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Re: [Myotubular_Myopathy] News about my son Jack

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  • connie guinn
    Hi, Jess. In response to your email, I must say that I have never heard of a trach causing anyone to become vent dependent. Lots of people have trachs and are
    Message 1 of 4 , May 10, 2003
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      Hi, Jess. In response to your email, I must say that I
      have never heard of a trach causing anyone to become
      vent dependent. Lots of people have trachs and are not
      on vents at all. All a trach does is provide a patent
      airway, making it easier to breath. As for our boys, a
      patent airway is not enough. The shallow breathing
      that you speak of, is also a threat- the danger being
      an inadequate O2 and CO2 exchange. Even if the O2
      level is normal, if the CO2 level is too high this can
      lead to irreversable brain damage or death. Using a
      vent does not guarantee dependence. Also, you can
      still be on CPAP with a trach. I must admit that I am
      unsure of what you mean by the problems associated
      with a trach. Can you describe these? I am also not
      sure of what damage from a vent there is that you
      speak of.
      --- evilpixiecat@... <evilpixiecat@...>
      wrote:
      >
      > Hi Everyone!
      > I hope all is well with your boys, yourself and your
      families.
      >
      > Jack is 8 months old and is CPAP dependant. Last
      week Jack was trail
      > of the CPAP and he lasted 20 minutes as he had
      copious amount of
      > secretions and was choking on them. They had to
      suction him
      > constantly.
      > Mark and I have decided to give Jack a trachy, It
      was a veru hard
      > and emotional decision to make...We know now it is
      needed.
      > We had the meeting with the doctors yesterday and we
      thought we
      > would have to fight them to give him a trachy, but
      they had changed
      > there minds after his trail off the CPAP.
      >
      > They have finally started him on meds for his
      secretions and in the
      > next few days they will trail him few more times off
      the CPAP to see
      > if it makes a big enough diffrence to postpone the
      trachy.
      > We dont hold out much hope it will make a big
      difference.
      > I am not sure i like all the side effects that can
      come with them.
      >
      > So Jack will have a Trachy soon.
      > I have one important Question to ask everyone.
      >
      > Does anyone know of any boys who have become
      Ventilator Dependant
      > Since or as a result of having a trachy?
      > Although Jack's doctors have never seen a boy with
      XMTM that
      > required respiratory support. They say from a broad
      spectrum
      > myopathy rule, They said they wouldnt be surprised
      if Jack becomes
      > Ventilated full time even though Jacks CPAP setting
      is a 4.
      >
      > They are also talking about if Jack can breath on
      his own during the
      > day and if he requires CPAP of a night, They will
      want to Ventilate
      > him as with being on CPAP they only take small
      swallow breaths and
      > they think that with the use of a Ventilator will
      help expand his
      > lungs to a bigger volume so when his rib cage starts
      to firm up-it
      > will do so at a bigger volume to help him take
      bigger spontanous
      > breathes.
      > Has anyone heard of this before? It makes sense.. I
      am just a little
      > concerned with the damage vents can do.
      >
      > Take care Jess
      > www.caringbridge.org/oceania/jack
      >
      >


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    • robert.shapiro@JPMchase.com
      Hi Jess, My son has a trach and has been on a vent for 5 1/2 years. During the day (when he is not sick) he is off the vent and he has a Passey Muir valve(it
      Message 2 of 4 , May 12, 2003
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        Hi Jess,
        My son has a trach and has been on a vent for 5 1/2 years. During the
        day (when he is not sick) he is off the vent and he has a Passey Muir
        valve(it enables him to speak and protects the trach opening. With a trach
        the air you exhale goes out through the trach so it doesn't pass the vocal
        chords so you need to block the trach from exhaling if you want to speak.
        There is no doubt in my mind that the trach has saved Jay Jays life. With a
        trach you have to be very careful of infections. Jay Jay has had none.
        Also trach care is very important. we change Jay Jays dressings at least
        once a day and most of the time twice a day. We also change his trach once
        a week. These are things that you will have to learn but believe me it is
        worth it. If Jack is using all his energy to breath then he will be tired
        all the time. With a vent he can use his energy for more important things
        like learning and being mischievous. Jay Jay has not become more vent
        dependent and maybe if he gets ready one day he won't need the vent any
        more. The trach is also very good for handling secretions. We use the
        Ballard in line suction catheter to suction Jay Jays trach. This is
        another skill you will become adept at. I remember how hard it was for my
        wife and myself to agree to Jay Jays trach and G-tube but looking back it
        was the only decision that was possible for us. Every child is different
        and every family must decide for themselves the best thing to do. Please
        feel free to ask any questions and share anything with us.
        Good Luck,
        Bob Sherry and Jay Jay



        "Jessica"
        <evilpixiecat@ To: Myotubular_Myopathy@yahoogroups.com
        yahoo.com> cc:
        Subject: [Myotubular_Myopathy] News about my son Jack
        05/10/03 06:07
        AM
        Please respond
        to
        Myotubular_Myo
        pathy







        Hi Everyone!
        I hope all is well with your boys, yourself and your families.

        Jack is 8 months old and is CPAP dependant. Last week Jack was trail
        of the CPAP and he lasted 20 minutes as he had copious amount of
        secretions and was choking on them. They had to suction him
        constantly.
        Mark and I have decided to give Jack a trachy, It was a veru hard
        and emotional decision to make...We know now it is needed.
        We had the meeting with the doctors yesterday and we thought we
        would have to fight them to give him a trachy, but they had changed
        there minds after his trail off the CPAP.

        They have finally started him on meds for his secretions and in the
        next few days they will trail him few more times off the CPAP to see
        if it makes a big enough diffrence to postpone the trachy.
        We dont hold out much hope it will make a big difference.
        I am not sure i like all the side effects that can come with them.

        So Jack will have a Trachy soon.
        I have one important Question to ask everyone.

        Does anyone know of any boys who have become Ventilator Dependant
        Since or as a result of having a trachy?
        Although Jack's doctors have never seen a boy with XMTM that
        required respiratory support. They say from a broad spectrum
        myopathy rule, They said they wouldnt be surprised if Jack becomes
        Ventilated full time even though Jacks CPAP setting is a 4.

        They are also talking about if Jack can breath on his own during the
        day and if he requires CPAP of a night, They will want to Ventilate
        him as with being on CPAP they only take small swallow breaths and
        they think that with the use of a Ventilator will help expand his
        lungs to a bigger volume so when his rib cage starts to firm up-it
        will do so at a bigger volume to help him take bigger spontanous
        breathes.
        Has anyone heard of this before? It makes sense.. I am just a little
        concerned with the damage vents can do.

        Take care Jess
        www.caringbridge.org/oceania/jack



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