Removal of 5yr old's feeding tube ??

anonymous

New member
My 5 yr old grandson w/cf has had a g-tube for about 3 yrs.
He is now going great with oral feedings and gets only 6 oz. of tube feeding per day.
The decision will have to be made whether to leave the tube in ,just in case,or have it removed.
It would be a great back up,but it would also be great to not have to wear a shirt to the beach or be self conscious in front of others.
Anyone have any experience or thoughts on the subject?
 

Emily65Roses

New member
He's only 5, and he's self conscious about the feeding tube? I'd say if he's only 5, leave it in, because why would a 5 year old care? I don't understand why at his age, he's wearing a shirt to the beach to hide it.
 

anonymous

New member
He's not at all self conscious about it at this point.
Kids have asked him what the Mic-Key button is,and
he usually says it's my Mic-key button,or else my other belly button..He is SO cute !!!
I think the concern is more for when he gets older.
 

Emily65Roses

New member
Ahhh okay. Well if he's taught not to be self conscious about it now... just to be honest as to what it is -- chances are he won't care that much when he gets older. My scars, my port, all of that stuff, none of it bothers me. I wear a two piece at the beach and my port is incredibly visible, and I don't care. So he may not care too much, or at all.

As for whether or not to remove it... I really don't know. I've never had a G tube, just my port. And I wouldn't dream of removing my port, because I use it a few times a year, and it's way worth it to me. I imagine you'll want to look at the chances of him needing it again in the future. I don't know the deal with G tubes, do they need to be replaced like ports? If so, you might as well get rid of it, because by the next time he needs it, he may be in his teens or even older. But if not, you may want to keep it so that he doesn't have to have another surgery for placement. As it is, when he gets older, he'll be more likely to need the G tube again, or a port. So, he may as well learn to live with it. Not the most fun things in the world, but as a CFer, we get used to them. <img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Thanks so much...Your experience is very helpful...put things in perspective.
The body image issue seems way less important than the struggle with nutrition and growth !!
 

anonymous

New member
I will say that Emily has a good attitude. I wonder how many of us others can honestly say we're the same way.
When I have PICC lines in, I wear long sleeves. I try to hide my 'clubbed' fingernails in family pictures, etc. It would probably be somewhat liberating not to be so modest--I'll work on it.<img src="i/expressions/face-icon-small-blush.gif" border="0">
Thanks for a 'real' point of view!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
Hey, some people just have a harder time with it. But if you can make yourself not care about it... it sure is liberating. Hehe. Glad I could help spread a good point of view, or whatever it is that I did. Haha.
 
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