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38Re: [Myotubular_Myopathy] XMTM

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  • robert.shapiro@JPMchase.com
    Apr 7, 2003
      Hi Jess and Jack,
      Breathing with a trach is much easier because you bypass the mouth and
      nose area which are very complicated parts of our bodies. However, with a
      trach you have to be careful of infection and you have to have lots of
      trach care. We change Jay Jay's trach once a week and we change his trach
      dressings (gauze around the trach area) twice a day. I think we do these
      things more often then necessary but he is doing well. The trach actually
      makes the airway a little smaller because the trach itself takes up room.
      A big advantage of the trach is that we can suction out secretions through
      the trach. When Jay Jay gets sick he is too weak to cough properly so we
      have to suction out his secretions. How does Jack eat? Do you feed him by
      mouth or through a G-Tube? Jay Jay can not swallow so he needs a G-tube.
      Again, before making any decisions you should talk to your pulmonologist
      and your ENT doctors to ask their advise. One thing I want to tell you is
      that Jay Jay is a great Kid and always gives us great joy. He has taught
      us what is important in life.
      Please feel free to stay in contact and ask any questions that you want.
      Bob Sherry and Jay Jay



      evil pixie
      <evilpixiecat@ To: Myotubular_Myopathy@yahoogroups.com
      yahoo.com> cc:
      Subject: Re: [Myotubular_Myopathy] XMTM
      04/05/03 12:49
      AM
      Please respond
      to
      Myotubular_Myo
      pathy








      Hi Bob,

      Wow your jay jay's dad. i have your story in a folder at home of your
      precious son.

      i didnt think he was 5 almost six. sounds like he is doing well.

      as replying to your email regarding a trach. does anybody know or in your
      experience when "one of our" kids gets trached, breathing it easier? as in
      if they were vented before hand do they come off for periods alot easier
      after a ttrach?

      I have figured our boys must have a degree of floppy airways, is it noted
      or known a trachy will help with breathing?

      I feel like i am in limbo as all i have read, at jacks age kids are either
      fully vented or dont require any support at his age. As he is on CPAP,
      constant. periods where tried off 4 months ago but he wasnt coping well and
      not gaining weight.

      I must go, i will keep in contact. we are finally moving into a house after
      being at ronald mac donald house for 7 months!!! once i am on the net i
      will write.
      take care Jess.









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      Hi Bob,


      Wow your jay jay's dad. i have your story in a folder at home of your
      precious son.


      i didnt think he was 5 almost six. sounds like he is doing well.


      as replying to your email regarding a trach. does anybody know or in your
      experience when "one of our" kids gets trached, breathing it easier? as in
      if they were vented before hand do they come off for periods alot easier
      after a ttrach?


      I have figured our boys must have a degree of floppy airways, is it noted
      or known a trachy will help with breathing?


      I feel like i am in limbo as all i have read, at jacks age kids are either
      fully vented or dont require any support at his age. As he is on CPAP,
      constant. periods where tried off 4 months ago but he wasnt coping well and
      not gaining weight.


      I must go, i will keep in contact. we are finally moving into a house after
      being at ronald mac donald house for 7 months!!! once i am on the net i
      will write.
      take care Jess.








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