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Re: G-J tube issues

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  • odomit
    Yes we had a GJ Tube for 2 years. It got to the point that it was getting clogged every week. It is mostly difficult because we had to go to hospital to get
    Message 1 of 20 , Apr 9, 2008
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      Yes we had a GJ Tube for 2 years. It got to the point that it was
      getting clogged every week. It is mostly difficult because we had to
      go to hospital to get it changed. Holding her down was probably the
      worst thing. She got a Fundo and her tube was changed to a G tube
      only. Much BETTER !
      It can be changed at home. One of our nurses can change it an she
      does not even realize it.
      Do not get discourages.
      We were careful to flush with warm water every 4 hours(I can't say if
      it helped or not). The J part of the tube is inserted through the G
      tube into the jajunium (not spelled correctly, the tube is smaller
      than the G allows it to clog more easily.
      Raegan 3 yrs
      MTM (Not X-linked)


      ﷯﷯--- In Myotubular_Myopathy@yahoogroups.com, "bv_mixednuts"
      <bv_mixednuts@...> wrote:﷯﷯
      >﷯﷯
      > I was wondering how many of your kiddo's have G-J tubes? 
      Christopher﷯﷯
      > has one and since he's been home we've had the entire tube replaced﷯﷯
      > which is painful for him and frustrating for us.  I've been told
      that﷯﷯
      > most kids eventually can have feeds right into their G tube port but﷯﷯
      > Christopher does not tolerate anything thicker then water in his G﷯﷯
      > without constant vomiting.  So if your kiddo has their feeds only in﷯﷯
      > the J how long do they last before you have them changed out.  Also﷯﷯
      > have any of you graduated from J-tube feeds to G-tube?﷯﷯
      > Thank you,﷯﷯
      > Virginia﷯﷯
      >﷯﷯
    • odomit
      Our little darling had a GJ for 2 years until we got the Fundo surgery. She now only has a G. The G is bigger and does not get clogged like the smaller J. We
      Message 2 of 20 , Apr 10, 2008
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        Our little darling had a GJ for 2 years until we got the Fundo surgery.
        She now only has a G. The G is bigger and does not get clogged like
        the smaller J. We were replacing hers every week there at the end.
        The hospital would suggest different things to us and we would try it
        all but nothing worked for us. Just her formula would clog the tube.
        Stay calm and just take it one day at a time. He will not have to
        always have the J.
        We tried the Unclog stuff you put in and let it sit for 5 min. then
        flush it through. DID NOT WORK. They doctors accused us of not
        flushing it properly but we were so diligent in our efforts that we did
        everything they said. So we just smiled and kept begging for more
        information. Since Raegan got her fundo she is in a lot less pain and
        this last year she has begin to really learn so much. She is even
        beginning to speak (Thank you God) We are so blessed.


        --- In Myotubular_Myopathy@yahoogroups.com, "bv_mixednuts"
        <bv_mixednuts@...> wrote:
        >
        > I was wondering how many of your kiddo's have G-J tubes? Christopher
        > has one and since he's been home we've had the entire tube replaced
        > which is painful for him and frustrating for us. I've been told that
        > most kids eventually can have feeds right into their G tube port but
        > Christopher does not tolerate anything thicker then water in his G
        > without constant vomiting. So if your kiddo has their feeds only in
        > the J how long do they last before you have them changed out. Also
        > have any of you graduated from J-tube feeds to G-tube?
        > Thank you,
        > Virginia
        >
      • Abbie harrison
        Odomit, How old is Raegan. I have a two and a half year old girl with a mickey and was just curious. Abbie Howeth odomit wrote: Our little
        Message 3 of 20 , May 16, 2008
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          Odomit,
          How old is Raegan.  I have a two and a half year old girl with a mickey and was just curious. Abbie Howeth

          odomit <odomit@...> wrote:
          Our little darling had a GJ for 2 years until we got the Fundo surgery.
          She now only has a G. The G is bigger and does not get clogged like
          the smaller J. We were replacing hers every week there at the end.
          The hospital would suggest different things to us and we would try it
          all but nothing worked for us. Just her formula would clog the tube.
          Stay calm and just take it one day at a time. He will not have to
          always have the J.
          We tried the Unclog stuff you put in and let it sit for 5 min. then
          flush it through. DID NOT WORK. They doctors accused us of not
          flushing it properly but we were so diligent in our efforts that we did
          everything they said. So we just smiled and kept begging for more
          information. Since Raegan got her fundo she is in a lot less pain and
          this last year she has begin to really learn so much. She is even
          beginning to speak (Thank you God) We are so blessed.

          --- In Myotubular_Myopathy @yahoogroups. com, "bv_mixednuts"
          <bv_mixednuts@ ...> wrote:
          >
          > I was wondering how many of your kiddo's have G-J tubes? Christopher
          > has one and since he's been home we've had the entire tube replaced
          > which is painful for him and frustrating for us. I've been told that
          > most kids eventually can have feeds right into their G tube port but
          > Christopher does not tolerate anything thicker then water in his G
          > without constant vomiting. So if your kiddo has their feeds only in
          > the J how long do they last before you have them changed out. Also
          > have any of you graduated from J-tube feeds to G-tube?
          > Thank you,
          > Virginia
          >


        • rachel wriglry
          hiya my son marconi had his g tube done in march this year hes 3 yrs old now my other son regan is 5 and he too has to have a gtube as hes not eating eough and
          Message 4 of 20 , May 16, 2008
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            hiya my son marconi had his g tube done in march this year hes 3 yrs old now my other son regan is 5 and he too has to have a gtube as hes not eating eough and takes hi a very long to eat so fingers crossed hos op goes ok

            --- On Fri, 16/5/08, Abbie harrison <abbiesharrison@...> wrote:
            From: Abbie harrison <abbiesharrison@...>
            Subject: Re: [Myotubular_Myopathy] Re: G-J tube issues
            To: Myotubular_Myopathy@yahoogroups.com
            Date: Friday, 16 May, 2008, 1:46 PM

            Odomit,
            How old is Raegan.  I have a two and a half year old girl with a mickey and was just curious. Abbie Howeth

            odomit <odomit@yahoo. com> wrote:
            Our little darling had a GJ for 2 years until we got the Fundo surgery.
            She now only has a G. The G is bigger and does not get clogged like
            the smaller J. We were replacing hers every week there at the end.
            The hospital would suggest different things to us and we would try it
            all but nothing worked for us. Just her formula would clog the tube.
            Stay calm and just take it one day at a time. He will not have to
            always have the J.
            We tried the Unclog stuff you put in and let it sit for 5 min. then
            flush it through. DID NOT WORK. They doctors accused us of not
            flushing it properly but we were so diligent in our efforts that we did
            everything they said. So we just smiled and kept begging for more
            information. Since Raegan got her fundo she is in a lot less pain and
            this last year she has begin to really learn so much. She is even
            beginning to speak (Thank you God) We are so blessed.

            --- In Myotubular_Myopathy @yahoogroups. com, "bv_mixednuts"
            <bv_mixednuts@ ...> wrote:
            >
            > I was wondering how many of your kiddo's have G-J tubes? Christopher
            > has one and since he's been home we've had the entire tube replaced
            > which is painful for him and frustrating for us. I've been told that
            > most kids eventually can have feeds right into their G tube port but
            > Christopher does not tolerate anything thicker then water in his G
            > without constant vomiting. So if your kiddo has their feeds only in
            > the J how long do they last before you have them changed out. Also
            > have any of you graduated from J-tube feeds to G-tube?
            > Thank you,
            > Virginia
            >




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