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G tube Please help!

preggersINschool25preggersINschool25 member
in Special Needs
I'm 99 percent positive that we will be getting a g tube. I have been on feedingtubeawareness.org and I have their list of questions to ask the doctor.

Is there anything else that you wish you would have known or asked before getting the tube? Are there any other good websites?

I usually do a lot of research before doctors appointments, and for some reason I still feel really unprepared. We meet with the G.I for the first time on Tuesday. Our developmental pedi and dietician are the ones recommending the g tube based on his consumption. We are at 17oz of pediasure a day on average. With barely any food. Just to give a short background.


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Re: G tube Please help!

  • adge1119adge1119

    it's scary at first but honestly it's not bad at all.  try not to think too much about the "bad" stuff you read...remember every child is different.  you will learn as you go about it and what is best for your son.  the only thing i can say with our experience is that we have more instances of vomiting now than we did before.  but this is pretty much because now he actually has a full belly.  i feel that the g-tube has given us a lot of freedom in many aspects. 

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  • twoasone1twoasone1 member

    I agree.  It was a bit scary at first and I felt overwhelmed with it all in the beginning.  But now that we are 2.5 years in with my sons g-tube, it is really easy to deal with.  Like everything, there is a learning curve.  I think it is great that you are learning as much as you can now.  When my son got his, we didn't have much warning so I didn't get a chance to research it like I would have liked to.  Do you know if he will be bolused or pump fed?  My son started out being bolused but has recently switched to pump feedings due to declining health with an undiagnosed disease/disorder.  

    Feeding Tube Awareness site is awesome.  I get on their Facebook page a lot too.  Hope all goes well and I would be happy to answer any questions if they should arise! 

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  • lvnbraveslvnbraves member

    One thing I wish I had focused on before our LO got his feeding tube was what the feeding plan would be.  We never talked about this and it happened, very fast, in the hospital and I never thought about the repercussions.

    In our case, they tried to start him at a ridiculous amount.  He was drinking about what your LO is, maybe a little less as he was also eating purees and they started him at like 20 ounces over night and a couple of bolus feeds during the day.  He wound up dependent on the g-tube and we've spent months in therapy trying to teach him to eat.  He was 7 months old when he got the tube.

    Make sure you know what the plan is, are comfortable with it and that it seems to make sense for your little one.

    I don't know all of your story, have they checked for allergies or any eosinophilic disorders?  We found out when we had the g-tube placed that our little one has eosinophilic esophagitus, which is an autoimmune allergic reaction.  We had no indication at all that he had allergies.

    Good luck and the g-tube, despite it's dramas, was an incredible blessing. 

    Baby Birthday Ticker Ticker Emergency ileostomy 11/28/10, CF dx on 12/3/10 and ileostomy takedown 1/24/11, feeding tube placed 7/1/11...still going strong! Little one lost 5w5d, 5/27/2012. CP 8/26/2012
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  • fleurdlisfleurdlis member

    Will DS or DD be getting a Nissen and Gtube, or just the GTube?

     I would ask what to do in the event granulation tissue appears around the tube site.  Are you to come in, or will they send you home with silver nitrate sticks.  Also, make sure they give you a prescription for an extra tube in the event DS or DD pulls it out.  Many hospitals do not carry all sizes.  

    The best advice I got was to talk with wound care department folks about the doctor doing the procedure.  I learned that the doctor originally scheduled to do DD's surgery did not have good outcomes and was known around hospital for patients having issues with their tubes.  We waited for a better doctor and daughter has not had issues. 

     

     

     

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  • zoeyandsummersmomzoeyandsummersmom member

    Also, make sure you know who the lead doctor is going to be and who you can contact if there is an issue with the tube. Also, try to find out a head of time which hospitals are equipped to help you after the surgery. We had an issue a few days after we got home from surgery where the mic-key came out at 2am and the hospital 2 blocks away wanted us to sit in the waiting room for an hour.  

    Also, prior to surgery, talk to any other specialists your son sees. Do they want any blood tests/MRI scans while your son is under for the surgery? We had endo tests done then.  

    Find out prior if he is getting a mic-key or an AMT mini. For a mic-key, visit tubiefriends.org and for a mini visit - minibuddy.org. We use our tubiefriend to show grandparents and others how to use the mic-key button etc.

    Order extra kits with spare g-tubes. I keep a kit in my car at all times. 

    We had DD's g-tube surgery on a Friday and we were not released until Monday morning, so plan accordingly.

     

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