Update

I imagine, based solely on the traffic over the last few days (which has been amazing), that some of you are waiting for an update on Ezzy after surgery. I’m sorry to have been quiet on the subject, but it has been a bit chaotic in that slow-moving way that hospital stays can be.

First thing first, Ez had a very successful surgery. It lasted almost eight hours and was completed entirely with the laproscopic tools–which is amazing. Our surgeon is stupendous: serious, thoughtful, tireless, devoted, steady, patiently communicative. We feel so blessed to have access to him. He repaired her paraesophageal hernia, reinforced her diaphragm, rewrapped a partial fundoplication, and repaired a second small abdominal hernia at her original scar site.

We have awesome pictures taken from his scope. So unbelievable.

Ezzy did well in the OR and was sent to the Surgical Intensive Care Unit for recovery. While she was having periods of being a somewhat loopy version of herself and seemed to be doing well enough to be extubated and given only a bit of oxygen support, in the middle of the night she repeatedly dropped her oxygen levels very low. The storm of doctors, nurses, and respiratory therapists that hit our room was astounding. They “bagged” her several times…and it was all rather intense.

At the point at which things got a bit more under control one of the nurses noticed me pushed back in the room, trying to stay out of the way, but trying to see Esmé…probably just resuming breathing myself. The nurse asked, “Are you ok?” I wasn’t ok, of course…but the room was calming and I couldn’t admit to myself that I wasn’t ok…

So I said, “Oh, I’ve seen her worse.” Everyone laughed. It was a nice relief…and it was true. I’ve totally seen her worse.

She continued, however, to have these periods of having trouble keeping her saturation levels up and times when her oxygen dropped below 10% briefly–popping up with bagging. While high-flow oxygen helped keep her baseline up, it did not keep her major desaturations at bay. she had maybe seven in 24 hours. We are pretty sure we figured out that she was breath-holding (which she does at home) from pain. Her pulminologist explained that kids with neuromuscular disorders can have shunting in their lungs that makes them desaturate very rapidly, like Ez was doing. And while we have seen similar episodes at home and these seemed more intense, she isn’t hooked up to a monitor all the time so we don’t know how much lower she dropped than at home.

Fortunately she has been stable all night…sleeping soundly with no more desats, thankfully! We will be making a plan for how to deal with the breath-holding going forward at home.

It has been a bit of a difficult recovery. And we are still in the ICU. But I am so proud of her resolve, and anticipate Ezzy-sized steps going forward in the right direction.

I find myself feeling deep gratitude…for our ability to be treated in such an amazing hospital, by such intelligent and dedicated nurses, doctors, and therapists. As I look around the ICU at other families who are here with more severe illnesses for much much much longer periods of time traveling far great distances, I feel so blessed. We are so very fortunate.

So, so fortunate.