May 6 update

It has been nearly 4 full days since Addison was rushed to the ICU at Children’s Hospital.

There isn’t a lot of news to report, which again, is good and bad.  The right side of her heart is regaining some function, and that is encouraging.  However, the left side has virtually no function and that has not changed since we nearly lost her Monday night.  We are hanging on to the small little pieces of encouraging news – all her other organs are working fantastic and she has had no complications from being on the ECMO lung-heart machine…at the end of the day, she is in great health, except for her tiny little heart.

The medical team at Children’s is getting ready for the possibility her heart will not recover enough to function on its own.  As I emailed yesterday, they have placed Addison on the heart transplant list.  She is at the very top of the cross-Canada list, which means the first heart of her size that becomes available will be offered to us.  However, as you all know, the transplant wait list in BC and Canada is very lengthy.  Addison cannot stay on the ECMO machine for more than a week or so because there are major complications that can develop and it is not designed for long-term use.  This means she needs a temporary solution to bridge her to transplant while she waits.  The plan would be to put in another device called the Berlin Heart.  Up until now, all the children in Canada who needed this surgery had to go to Edmonton or Toronto.  But Addison is not stable enough to move, so if her heart doesn’t recover and the only option left is transplant, doctors plan to do the Berlin Heart surgery here…the first time ever.  That would help her be stable enough for a longer-term, enough to hopefully get us to transplant.

Aaron and I and everyone else is still hoping and praying her heart recovers on its own.  But the reality of the situation, as doctors have advised us, if there isn’t significant improvement within one week from when she first got sick, it’s not likely to happen.  We are staying optimistic and positive and taking comfort in the small improvements we are seeing, and in the fact Addison still has an option if she can’t get better on her own, even if it’s not a solution any family should have to endure.

Again, though we don’t have time to respond, we have been reading everyone’s emails and messages and they really mean a lot to us and make us feel comforted.

Keep up those good thoughts and prayers!

Elaine, Aaron and Addison

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