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Re: [Myotubular_Myopathy] XMTM

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  • evil pixie
    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
    Message 1 of 5 , Apr 4, 2003
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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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    • robert.shapiro@JPMchase.com
      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,
      Message 2 of 5 , Apr 7, 2003
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        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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      • connie guinn
        Jessica, Hello! My name is Connie. I have a son, Benjamin, who was born with MTMX. He is 7 months old, trached, and has been on room air since he was born,
        Message 3 of 5 , Apr 21, 2003
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          Jessica,
          Hello! My name is Connie.
          I have a son, Benjamin, who was born with MTMX. He is
          7 months old, trached, and has been on room air since
          he was born, and has been on CPAP. It seems as if we
          have a lot in common and will be able to exchange lots
          of experiences (when there's time!) Benjamin got his
          trach when he was 1 1/2 mos old. I believe that the
          trach is so much easier on them for several reasons:
          1) there is less trauma to thier tissues 2) there is
          less fear about it coming out because, if it does fall
          out, it can be replaced easily (by anyone) whereas
          only a physician or nurse practitioner can replace an
          endotracheal tube 3) with an endotracheal tube, you
          will likely never get the opportunity to fully hear
          your son's voice the way you can with a tracheotomy.
          It's no guarantee that you will, but the likelyhood is
          greater. Also, please know that a tracheotomy is
          not a permanent thing- if warranted, it can be taken
          out (called decanulation), and the stoma on the neck
          will heal up and form a small scar (it kinda looks
          like a smiley face). It certaily can't hurt- I mean,
          if your son is needing some sort of pulmonary
          support(regardless of what kind), then this is
          definitely an option worth checking out. How much
          did your son weigh when he was born? What was his
          length? Was he full term? Did you have excessive
          amniotic fluid during your pregnancy? What is his
          height and weight now? Do you have any other
          children? Benjamin was born on Sept 12, 2002 in
          Houston, Tx. he weighed 7lbs 5.5oz and was 20&1/2
          inches long. He was born at exactly 39 weeks
          gestation. I did have excessive fluid during my
          pregnancy- to the point that the last five days before
          he was born, he was continually turning from the 'head
          up' position to the 'head down' position (as confirmed
          by ultrasound),yet, I had no knowledge that he was
          turning like that except for the ultrasound images!
          Now, Benjamin is 31 inches long and weighs over 21
          pounds- he is enormous! I do have another child, a
          daughter, LeeAnn. Write when you can. I understand
          the time restraints. I, myself, am writing this from
          the Ronald McDonald House. Take care.
          Congratulations on your wonderful, amazing son. I am
          so excited to find someone else who has an infant with
          MTMX! The information everyone with older boys
          supplies is helpful, but it can be very hard to
          vividly remember back to these early days. i hope we
          both can benefit from one another.

          -Connie
          --- evilpixiecat <evilpixiecat@...> wrote:
          > I have a son who was born 8 weeks prem who has been
          > formally
          > diagnosed with XMTM, they have found the mutation
          > and our genetisist
          > says there is only one other boy with Jack's
          > mutation, as there is
          > around 200 hundred different mutations that have
          > been found.
          > apparently his mutation is usually associated with
          > the severest form,
          > however the other boy in europe was aged 16 in 1997
          > when this paper
          > was written.
          > We all know that each child is different and they
          > improve
          > differently, but i am desperatley seeking other
          > parents with children
          > as special as ours.
          > I am from Australia and i just started to get in
          > contact with the
          > Scoggins and the Frase's. but as we are all so busy
          > with our
          > beautiful boys contact is slow in coming.
          >
          > My son Jack is 6 months old, but only just 4 months
          > corrected. he was
          > ventilated at birth and remained vented for 5 weeks,
          > then he was put
          > on CPAP. He eventually was weaned down to CPAP of 5.
          > Since birth he
          > has only been on air, apart from suctioning etc.
          > we tried him off the CPAP for 1 1/2 morning and
          > eveing. but he failed
          > to gain weight so we stopped.
          > His Improvements have been great his arms and legs
          > are getting
          > stronger and he reaches out for toys and can hold
          > his head
          > momentarily, and is improving in this.
          > However he swallow isnt productive. he can cough and
          > bring up his
          > secretions to be suctions. I would says his eyes are
          > unaffected apart
          > from some occassional partial eye closure some
          > nights.
          > And he hasnt been 'trached. we are hoping to avoid
          > it. but if jack
          > gets to the point of not developing from having the
          > nasal phar tube
          > in and he seems not to be getting off the CPAP for
          > extended Periods
          > we will trach him.
          > i would like to know if a trach will help come off
          > the CPAP as in
          > making the airway bigger.
          >
          > I have so many questions, so few people in contact
          > with.
          > I hope i can speak to any of you.
          > Jessica
          >
          >
          >


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