Special Needs

Children with a G-tube?

Doctors at the Children's Hospital where DS is at now wants to perform surgery and put in a g-tube because DS does not suck or swallow. 

Does anyone have children with a g-tube?  What is your experience?  

Re: Children with a G-tube?

  • My son has had a g-tube since 3 days old but we didn't have a choice.  The mic-key button is really easy to use.  I'm sure they will keep doing therapy with your son and he will still learn how to eat but you have to make sure he is gaining weight until then.

    Does he have an ng-tube now?  It seems like a g-tube would be so much easier than an ng-tube but Drake never had one.  Surgery is never fun but this one is pretty common.

    Do you have any specific questions I can answer for you?

  • Yes, he has an ng-tube now.  I don't know what a mic-key is, what is that?

     

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  • The mic-key is a button that they put in the opening that you can open and close to attach the tubing.  It stays in place with a balloon that you fill after you insert it. Some doctors just leave the tubing but that seems so much harder to me.  That might be a good question for you to ask your doctors - when and if they plan on using a mic-key.

    The reason I say it seems so much easier than an ng-tube is that it little fingers aren't able to pull it out as easily.  We've had Drake home for 11 months now and the only time he got it out on his own was yesterday when he got the tubing caught under him while trying to get off the couch.  :)  It causes a few problems now that he is mobile but it is his only way to get nurishment so we have learned to deal with it.

    I suck at positng links but try this website.  

    https://www.mic-key.com/ 

  • Thank you so much.
  • My son has had a G-tube since he was 3 weeks old. He has congenital heart disease and nasal stenosis , so he is too tired to eat and he has trouble getting enough air in to swallow.  He's 11 weeks old now. I can't wat till he is big enough for the surgeon to put in a mic-key. He has already pulled out his long tube once since we've been home from the NICU.
  • Sorry I'm like a year late on this post - but my son has had a g-tube/mic-key button since he was only a few weeks old.  he is almost 5 months now.  We have had a good experience with it overall.  We still try to bottle feed him too though before we use the tube each time.  When he was little he would barely drink 15 mls, now he is drinking 100 mls sometimes!!!  The tube is not too hard to care for, just requires me to change the dressing around it once or twice a day.  We use an ointment to keep the stomach acids from hurting his skin around it.  If you have any questions at all - please page me!! 
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