The boy needs surgery.
He has a hiatal hernia. Part of his stomach protrudes up through his diaphragm into his espophagus. This causes a lot of reflux. They say it's severe, even though he doesn't really act like it's severe.
Apparently this is pretty freakin' rare, since the director of the NICU said in his 18 years here he's only seen this twice before.
They don't think it's related to him being a preemie. It's just a developmental anomoly that he probably would have had even if he'd been full term.
But the fact that he IS a preemie is pretty shitty because anesthesia isn't exactly fun an minor anyway, and of course, he's had lots and lots of breathing issues.
I managed to get this news and talk to the surgeon in less than a half an hour. By myself. No wasting time in the NICU.
The surgeon was nice. Handsome, too, if I'm being honest. And the nurses all tell me he's the best. One of our primaries who was on today said she would not say that about all the surgeons, but this is the one she likes. He's also the only one who will do it laprascopically, which is better.
Unfortunately, this is almost a no-choice situation. There really aren't any good treatments for it. If he were an adult, it could be managed with diet & drugs, but he's not eating a high fat, high acid diet these days. And he's in pain.
Then, because they're doing surgery anyway, they want to put a G tube in. It's essentially a little port down near his belly button that he could be fed through.
I honestly don't know how I feel about this.
They say it'll get him home sooner.
There are three things a preemie needs to go home-
He needs to be able to breathe.
He needs to manage his temperature.
He needs to take all his feedings by mouth.
Very often, the latter is the worst part.
For Robbie, he's almost off of oxygen. Temperature control is one of those things that comes with size- usually around the 4lb mark, which he's hovering at right now. (3lb 15.8oz tonight)
That leaves food. And with the G tube, that wouldn't matter. He'd learn to eat on his own at his own pace with no pressure. Anything he didn't take my mouth would go in his tube. Five or six weeks later, they'd take the G tube out at an office visit. It'll heal itself.
It sounds simple enough, I know. But I don't like extra incisions. And I don't want to feel like we're just going to get tossed home like it's no big deal that he doesn't know how to eat properly yet. And I've been told that most kids don't even need them past about 2 weeks anyway. So we're going to put an extra hole in his abdomen for 2 weeks less?
Yes, I want to go home. But food isn't what is keeping us at the hospital right now. And thus far, he's been a pretty good eater.
But they say that they'd rather do it now because if he DID need it later, it'd be a 2nd surgery.
I just hate it. I cried.
The doctor seemed confused. "You look sad. What's wrong?"
Dude. You just told me that you want to cut my less-than-four-pound baby open, shove his stomach back down and then tie it around his esophagus. He's going back on the ventilator that I hated with every fiber of my being for 5 straight weeks. Then you want to put a HOLE into his belly with a cute little plastic button on it and teach me how to change it out since they never come out during office hours, so you'll want to change it out yourself instead of going to the ER. Yeah. I'm fucking sad. And scared. And tired of all of this one-more-thing stuff.
Then, you add that this is not a common surgery. The surgeon tells me he has done it on smaller kids, but not much. And the director of the unit has only seen it twice? I'm not exactly inspired to confidence here. They reassure me that while they don't see this condition often, the surgery to fix it is pretty common. But I still don't like it. I'd prefer the surgeon could do this in his sleep because he does it all the time. But pediatric surgeons aren't exactly a dime a dozen. And I've been reassured by people I trust that he is THE BEST.
So yes, we'll do it. But I don't have to like it.
And when this shit is all over, I want to pull an Office Space Fax Machine Attack on a ventilator. I have much. much. rage against the machine.
The surgery will likely be Friday. The surgeon had an opening but wanted to make sure the Dr. Director thought Robbie's breathing was good enough for surgery first. He does, so I don't know if it's on the books yet or not.
He might need another blood transfusion before they do the surgery because his hematocrit was a little low. They were holding off on transfusing him because his bone marrow is making red blood cells on its own and they didn't want to signal to it that he didn't need to. But now they may go ahead and do it to make sure he's good and pumped up for the surgery.
I have a few more questions to ask tomorrow. It's hard to think of good, logical questions when you've had all of 15 minutes to digest that your son has a rare condition and requires a surgery you've never even heard of.
In the mean time.. well. The usual. I don't know what kind of animal this requires. Maybe we could burn some ant hills. They're small and precise. Sounds like what we need these days.