Post-transplant surgery update

I guess the doctors really meant it when they said this would be like a roller coaster ride.  We are still hanging on and Addison is definitely fighting all the way.
We had a pretty tense and exhausting night while Addison was getting her new heart.  Our first couple of updates from the OR were so uplifting – the new heart looked great, getting her old heart out and putting the new one in went really well and was actually done by about 2am.  However, after that, the news was not as great.  There were some issues with bleeding, which was expected because Addison has been on blood thinners for the lung heart machine.  And then we didn’t hear anything for a couple of hours, which started making us a bit nervous.  Finally at around 9am, Dr. Gandhi came out to speak with us.  While the surgery itself went really great, and initially, Addison’s new heart was beating very well, it started having less function with the relaxing part of the heartbeat when she was taken off the lung heart machine.  I guess this isn’t that unusual in heart transplants, but quite often, letting the patient rest a bit while still on life support in the OR is enough to get the new heart going.  In Addison’s case, despite giving her more than an hour to rest, Dr. Gandhi wasn’t happy with how her new heart was performing.  So the decision was made to put her back on ECMO so her new heart can get some rest.  Again, this is not unusual with transplants in newborns, but definitely not the ‘ideal’ outcome.
There are many potential complication with ECMO post-surgery, especially bleeding.  Addison has to remain on blood thinners while on the machine, and you can see how that is a big problem if you’d had major surgery.  So the next few days are again a major waiting game.  The goal is to get her off ECMO as quickly as possible because of the seriousness of the complications.  What we need to see before that can happen is great heart function.  Feels like we have gone back a few steps to where we were last week, albeit with a new heart.  It isn’t unusual for transplant patients to be put on ECMO because the whole procedure is very stressful on the donor organs.
We finally got a chance to see her about an hour or so later, and though it was tough to push those dark clouds of negative thoughts out of our minds, we realize that she is still there…it’s still our little girl lying there, and she is definitely fighting hard.
Here are the good things we are focusing on today:
The transplant surgery itself went really well.
Addison’s condition right now is stable.
All her other organs and systems are functioning great.
Her vital signs are looking really good.
She has a new heart.
Again, we really appreciate everyone’s support and love.  Keep it coming because it looks like Addison’s journey has hit a bit of a rough patch.
Love
Elaine, Aaron and Addison

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