Wednesday, August 3, 2011

Sadie's new G-button

Monday morning, bright and early, our little family headed to Phoenix Children's Hospital (PCH) for our baby to undergo a Gastrostomy. This is the formal name for G-tube surgery. She's had her NG tube (in her nose) for 10 weeks and it's been a really good thing for her. Just days after getting her NG tube, she stopped screaming all day, started sleeping all day and napping, and was just all-around a happier kid. Plus, in that 10 weeks that she's had it, she's gone from barely 18lbs to over 23lbs!! But there are negatives that came with the NG tube as well...first of all, we had to tape it to her face, so it was unsightly. She was learning to grab it and pull (I think because she got immediate feedback when this happened), so we were having to replace it almost daily. Because it went in through her nose and down the back of her throat, she sneezed a lot, gagged when she ate, and if she threw up, it just made it worse because the tube would come up with all her food! Needless to say, we were ready for the G-tube.

To do the surgery, from what the doctor and nurses told me, they put a tube down her throat with a scope, then they go in through her belly button to inflate her stomach and stretch the skin, a little incision is made (it might be more like a piercing) and the tube is placed. On top of the tube, on the outside of her belly is a little valve called a "button" and underneath, on the inside of her tummy, is a balloon that inflates with water to hold the tube in place. The picture below is what one looks like "uninstalled" so you can get a better idea.

So, we went in early Monday morning, surgery was scheduled for 9:30, we had to check in at 7:30, Sadie had had only clear liquids since 12:30, and NOTHING since about 5:30...and we sat. And we waited. And we waited some more. I think we waited in Pre-Op for an hour and a half. Luckily we had the ipad, so Sadie was able to watch Sesame Street while we waited and that made her happy.

When the doctor finally came in, he asked if we had any questions, he signed a bunch of papers, and he marked on her belly where he thought was good placement and he initialed it to make it official.
The surgery took less than an hour. We walked out of Pre-Op right at 10:00 and were called back to recovery just before 11:00, and we noticed that they tend to wait 10-15 minutes once they've had the patients in recovery before they call the family. When we saw her she was still asleep, we peeked at her belly and were actually surprised at how small the button was. I don't know what Brian was expecting to see, but it was probably similar to what I thought: oozing bandages indicating that she'd be really sore for days. But it wasn't like that at all.

She sort of woke up a couple of times, just opened her eyes and looked around. We kissed her and talked to her and let her know we were there and we love her, and then she'd close her eyes again and go back to sleep. We had to sit there until they had a room for us, which didn't take too long and before we knew it, we were off to the 3rd floor.

I had asked that when we get to our room there be a bed there instead of a crib so that I can sleep with Sadie, but we had been quicker than the guy bringing the bed, so we transferred Sadie to the crib from the surgery bed for the time being. That really woke her up. Then like in 2 minutes the guy brought the bed so we had to switch her again. This time I had to hold her for a little longer while they rearranged things, and I think I irritated her button, because it was bleeding when we put her back down. And then the pain kicked in.
She was so sad. I don't think I've ever seen her in pain like that before. They had to give her Tylenol as a suppository because nothing was aloud in her stomach. She was receiving IV fluids to keep her hydrated and that was it. The Tylenol seemed to work and she slept some more throughout the day.

However, she didn't sleep much during the night. I think part of it was being in a different environment, but a lot of it was the little boy we were sharing a room with. He didn't feel well and screamed all night long. Plus then his machines would beep when he'd get upset. It was annoying and sad and exhausting. But Sadie hardly complained. She was calm and the next morning actually pretty happy.

The nurse told us we could try to feed her orally the next morning, but Sadie's stomach couldn't really handle it, so she threw it all up. Instead we started her on a slow drip through her new tube of just Pedialyte. She did better with that. And from that we graduated up to her regular Pediasure formula. Once she did that okay, they let us go.

We were home by 5:15 and Sadie and I were really glad to be here. While Daddy made dinner, we took a bath and washed the hospital stink off. We decided to have Sadie sleep with us because we didn't know how much maintenance she'd be in the night if she was in pain, or if her tummy didn't tolerate her night feed. Sadie and I went to bed around 8:00 and we both slept hard. I got up around 6:00, but it's 7:30 now and she's still sleeping. I'm really glad we didn't have to even give her Tylenol in the night or anything. She was awesome. And now begins our life as a tubie.

PS. that pretty thing around her tube is one of my homemade G-tube pads. It's to keep the gunk off and keep her skin dry, and it's MUCH prettier than gauze! You can learn more about them or how to order some at the top of the page by clicking on the different tabs.

1 comment:

  1. Good luck with your gtube! We have a conservative doctor, who has us go initially to a PEG tube (a tube that hangs externally) at the very end of May. Since then, our son has gained nearly 6 pounds in 2 months. Its been a life-saver. Tomorrow we go back in for the AMT mini, which looks similar to what your daughter has. I just regret not doing it earlier-these are so much better than those ng tubes. : ) It really takes a ton of stress off both parent AND child. Our little one has blossomed with it. Hope you have great success!