May 12 update

Happy 1 month birthday to Addison today!
She is celebrating by keeping the doctors and nurses busy here in the ICU.

Overnight all her numbers and vital stats were great, so Dr. Gandhi decided to proceed with closing up her chest. That went off without a hitch, though her lungs were looking a bit problematic – left lung was not inflating at all, but he managed to loosen up a big mucus plug at the top of the lung, right lung was much bigger and basically taking over the chest cavity. An ECG this afternoon showed her new heart pumping great, so that was good news. But then later in the day, her numbers started steadily dropping. It got to the point where our nurse went to get the doctors…you know that’s never a good sign! They were all gathered around her bedside, they called in for another ultrasound and xray, and Aaron and I were hovering around the back of the room trying to figure out what was happening.

Turns out the giant right lung was basically compressing her heart so much it couldn’t function properly and it was impeding sufficient blood flow to all her organs. As soon as they tweaked the numbers on her ventilator, everything started coming back. So now they have figured out what the problem is, but it’s still not clear how to get her lung better. It could just be a matter of time (again, that waiting game). The best thing would be to get her off the ventilator as soon as possible, but she is pretty weak from all that she’s been through since last Monday so she’s not quite ready to breathe completely on her own.

Another small bit of good news…the 4 hours of brain monitoring last night didn’t show any seizures. As a precaution though, neurosurgery hooked her back up to the EEG today and will monitor her overnight. The preliminary halftime report after the initial few hours of monitoring today also showed nothing.

So one big step forward and a little step back today…though overall in the right direction.

I’ve attached a picture of Addison in her hospital bed. You can see her ventilator in her mouth and a feeding tube in her nose, but our baby girl is still there underneath all that stuff. And she looks a lot better than she did just a few days ago. Funny how quickly you see past all the equipment and it just becomes normal.

Elaine, Aaron and Addison

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