G-tubes

Kimberly - posted on 01/14/2009 ( 9 moms have responded )

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Firstly, I want to thank all of the moms who have posted their introductions!! It's so nice to meet you all and hear a little bit about you and your families.

Maddy is 9 months old and had an NG tube placed at 11 days due to heart failure. (She's had 2 heart surgeries and is doing GREAT now) She had the NG tube until about 3 months ago when we had a g-tube (Mic-Key button) placed. She sees a pediatric nutritionist and speech therapist who are working with us to help her reduce her need for the g-tube.

Do any of you have kids w/ g-tubes and if so, how are they doing?

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Denise - posted on 05/27/2009

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My adopted daughter Melanie had a g-tube placed when she was about 5 months old. She had her last tube feed in January, 2006, when she was almost 4 years old and we removed the tube about 3 months later. She is doing absolutely wonderful! In fact, she switched daycares about 2 months after her last tube feed and the first comment from the new daycare was, "she's one of our best eaters and always asks for seconds!"



Although her food preferences are a little odd to the rest of us - she does not drink any juices or milk, pretty much only water, and would eat strictly rice and noodles (preferably plain spaghetti, no butter, no sauce) if she could, she likes most vegetables once she agrees to taste them and will occasionally have a day when she wants nothing but meat! Given a choice of two foods, she will usually choose the healthier option (rye bread over white, chicken over beef, vegetables over candy or cookies). In fact, she is only now beginning to develop a taste for sweets at all. She would say she wanted candy or cookies because the other kids had them, but will usually take one bite and throw the rest away. She is a "failure to thrive" baby, who is definitely thriving!

Jamie - posted on 05/23/2009

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My son had alot of granulation tissue that wouldn't heal well, and his surgeon prescribed sulcrate cream for him, which has really improved the site. I also put the onesie shirts on him when he used to play with the button, so it prevented him from pulling at it. Now he doesn't really bother with it anymore because he's so used to it.

Thora - posted on 04/15/2009

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Hi there! My daughter, Chaya, just turned 2 in December and has had her Gtube since she was about 7 months old. Before that it was NG tube since birth. She has made much progress recently with her eating, but still does not eat enough to maintain her weight, let alone gain it. She is only on two bolus feeds a day now, though. Our major issue with it is that Chaya has taken to playing with her button which is increasing the amount of granulation tissue. It looks pretty bad, but her surgeon says that she can fix it when we remove the button.



 



I have to say, though, that sometimes it's very disheartening for me to know that she can't eat enough to maintain her weight. It breaks my heart. I don't think it's her eating habits, though. Chaya eats more in a day than most toddlers do, but she still doesn't gain weight on her own. For example: she can eat half of a personal size pizza in one meal. She has tested negative for Celiac and some other conditions, so we (and the doctors) are stumped. I hope we can figure it out soon.

Kristin - posted on 01/30/2009

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Hi Kimberly! I have a Maddie (Madison) who is 9 months too.haha, 4/11/08 =)

I dont know much about The g-tube, Maddie had one in the whole time she was in the NICU for about 16 days, she had no suck/swallow reflex.

We have been blessed that she is very healthy with no cardiac issues. She is however deaf in both ears and wears hearing aids. We found out when she was about 8 weeks old that her hearing loss was permenant and not related to DS. She also has congenital hypothyroidism which they believe is related to her hearing loss. ( Possibly a whole other genetic issue called Pendreds Syndrome). Just recently she has started aspirating when she eats which has caused fluid to accumulate in her lungs. So that is a new issue.

I am glad to hear your Maddy is doing much better after her heart operations!!!! It is such a blessing when they are happy and healthy =)

Kristine - posted on 01/29/2009

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My daughter also had heart problems and for some reason they wouldn't let her leave the hospital until she had her g-tube put in at 5 weeks old.  They did a fundoplication (sp?) at the same time, which is creating a nipple valve at the entrance to the stomach so food won't go up.  It was nice then, but now she still can't throw up at 4 1/2.   She didn't get it taken out until she was 3, partly because complications of heart surgery made her take longer to strengthen, and she just took a long time to learn to drink by mouth.  They were so cautious about taking it out - even when she was finally drinking enough to suit them they waited at least 6 months before removing it.  She didn't have very much problem with granulation tissue but soon after they took it out she got a bad cold and the cough made the hole open up and leak.  They were afraid they were going to have to do surgery, but antibiotics finally made it all go away.  She still has a terrible lumpy scar there though.  Every child is so different - I know it seems so complicated now, but she'll probably be without it in no time.

Jamie - posted on 01/28/2009

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I just got Drake's glasses from a local eyeglass store. I find that they always want to slip down his nose though, since he doesn't have a bridge to his nose, and they seem a bit too heavy for his size i think. He only wears them for about 10 mins at a time anyway though before he throws them off lol. At least now he's trying to put them back on after he take them off though. I've been thinking about getting a different pair for him too that will be lighter, and fit better for his face. He'll be seeing the optometrist again by this summer too.

Kimberly - posted on 01/28/2009

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I know what you mean Jamie... my daughter gets the granulation tissue too.  I don't think that her's is as bad as your little guy's, though.  I hope that your little one won't need the g-tube for much longer.  We are working w/ a nutritionsit to reduce Maddy's need for the g-tube.. so fingers crossed it will be able to come out in the near future.  I see that Drake wears glasses too.  Maddy got her's a few months ago.  Where did you get his from?  Are you happy with them?  Maddy will need new glasses this summer and I was thinking about ordering her some from Specs4us.com.



 



 

Jamie - posted on 01/27/2009

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Hi, i have a 2 year old son, Drake, who has had a g-tube now for about 7 months, and had an ng tube before that since he was about 9 months old. My son was in and out of the hospital all winter season last year with constant chest colds that would drop his oxygen levels. We were in the hospital just as much as we were at home, about every 2 weeks. My son needed the ng tube because he was aspirating his milk, and it was making his chest worse.  It didn't help as much as his pediatrician had hoped, and it got to the point that she was worried he would get a chronic lung infection if she didn't have a g- tube put in. The g- tube has definitely helped because we haven't had to go to the hospital for oxygen since last june, but his skin around the g- tube site doesn't seem to take well to the g- tube.  He keeps getting the hypergranulation tissue growing back, and skin infections around it, so he needs antibiotics every now and then for it. The surgeon has said that it's rare, but his body just doesn't react well with it. I clean it every day, and have to put cream around the area, and it seems to hurt him every time i do. I'm still glad he has the g- tube though because the positives have definitely outweighed the negatives, but i worry that his body will never adjust to it, and i have no idea how long he will need this tube for.

Michelle - posted on 01/16/2009

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Hi, I have a daughter who will be 19 next month.   She had a G tube placed when she was about a month old.   She was premature and has cerebral palsy although fairly mildly.   She did have a lot of issues when a baby though.  I just wanted to let you know that she had the g-tube until about 18 months of age and then it was removed.  She is a very healthy happy 19 yr old girl.   There is hope that your daughter may not need it and will thrive later on without it.   I hope things continue to go well for you.

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