May 21 update

A few more photos of Addison today…and not a lot to say in the update, which is a good thing. We are still down in ICU for now.

We are now down to just one IV pump, and that’s actually for the formula feeding. Addison doesn’t seem to really like this special formula she has to take for the chylothorax…she actually seems to make a face when we give her some in the bottle. For now, she’s getting most of her food through the NG tube in her nose, but the idea is to give her a little bit in the bottle every 3 hours to get her accustomed to feeding by mouth. A couple of good steps today – her arterial line in her right femoral artery was removed today so she only has the one line left in her left leg, and we went for a little walk around ICU (the first time she’s been more than a few feet from her hospital crib). Addison was a big hit on our walkabout with lots of nurses and staff members stopping to say hi.

When Addison was first admitted to the ICU, they had to shave a bit of her hair on the left side for an IV line. She has always favoured sleeping on her left side and before she got sick, I had already noticed that side of her head was getting a bit lopsided. Well, with the big ECMO lines running into the right side of her neck, nurses had to keep her tilted to the left most of the time. So she has really developed a funny-shaped head, made even more obvious by the bald patch (which is slowly growing in). Even worse, Addison seems to have inherited Aaron’s hari, which kind of goes in all directions. You will see what I mean from the photos!

It has been cathartic for me to share the experience of this incredible journey with all of you through these update emails. Once Addison is moved out of ICU, I won’t be doing daily updates anymore…don’t want you to get sick of us! I have been thinking about starting a blog to chronicle ‘life with a heart transplant’…I think it would also be a great journal for Addison to read once she is older.

Hope you are having a great weekend!

Elaine, Aaron and Addison

One thought on “May 21 update

  1. This is a beautiful blog. I really appreciate the pictures too. The news is just so positive, and I’m so relieved.

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