Wednesday, October 8, 2008

Look Ma! No tubes!

We have another step in the direction towards normal.

Yesterday, Robbie had his G button removed.

It was a Gastrostomy. Essentially he had a tube that led directly into his stomach. It was put in during surgery as a "just in case" measure. Turned out, he never needed it.

It was frustrating for me because I was fairly certain he didn't need it, but all the doctors and nurses insisted it was good to have. He had only started being able to eat by mouth a couple of weeks before the surgery and hadn't had a chance to prove he was capable of taking everything on his own.

Of course, he woke up from the surgery and absolutely demanded to be fed by mouth. The tube hasn't been used since that week, but it had to heal enough as it was before it could be removed. That healing takes 6 weeks.

Which brought us to yesterday.

The actual process of taking it out took about 10 seconds. It was held in place with a balloon. The surgeon deflated the balloon and pulled and it was out.

They actually leave it open to heal on its own. It's terribly gruesome to see your son with a giant hole in his stomach.

Robbie need to have an empty stomach for the removal, so he was understandably hungry afterward. THe surgeon said I could feed him right away, so I did- in the back of the office.

After I pulled him away from my body from burping him we were both soaking wet. All of his feeding has completely leaked out of him. The gauze over the wound, his onesie, his sleeper and both of my shirts were completely soaked.

I immediately went to ask if that was normal and was told that it was.

They promised it would improve quickly. It should be completely closed within 2 weeks, but if it isn't in 6 weeks, he'll have to have surgery again.

I cringe at the thought.

Our pediatrician called for an unrelated matter in the afternoon and I told her about it. She suggested keeping him on his right side and leaning back as much as possible to keep it from leaking, so that's what we did.

She said she'd never seen one not close on its own before.

I had to tell her that I was less than reassured by that as she'd also never seen a hiatal hernia. She chimed in and said "Yeah, or a fundo that he still throws up." Yep. That's Robbie. We don't call him Remarkable for no reason!

I'm happy to report, though, that things have drastically improved. I've changed his dressing a few times and there is very minimal discharge- definitely not full feedings coming out any more.

It's still pretty gross to hear air leaking out of it. When he fusses or even just strains a little, you can hear it gurgle & hiss. But at least it's getting better. Hopefully it continues.

In the mean time, we just wait.

Here are some pictures to fill your time:

Not quite sure what those lights are...

But I think I like 'em...

My new playmat

Just checkin' it out

I wonder how it tastes?

Sure makes a nice place to sleep!