we are going on “the list”.

After a week of trying to kickstart the Kasai surgery by giving Bea steroids and other medication – on Monday we found out her numbers haven’t changed.  Therefore, they are considering her Kasai surgery a fail.  This was a big blow.

Where do we go from here?  Well – our instructions were to go home and act like a normal family for a couple of weeks.  Our only goal – to have her gain as much weight as possible.  Nutrition is the main thing that will keep her from getting too sick too quickly.  

We will be visiting the liver team at Cincinnati Children’s on Fridays and then in 3 weeks will attend a transplant “bootcamp”.  This is when anyone who will be affected by this transplant (my parents and Jordan’s parents will be in attendance) spend 2 full days at Children’s to talk with surgeons about pre and post transplant, medications, risks, insurance, meet with cardiologists about her heart, financial obligations, and what the rest of Bea’s life will look like.  

In this bootcamp we also talk about living donors.  We’ve already decided that the only people we are going to have go through the testing to see if they are a match are Jordan & myself.  Being a living donor is too risky and we don’t want to put anyone else in that position.  Maternal matches are considered the best fit so I am praying that I can be Bea’s donor.  

Like any mom, I would give my life for Bea so giving a part of my liver is a no-brainer.

At the end of the bootcamp, we review everything and our “case” is presented to the transplant board at Children’s.  Then, she is listed.  The tricky thing about the list is that the sicker the kid, the higher up on the list they are.  However, you don’t want anyone to get too sick so that they don’t survive the transplant.  SO – that’s why if one of us is a match, we might not wait and will potentially go into this as soon as possible so she is as healthy as possible.

So.  That is that.  Not great news BUT I do feel better that we have a plan of action.  I am taking everything literally day by day and my next task is on Friday we have Bea’s doctor appointment and I get my first test to see if I’m a match.  

I will continue to update the blog with any news that comes our way.

In the meantime – #BEAstrong and purchase your t-shirt in support of Miss Bea starting TOMORROW (Thursday, April 2nd) at The Spotted Goose in Oakley.  Live out of town?  Call and place your order to be shipped. 

The Spotted Goose – 513.351.9600

3048 Madison Road

Cincinnati, Ohio 45209

Thank you for your support.

XO

Hillary

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