Thursday, August 21, 2008

Surgery

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.

--Trish

28 comments:

Spork Fashion said...

I have no soothing, appropriate words of comfort. So I will go with inappropriate humor.

Chicks dig guys with scars.

I love you. Call me if you need to chat or vent.

Stacie said...

Trish,

Both of my boys had double inguinal hernias (which I suppose is the more common type). The surgeries lasted no more than an hour for each boy, and the scars are totally hidden in the creases they have on their abdomin/groin area. If I didn't know they had surgery, I wouldn't know there were two scars on each of them from it.

The bad part is that they vent them to do the surgery. That is the scary part. My boys were both over 6 pounds when they had this surgery, so they came off the vent rather quickly, and Jason managed to extubate himself when they thought they might leave him on a little longer. He didn't need it and showed them. With Robbie being around the 4 pound mark, make sure you know what the expectations are for the length of the intubation.

BUT, they don't do repairs like this until the babies are about ready to come home. THe signs are pointing to the NICU finish line, my dear. This is just one more little hurdle to get through to get home.

Hugs to you. I will be sending all of my positive energy your way this week.

Much love, as always,

Stacie

april said...

I'm sorry. I know that's not the news you were hoping for. I'm glad they think it'll help get him home sooner. You'll both be in my prayers!

Heather said...

Sorry you have to go through this. I wish Robbie and you all lots of luck on the surgery. Maybe this surgery will make it easier for him to eat and gain weight appropriately. I know that's been a concern. (((Hugs)))

Anonymous said...

Once again, you have an atheist praying. Good thing Robbie's such a fighter, isn't it? Much love to you - HH/Julie

Amy said...

ARGH, I'm really sorry, honey. :( Ugh I will get my praying friends praying again for this surgery to go well and that you'll know what to decide about the port. (That part's up to you, right?)
Weird; someone was just mentioning to me their hiatal hernia the other day and I remember wondering what and where that was. I'm also confused that the condition's rare but the surgery's common; does that just mean they do similar surgeries on other types of hernias? At any rate ... crap. I'll pray that this surgery does help his reflux, and that he has a quick recovery and is able to go home with you two--and safely--soon.

Bri said...

I'm so sorry that you and Robbie have to go through this on top of everything else. You guys are always in my thoughts and prayers. Big hugs hon!

Jenn said...

So sorry you guys have to go through this. That Robbie is one tough little guy, he'll do just fine. :-) I'm sure this will make him feel better. Let me know if you need anything. *hugs*

Anonymous said...

I'm so sorry Trish. You are in my thoughts. ((HUG))

jandc

LJ said...

You are doing such a tremendous job with Robbie. *hug*

Amy said...

Trish ~ I have no words so I will only send you, David and Robbie lots of love and ((HUGS))

e.b, said...

Trish,

You and Robbie and David are amazing. I'll be thinking of you all day.

Much love,
e.b.

Robyn said...

I'm so sorry to hear about this! I hope everything goes well and I will be praying for you guys tomorrow!

Michelle said...

((HUGE HUGS))
We're all thinking of you and Robbie.

Anonymous said...

Trish,

A very good friend of mine just had a baby (full term) and after about 2 weeks of constant reflux and not eating they found out she had a hernia. Surgery was done on a Friday and the baby was home by Monday. She healed very quickly and is like a new baby - chubby little thing too.

It's not fair that you have to go through this as well. It's just not fair at all.

Darby

chipz95 said...

Saying big prayers for you guys! Hopefully this will make the little man feel better!

Nicole

Mrs. Spit said...

Aww, crap. This you needed like a hole in the head (or tummy?). Glad they have figured out the problem, but sure wish it didn't require surgery.

Excuse me while I go and get a flame thrower for the ant hill.

Anonymous said...

Trish-
I know they told you this is rare, but I'm a peds resident with many months of NICU time and I've seen tons of kids with G-tubes and Nissens (maybe it's something in the water around here, or just our large referral base). Repair of a hiatal hernia (usually plus the bonus G-tube) is one of the most common surgeries that preemies (or really any babies) get.

It is not a rare, mysterious condition. I'm sure you can find plently of parents online to talk to whose kids have had one repaired and find out their take on the whole thing (I'm sure you're already on top of this). The surgery is generally tolerated very very well. As long as they've maximized medical therapy (reflux medications, and possibly pro-motility medications like reglan although not all NICUs use them) and Robbie is still having problems feeding and growing, it makes sense to do the Nissen.

The GT sounds really invasive, but you'd be surprised by how many kids have had them. It often relieves the pressure on oral feeds so he can just "enjoy" them. I agree that the hard thing is knowing whether he definitly needs it - the Nissen might help things a lot by itself... BUT, the risks of a second anesthesia to place a GT separately are probably more than the actual surgery itself, which is why the two are virtually always done together in preemies.

I hope this helps...

infertile peds resident

Two Hands said...

Praying praying praying.
I will be hanging off of my computer until I know he's okay (and by extension you). It's terrible he neeed surgery but if this means that he can pack on the pounds after *and* no more pain for him then it's a good thing to have done.
I am so so so so sorry that you and Robbie have to go through all of this though.

wanttobeamom said...

Trish, I know this is all overwhelming and scary right now. It does sound like he's in good hands. I wish I had more words of wisdom for you. Just know I'm praying for you guys!

Emily said...

trish,
i am praying extra hard for you. i don't have any advice or anything to add other then i am here for you if you ever need anything.

Osh said...

shit just keeps happening
hugs

Elizabeth said...

I hated seeing the word 'Surgery' at the top of the screen...

I offer prayers, hugs, and kleenex for now.

I can't help picturing the Office Space end to a Ventilator right now though. You've earned the release.

Dazzling Rose said...

There's nothing I can add that will make this better or easier. Just know that you and your son are in the thoughts of many people and we're all here hoping for good things to come.

S said...

I'm so sorry. Hugs to you and Robbie!

weeza said...

No words.
Just I love you. This sucks. It's not fair, and scream at me if you need to.

(((((Robbie)))))

I PROMISE to send you the best gift a little guy could get when this is over.
And Trish, if I win the lotto, a mallet will be sent to you to destroy the vent to smithereens

Jody said...

Well, for fuck's sake.

I probably wouldn't let them do the G tube. I barely agreed to let them put in a PICC line, and was secretly happy when they couldn't get one in Alice and she had to go without. I don't know... something about invasive procedures for a brief period of time doesn't sit well with me.

Valerie said...

I'm so sorry, Trish. I know this feels like another blow to the gut. Robbie is a fighter though, so I'm sure he'll get through the surgery just fine. I'll be saying prayers for all of you.