pager & date

Well….we have a pager and a date.  

The pager will go off and alert us if there is a perfect deceased donor match for Miss Bea.  We Jordan carries it around everywhere.  Why don’t I?  Because if the thing went off I would freak out.

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So…Jordan is in charge.  The likelihood that the pager will go off is pretty slim considering Bea is in “pretty good health” compared to the other kids on the list.  It is, therefore, likely we will reach our living donation date.

Yes, we have a date.  The date is in early July and we are actually trying to get it moved up.  Per our doctor appointments last week, Bea has stopped growing in length and has stopped gaining weight.  My opinion is that she is at her “peak” of health and that we should capitalize on that and transplant her ASAP.  It is just so hard coordinating the schedules of so many doctors, nurses, etc etc etc.   

So – we are pushing, pushing, pushing and hopefully it will get us somewhere.

I’ve been getting a lot of questions about “what is the recovery time for Bea?  For you?  Will you have your part of the surgery at Children’s?  Will you recover next to each other?” etc etc etc.  Here are a couple answers to those Q’s….

In early July, Bea and I will be in side-by-side operating rooms – each with our own surgical team.  They will start on my surgery a couple of hours earlier and once they take a piece of my liver and a vein out of my leg (they have to take a large vein since Bea’s portal vein is compromised), they literally walk it over to her operating room and put it in.

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The surgery, in total, will take 8-10 hours.  About every hour someone from the operating room will come out to a private waiting room & give Jordan & my family updates.

Once they are finished with me, which will be earlier than they will be finished with Bea, I will go up to the ICU where they will be monitoring my condition until I am stable enough to move to the normal GI floor.  After Bea is finished, they wheel her up to ICU for about a week.   She will be in the hospital, total, for about 1 month.

As soon as I am feeling well enough, I will be able to wheel up to ICU to visit Bea every day.  After my time in the hospital (about 10 days to 2 weeks) I go home, regroup for a day and then start traveling back and forth to the hospital. 

 Since I won’t be able to drive (bc I will be on pain meds), my family, friends or even an Uber driver will take me to the hospital each day 🙂  Hopefully they will allow me to spend the night with her.

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After about a month, Bea will head home.  She will likely come home with a feeding tube and maybe a central line that will allow a nurse to come and draw blood 3x/week to check her levels.  She will be on about 8-9 medications, a lot 2x/day, and she will be on anti-rejection medication.  This anti-rejection medication compromises her immune system immensely so anyone coming over to the house has to wear a mask and we cannot take Bea to the grocery, restaurants, etc etc for an entire year.  

My liver will regenerate in about 6 weeks and I will not be able to donate a portion ever again (I already asked 🙂 ).  The good news is, is that they predict that Bea’s new liver will last her her entire life.  If she has any issues, the preferred donor becomes Jordan after the age of 3 anyway.

Bea has an incision across her belly from her Kasai surgery.  They will use that incision and she will also have a vertical incision as well.  I will just have the vertical incision.

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It is a lot to take in but we continue to be positive and confident with the care Bea is receiving at Children’s.   We couldn’t ask for a better team.

The best news yet – July will go down as the most important month of our lives.  The month our little Beazy noodle will be cured of Biliary Atresia.

More updates to come. #BEAstrong

XO

Hillary

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