. The board has 21 days to respond on whether or not they are granted. She said with babies/toddlers it doesn’t usually take that long to reply.

If the points are approved, she will be tied with another at that score, so it would come down to size for offers. She said based on her experience it happens usually between 1 and 3 months, but could be any time.

There aren’t as many offers in the winter months. When we met the transplant surgeon in the fall, I asked about that. He gave me the blunt answer that more accidents and things happen when people are out and about in the warmer months, and that makes sense. It still makes me sad, being a mother of young children and imagining what the other family is going to go through. It’s not that I don’t appreciate the gift, it’s all just a lot. Hard. Something I’ve not really given much thought to before being thrown into the middle of it all. A mom I talk with said that she is proud her daughter is the joyful miracle part of another family’s heartache and tragedy (her daughter has been transplanted and is doing great!) I think that is good perspective.   Some people may not want to know all of the details behind it, but I do. I need to.

Seth and I sent our labs to Cincinnati to continue the process of the living donor screening. It was a lot of blood! If one or both of us moves through this stage, the next will be imaging and a psych eval (Do you think I’ll pass that part?! I’m all over, aren’t I?!)

When Zoe had her clinic appointment Monday, I asked if the surgeon felt comfy with Zoe’s size, wanting to make sure we will be able to have it done here at Riley. The answer was yes. I asked if they felt confident we will get an offer, and the answer was yes. I asked if we should drop our living donor screening and the answer was no, we should keep that on the back burner, just in case.

As I’ve said, I have what I can only explain as a “maternal tug” to be Zoe’s living donor, for her to have part of mine, and not a deceased donor. The preference is still the whole deceased donor liver at this point. I have been assured and reassured that if the thinking changes where living donor starts to look like the better choice, they will let me know. Having it all lined up now, will spare us from doing it while in crisis mode. And that’s true, that was exactly my thinking back in the fall. I trust the team treating Zoe.

Do you know that I have no idea how to use commas?! I think they are in all the wrong places and used incorrectly! I try to reread but they all sound like they are in the right places in my mind! I think I need grammar class again.

Today I need to help Zoe to eat MORE! That’s the goal. Brody is home with a fever. What the heck is going around?! Hurry spring.

Zoe ripped out her noodle in record time this week. Doesn't she look so proud?!

But, unfortunately, it has to be a permanent accessory right now, so back it went.

My sister-in-law sent me this:

And my neighbor dropped off this, made by the ladies at her church.  

So, we wait, pray, trust.  

That’s all.

Comments

  • Kristina

    And we all wait, pray, and trust with you.

  • Diane

    Prayers for trusting the process!

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