Thursday, June 11, 2009

A New Chapter...

This is a reprint written by Avery's parents, from the carepage website they maintain to keep us all informed...

(and the photos are from a trip last year to the Vineyard. Avery loves to play make-believe, and one of her favorite characters is a bossy, but charming waittress, pictured here.)

Hi everyone,
It has been a very long day and we have plenty of news to share with you.
(This will be a long update, but we hope you have a better understanding of everything by the end of it)
First of all, Avery is back on ECMO bypass. She is ok and will be on it for several days.

How did she get there?
As Cheryl mentioned last night, Avery has been very fragile and weak lately and hasn't been getting better.
Late this morning she took a turn for the worse.
As she was sitting in bed, she went into heart failure. Her nurse Lauren hit the code alert button and the ICU team went into action.
One of the doctors immediately started CPR - and it worked.
In fact, Avery woke up during the compressions and actually tried to push the doctor away.
Once she was stable the decision was made to put her back on bypass. Not so much because it was necessary at that very moment, but because she was certainly going to have another episode again soon - so why risk it?
She is stabile and her heart and lungs are getting the support they need right now.

So what's next?
That's why we're calling this update "A New Chapter."
To make a very long story short, Avery will soon be on the list to get a heart transplant.
After nearly two-and-a-half months of struggling with her coronary arteries, Avery's heart simply can't go any further.
In many ways, it's been a miracle to get five-plus years out of the heart she was born with. We are forever grateful to Dr. Delnido and everyone here at Children's for getting her this far.
When she had her biventricular repair back in December, her coronary arteries were removed and put back as part of the procedure.
They have not been the same since, which came as a surprise to all of us because this had never happened before to any of the other biventricular repair patients.
When she had her first coronary episode on March 22 it was simply the first sign of things to come.
Her condition improved - so much in fact that she was about a day or two away from going home.
That's when the second episode hit and, looking back, she's never fully recovered from it.
Add that to the fact that they will surely keep happening and the decision became very clear - it's time for a new plan.
A heart transplant is her best and only option at this point.

So what does that mean?
It's a complicated process, but here's what we're expecting to happen.
Avery will be on ECMO into next week.
From there she will be taken to the operating room (exact day not decided yet) and she will be connected to a VAD (Ventricular Assist Device)
The VAD, which they call a "Berlin heart" (that's where it's made, in Germany) is a portable mechanical device that essentially will do the work for her heart and allow her to rehabilitate until a donor heart is found.

How long will it take to find a donor heart?
Here's how her surgeon Dr. Delnido answered that one:
"I've seen it take as little as six hours and as long as a year-and-a-half."
The bottom line - Avery will be here in the hospital for a very long time.
So, while she waits for a new heart, this "Berlin heart" will basically buy us some time. Kids who have been on it in the past (about 20 here at Children's Hospital in the last five years) have been able to come off the respirator, work out with physical therapy, eat, drink, and some have even been able to ride a bike.
So how long do they think she'll be in the hospital?
It's impossible to guess at this point, but of course, we asked.
Because Avery's condition is so fragile she will be moved to the top of the waiting list once she is formally on it (she has to wait for a small infection to go away in a day or two before she can offically enter the list)
We have been told that for a child in her condition the average wait is about two-to-six months.
They will need to find a heart that has the same blood type as Avery (O positive) and one that is about the same size.
When they find a heart that matches, she'll have the surgery.
So, if they find a heart quickly, she will have a long recovery time afterwards, because she will not have had time to build up strength before the surgery.
If it takes a long time to find a match, her recovery time after the surgery would likely be shorter because she would be in better shape for the surgery.

How are you all doing to this point?
It's a lot to digest - but we're getting near the end.
Once Avery gets a new heart, another whole new chapter will begin that will surely have ups and downs that we can't begin to think about right now.
None of this will be easy - it will be a very, very long road.

Please keep the prayers and support coming!
They've helped us get this far - and we are all very grateful!
As always - Thank You!
Mike, Cheryl and Avery


Robyn said...

I can sense such strenghth and courage in this family. Love and prayers to you all.

julie king said...

god bless to all of you! i admire the strength and fortitude your sister and her family display!

Anonymous said...

Thanks so much for keeping us up to date. My hopes and prayers are for Avery (and the entire family). HUGS to you Kerri...

Saucy Chick Sherry said...

It is hard to express the feelings I have for one very extraodinary little girl that I have only met through you Kerri Jean and your blog. As a mother, aunt and grandmother myself I know a tiny bit of what Avery and her family are going through. I can only offer my thoughts and prayers and hopes for continued patience on that special miracle necessary. God Bless each of you.

Marilyn Rock said...

Where there is love, there is hope, prayers and positive thoughts! These are the things made of miracles! It will happen! xxoo

Peggy said...

I along with so many others are with you on this journey and will continue to pray and hope and support you every step of the way.
Love always,