G-tube Encouragement (Any success stories?)

Elizabeth - posted on 03/05/2011 ( 4 moms have responded )

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Does anyone have a G- tube success story? My daughter is going for surgery tomorrow for a PEG tube to be placed. Her diagnosis is Failure to Thrive due to low caloric intake. She has no other problems besides not eating/drinking enough to properly gain weight. No reflux or any other mechanical feeding problem. She eats slow and small amounts.

She had an NG-tube for 4 weeks to determine if, when given more calories, she gain weight. She gained almost 3 pounds (1.3 kg)! When given time to see if the NG-tube had stretched her stomach or stimulated her appetite she lost almost half of what she had gained. Her intake was still too small. This is when we decided the G-tube may be the best thing for her at this point. She is 20 months old and 15 pounds (6.8 kg).

My biggest concern is the length of time she will have the G-tube for. The doctor said at least one year. Have any of your children been successfully weaned off of the g-tube and able to eat enough on their own?

Any encouragement would be helpful.

Elizabeth

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Elizabeth - posted on 07/04/2012

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Thanks, Jamie. For some reason I just saw this post. I just joined the group on facebook after reading this.

Jamie - posted on 04/03/2011

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Hi everyone! My son had his g-tube placed at 10 mos. He is now 2 1/2. I started a support group on facebook called pediatric feeding disorders/FTT/gerd. If you are interested, put it in search or friend request me and I can add you. There is a lot more activity on the facebook site, rather than Circle of moms. A lot of the group has feeding tubes..some wening, some just beginning. Everyone has a ton of advice and ready to offer support. It is a long journey to go alone and after 2 yrs I finally have people who "get it". It is awesome. Feel free to ask away too..there are always questions.

Elizabeth - posted on 03/17/2011

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Thanks for responding, Katy. I do hope everything went well for your daughter. It's a big adjustment. And a bit scary. Let us know how it went.

My daughter's surgery went well. They ran a continuos feeding to make sure she could tolerate it and then gave her bolus feedings to see if she could also handle those before releasing her. We only stayed in the hospital for the normal 48 hours. It was absolutely wonderful to come home. Hospital stays are awful. :(

She is still eating but tiny, tiny, tiny amounts. 1 olive, 2 tiny cubes of avocado, three tiny bites of of a slice of bacon and drinking her favorite thing... water.

We just got set up with an excellent occupational therapist through an early intervention program who specializes in feeding therapy with children with g-tubes. She is already very encouraging and came to my daughter's doctor appointment with us. Her goal is to help us keep our daughter eating and making mealtime enjoyable.

She would not have to have the bolus feeds through the tube during the day if she would take the Boost Kid Essentials 1.5 orally but she will not drink it! Plus she is so full from the feedings. But we know it is crucial that she gets the proper nourishment right now. And finally we can make sure that she is getting it. The tube is a little intimidating to me but I will get used to taking care of it.

The tube bothers her a bit. But she is fine when it is out of site. It does not hurt or cause her pain. We keep the tube up in her onesie, bring it out through a hole, and tucked into the back of her pants or tights. If the tube is left hanging she holds it up, stands still and screams "mom" until I tuck it back up.

Something that has really helped her is her doll. We placed a PEG Tube (given to us by someone at the hospital) in her favorite doll. We gave her a tiny 10cc syringe and she pretends to flush it all the time.

Overall it's a big adjustment. I am glad that the surgery is behind us. It went perfectly fine. She is already gaining 1 - 2 ounces a day and has so much energy! We just need to continue working on the oral caloric intake.

Katy - posted on 03/16/2011

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I am having the same thoughts as you! We are going in tomorrow for my daughter to have a g-button put in. She is three years old and only weighs 21 pounds. She is failure to thrive because of low caloric intake. She does have GERD, but we are postponing the Fundo surgery at this time. We will continue to treat with medication and see if it is able to be controlled. I am soooo nervous about the surgery and also if it will help her. I would love to hear from other moms who might have experience in this area. How did the surgery go for you?

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