Hi everyone,

Well, Kara's G-tube surgery is scheduled for 6/21, and even though I know it's the best thing for her, I am starting to freak out a little bit. She has had an NG tube for about 4 months and her oral feeding has completely deteriorated in that time (she has also taken to pulling the tube out frequently!). Kara has taken virtually nothing by mouth for at least 1 1/2 months. Because she has a pacemaker and other heart issues, she will have cardiac anesthesia and may need to have the g-tube done surgically, instead of through an endoscopy. Has anyone else had their little one's g-tube done surgically as opposed to endoscopically? They told us that we would be in the hospital for 2-5 days as long as there are no other complications. Also, are there any other things I should ask about before the surgery? I have done a lot of research about G-tubes and positive vs. negatives, but would welcome any tips or comments.

On the plus side, her gastric emptying scan came back fine, her reflux is mild, she is not aspirating when she refluxes and her vomiting is lessened since we switched to prevacid 2x a day. We also have a feeding evaluation tomorrow with Early intervention, so hopefully the combo of feeding therapy and g-tube placement will help Kara get back on track with eating.

Thanks!!

Good luck with the upcoming surgery! Please let us know how it goes!

Hi Christine -- Daniel's G tube was placed endoscopically, so I can't help you there. Will they decide during the procedure whether it'll be done endoscopically or surgically? Or will you know ahead of time?

But otherwise, your situation seems pretty similar. We used an NG tube extensively before his G tube placement, and he stopped eating orally because of the NG tube. After he got his G tube, we relaxed and allowed him to make decisions about eating. And that's how he finally made some progress. We work with an ST and an OT.

Daniel's surgery and his adjustment to the tube went very smoothly. If we'd had problems, I'm sure I'd have lots of questions for you to ask. So the only thing that comes to mind is what kind of button Kara will get and when she'll get it. D got his button after only four weeks, and before that, the tube would pull and he's get some sore spots around the site.

Good luck, and be sure to let us know how it goes!

Sounds like you are well prepared and making the best choice for her. Keep that in mind and you'll be fine. Making the decision for Shae's J-tube was the hardest thing I ever did, well, except maybe for passing her to the surgeon the day of the surgery and waiting for her to come out. It really was the best thing we did for her though and should have done it sooner. I'm sure you'll have the same outcome and it will be behind you before you know it.

Shae's was done surgically, she has a small scar on her belly near the stoma and she was out in about 4-5 days. She was pretty much back to herself by then too from what I remember...though admittedly it's been 5 years so my memory may not be the best.

Best of luck, be sure to mark it on the calendar and keep us posted on how it goes!!

Wishing the best for you! Keep us posted!!

Hope that it all goes well! :hug:

Thanks everyone for the quick replies and encouragement! During the procedure they will try to insert the G-tube by endoscope, but if they can't (because of the placement of her pacemaker), they will have a surgical team standing in as back up to insert the tube surgically. Kara will get a mic-key button in 4-6 weeks if the tube is done surgically, or in 3 months if the tube is done by endoscope. I thought that seemed a little long compared with what I have heard, but I guess all hospitals have different ways of doing things and they said that the peritineum (sp?) and stomach have to fuse together before they can change out from the tube to a button. I can't wait to get that tube out of her nose and not freak out everytime she gets her hands up near her face!

Tyler had his g-tube placed surgically because of his first surgery on his stomach they wouldn't do it any other way. It wasn't to bad we did stay from Thur to Tue (early afternoon). He had pain med's and wasn't able to eat anything by mouth till after we went home (not the norm!). He has done well with the transition to the g-tube and the feedings. Tyler is doing most of what he was before surgery and his activity level is up too:) I wish you the best of luck and hope all goes well I'll be thinking and praying for you.

Hugs~
Amy mom to Tyler 33wks 5lbs now 1yr 4wks and almost 16lbs and GROWING!!!

Hello

I just read your post and could possibly answer your questions. Our lil guy Michael had a ng tube for months and then had the surgery for a g tube. The surgery went really well. He was in the hospital for a couple of days. The doctor would have released us after one night but I wanted another night just to be safe. The gtube is so much nicer than the ng. Although we were expert at taping and replacing the tube ourselves we were happy to get rid of the ng.
I hope all goes well with the surgery.

Lori, Michael's mom

You are going to be so relieved to see your angel without that pesky NG tube. My son had one for a while and it drove us all nuts. He pulled it out almost daily souch that I had to learn to put it in...NO THANKS!!!!! He had an endoscopy surgery and has a "Bard" button. I LOVE IT!!!! He even took a couole of bites of food today, and I was sure it was because he is FINALLY comfortable. I will pray for you!! You soudn like you guys have already been through lots in the hospital, so at least that is not a new thing to be scared of as much as someone with no experience of having a child hospitalized. Still, I know it is scary. Keep your faith strong and lean on us whenever you can!!
Clara