May 18 update

One more day down…and that means one more day closer to going home!

Addison had another good day, and she is actually doing so well, we got booted out of our ‘suite’ in ICU – we were in one of the rooms designated for isolation or ECMO so it has sliding glass doors for a little more quiet. Now we are in the general population with a curtained-off cubicle. At rounds this afternoon, there was even talk about when she can move upstairs to the regular ward.

There is a small complication post-surgery that was confirmed today. Addison has something called chylothorax, which in the simplest terms is excess lymphatic fluid in her chest cavity (wikipedia it if you are really interested). The way to get rid of it is to get her off breast milk and feed her exclusively a special type of formula. She will have to be on this formula for at least a couple of weeks. On the up side, after being fed through a tube in her nose for the past two weeks, she got to try out a bottle today. Addison has lost a pound or so while in the ICU so we need to get her eating as much as she can as quickly as possible.

Thanks for all tne continued good wishes and prayers. It’s always a highlight to open up the inbox and see messages of encouragement and hope. You have all helped us get through this.

Love
Elaine, Aaron and Addison

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