The plan is that today we will bring Ezzy home. They will discharge us straight from the ICU.
It is sort of funny…I am usually chomping at the bit to get her home, and I feel almost silly still being in ICU with her at this point–she is really doing remarkably well, honestly. But I guess this is one of those stays that I am nervous about ending in some way.
I don’t know if it is because we have dug in here, preparing to stay significantly longer? Perhaps we have had all really bright, energetic nurses and super sharp, friendly, helpful doctors? Perhaps it is because we have so quickly settled in to the lovely community of frightened and tired parents in the family room?
It seems most likely, however, that it is somehow a function of the character of this stay–unlike the primarily seizure-y aura of the urgent stays of the past year, we are not really here to probe the mysteries of Esmé. This is not an open-ended stay that is ticking by without many answers. With the exception of the somewhat troubling desaturations she has that, apparently, stem from her neuromuscular problems, we are dealing with the strictly mechanical here: a surgery and the healing associated with it. We check off a list as she does the things required for discharge: pee, poop, resume a typical feeding schedule…
It is comforting, really. There is a clear end to this, so there is no need for me to push to get things moving.
There is also the fact that I have her snuggled in the intensive care unit of the only place on Earth I feel almost totally safe with Ez: our children’s hospital. We live about three hours away from this hospital. When we drive in to the city for a visit here I can actually feel the physiological change in my body. My heart rate drops, my shoulders lower.
I feel safe.
This is where many Esmé’s doctors are–doctors who we have built close collaborative relationships with over the 18 months since we began transitioning her care here. I feel heard here. I feel as though the care we offer our child at home and our knowledge of her medical status is respected, not just by a handful of people, but by everyone who walks through her door or otherwise helps with her stay–right down to the food service folks who have arranged for what might appear to be eccentric ingredients of her blenderized diet to be delivered to her room via Whole Foods and Trader Joe’s.
And for whatever reason, this particular visit has me feeling particularly in awe of that. It is such an amazing blessing to have relatively easy access to this kind of care. We are just so amazingly fortunate…I keep trying to thank everyone, half the time choking-up…the other half joking so that I don’t cry. I had to almost sit on my hands to keep from hugging Esmé’s surgeon.
But don’t get me wrong. I am so ready to resume our life, to see my kitties, to sleep in my bed for a stint of sleep that lasts longer than 2.5 hours…and to stop eating food that is available within a half block of the hospital.
Something tells me that this visit, though, will stay with us for a very long time.