Ulysses is out of intensive care and onto the regular pediatric floor! He’s doing as well as any baby ever does after cardiac surgery. We couldn’t have expected a better recovery, so far. Yay!
Because baby Uly doesn’t eat any food that I don’t make for him in my own in-house milk machine, I can order up meals while I’m here for myself. I’ve been mostly avoiding this nursing mom “perk” and relying on the cashews and tangelos in my bag, but I started feeling shaky last night and needed something more. The husband was gone for the night and I didn’t want to leave my boy’s bedside, so hospital food it was!
Thanks a lot, hospital, for perpetuating the myth that vegetarians like to eat plain cold tofu! It’s not that I LIKE plain tofu, oh no! It’s that I don’t eat flesh (13 years and counting, though I keep threatening to eat meat, a post for another time!) and I need protein. Granted, I didn’t know it would be cold and plain when I selected tofu as my salad add-in. I assumed it would be at least marinated. Anyway, I ate it all because I was hungry, which is probably why anybody with tastebuds would eat that bland, squeaky stuff. Sure we eat tofu at home now and again. But plain? No. Just because I ate it, doesn’t mean I like it!
Just because I’m handling this all reasonably well sure as heck doesn’t mean I like it!
I am glad for the mostly unflappable demeanor of hospital staff. It’s a comfort feeling like they’ve seen it all before. Even if they haven’t. I know my son has an unusual body. But I don’t want to see that surprise flash across your face when you see him for the first time. (I know this will always be part of his experience, and mine through him.) Thankfully, there been very few of those confused flinches here in the hospital. Hospitals should be very safe places, especially where things like differences and special needs are concerned.
It figures that one of the only double-takes came from the same nurse who administered meds like it was a squawking cat on the other end of the syringe and not a baby. Slow and steady, dude, your aim-and-fire-and-see-what-sticks technique could use some compassionate improvement. But this was in the middle of the night and I was punchy and exhausted so I met his vague insensitivity head on, “clearly it’s not every day you get to see such an awesome baby who looks like this!” Nurse dude caught himself and his expression immediately shifted from perplexed to neutral, “well, he’s a handsome guy, he’s got that going for him.” And I answered, “he’s got a lot going for him. Ulysses is amazing.” That’s what I said, but my voice was all Eff you. Eff you for letting your judgment seep out where I can see. Eff you for over-correcting with an insincere compliment (but not untrue! Super Uly is a beautiful baby). Eff you because it’s past 1 a.m. and I’m so tired and I know you want me to leave and sleep in the quiet room (because he kept saying, “why don’t you leave? I’ve got it under control here?”) but I don’t want to leave because I don’t like you and I don’t trust you, so there. (that’s a lot for a tone of voice to convey!)
For the record, I did go to the quiet room because I was just that tired and I did intend to stay but just a couple hours but I overslept and got myself locked out of the picu until after shift change.
I beat myself up about that gaffe all morning, but as Ma* says, “all’s well that ends well” and I’m typing this with my left thumb because my right arm is full of sleeping baby. It’s good to be able to hold him again, even if I can’t pick him up out of his bed by myself. He’s still attached to lots of stuff (but not as attached as yesterday!) and maneuvering him is tricky.
We might go home as soon as Saturday! In my limited experience, hospital discharge can take longer than expected, so I’m not holding my breath or anything. But it’s good to see homeward progress. Ulysses is weaning off of oxygen and still has two chest cavity drain tubes in place, which might be removed tomorrow. His post-extubation raw throated cry (sad baby dinosaur!) is sounding better already and he’s starting to wake up and open his eyes now and again. It’s torture, what we’ve put him through, really. But there was no other way.
And the thing about Ulysses is that it’s not heart surgery and then we’re home free. But one thing at a time. We’ll climb the next hurdle when we reach it.