To have G-Tube, or to not have G-tube?

[anonymous]

Hi, my daughter who just turned three is stuck at the 26 lb mark. We are now at the point where we are seriously considering the feeding tube. I have heard/read pros and cons to the tube. I was wondering what some of the parents think about a tube in a child this young. I know it is hard for any young child to be in the hospital, and I have had my share of seeing my baby in pain. But from your observations, what are the best and worst things that the child has to go through with the tube? I know that in the long run it will be better for her, weight gaining wise. What is the maintance like, from a parent's stand point as well as a childs. I could really use some personal stories before we choose to do this. Any comments would be greatly appreciated. Thanks <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

whoops, didn't mean to post it twice, sorry.

 

[ClashPunk82]

Well I am 22 and not a parent but I do have a g-tube. Now for me it was a decison I made. I asked for it because I just kept losing and couldn't gain a thing. I was down to 88 pounds for quite sometime. Now I can' say what's best for a 3 year old but I found that even though it wasn't great to have a tube in your stomach it was the best decision I made. I am now back to 100 pounds and I keep on gaining. The procedure is very simple. Takes about 10 minutes or so. In adults they can do it without putting you under but I am sure it would be different with a 3 year old! <img src="i/expressions/face-icon-small-happy.gif" border="0"> The actual tube is a little t-bar against the stomach and has about 6 inches of tube hanging from that so you would have to tape it down. And with a 3 year old you would have to make sure they don't pull it out. For about a few days after there was a little pain but they have you on morphine for this. After a week you can shower and just use soap and water to clean the area.. I also use stoma powder to keep it dry. You also have to make sure you turn it everyday just to keep it loose and make sure you don't get irritation from leaving it in one spot. After 4-6 months you will get the button which is called a Micky. I am not sure if the same is with a 3 year old or not but most likely it is. Obviously there is some discomfort for a little while but after a few weeks for me the discomfort was gone and now I don't feel it one bit. I think it is the best way to go. It's tough though having to have it so young but if it will help with the weight then I say try it. Also after I gained the weiight back I felt great. I had more energy I wasn't so tired I felt good enough to go out and do things. I think without the nutrition part your body just can't do it. I hope this helps some!! <img src="i/expressions/heart.gif" border="0">

Nicole 22 CF

And Good luck with everything!!

 

[anonymous]

I am 20 years old and I had a g-tube put in me when i was 3 years old. It was not my decision obviously but it was my docs decision for the best interest in me. To be quite honest, when i was growing up i was very self conscious of this and it really pissed me off to have it. But i keep learning more and more about it and without it i would have died. It truely saved my life. So if your daughter is stuck at a weight that is just not good for her age i would suggest you think about the g-tube. It is a big saviour and it helps a lot. It's painless but it does good for the body.
Hope my advice will help you in the decision you are going to make.
Ashley 20 w/ Cf

 

[shamrock]

I'm 17 and have had the tube since I was 5. I had a nasogastric tube before that. I have major appetite problems and so the tube is a lifesaver. I take occaisional nights off like new years or if I stay over at a friends house or somthing. I think that you should consider it.
I know somebody who ate everything but the weight just wouldnt come on. It did great things for her and about three years later she didnt need it anymore so they removed it!
Hope this helps ;o