Author: Joe Rybicki

Don’t have much time to write as we’re still settling in, but I wanted to let everyone know that we’re home and all is well.

Yesterday took a dramatic turn for the better when someone (we still don’t know who) made the decision to transfer us down the hall from our four-bed, semi-private “pod” to a two-bed room, where the other bed was vacant and exceptionally unlikely to be filled. So basically, we got what was essentially a private room. With a door. And a bathroom. And densely engineered, cushioned chairs that folded out into not-very-comfortable-but-at-least-mostly-horizontal beds.

El still refused to consider the crib, but she was much calmer overall and would sleep if being held. So we took turns walking her around, sitting down when she fell asleep for as long as she’d let us, and then crashing while the other did the same. It’s not a routine I’d recommend for fun, but it was a hell of a lot better than the night before.

Now she’s asleep upstairs, probably on the rocking chair in Mommy’s arms, who I most fervently hope is also asleep. She’s still in some pain, and very unhappy about the restraints she has to wear to prevent her from digging in her mouth, but overall just immeasurably better.

Me, I’ve got a dishwasher to unload. But I wanted to say thanks to you all for your thoughts and prayers and offers of help. The next few weeks are going to continue to be tough, so we may take you up on your offers. (Who wants to rake our leaves? Don’t all speak at once.) But for now we’re just ecstatic to be home.

Who am I kidding? “Ecstatic” doesn’t even cover it. I showered today after being awake and unwashed for most of the previous 52 hours. I may have cried a little.

Not brain power to write. Still at hospital. El hasn’t really slept because her pain is being insufficiently managed. So of course that means we haven’t really slept either, except in bits and pieces here and there.

Very frustrated with facilities and staff here. Even after half a night of El’s screaming, none of the nursing assistants made any effort to figure out what was going on; we had to push them repeatedly to revise pain meds. We also had to make a special request to get a chair that wasn’t hard wood even though they knew she was refusing to be in the crib, forcing us to hold her.

It’s also a ridiculous pain to just get off the floor, thanks to some administrative genius’s decision to make the elevator that leads right to this ward off limits to anyone but staff.

Just lots of short-sightedness going around, which of course is twice as irritating when we haven’t slept.

I’m sure at some point we’ll be getting out of here.

I just have no idea when.

As I write this, Kim is sitting next to me, sewing bits of felt into the shape of food, because it’s something to do with her hands and because she is addicted. We’re sitting in an out-of-the-way waiting area in the children’s hospital of the Cleveland Clinic. Our daughter is an hour into surgery to close up her cleft palate. She has half an hour or an hour to go.

This is, as you might imagine, rather stressful for us.

The surgery itself is no big deal. The only part of the palate that’s open is the soft palate, toward the back of her mouth, so it’s a pretty simple procedure as these things go. And the guy performing the surgery is the head of the plastic surgery department so, you know, he’s qualified.

But she’s our kid, you know? And right now she’s completely in someone else’s hands, in a situation that, while routine, still has room for mishap. She’s completely under, and has a breathing tube taking care of that respiration thing for her. I have a beeper in my pocket (a beeper!) but no other connection to her or what’s going on. So forgive me for being a little tense.

I need to go distract myself now, because I don’t have felt food to do it for me. Will update when I can.