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Re: [Myotubular_Myopathy] Marconis ill

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  • Kimberly Kowalski
    i hope marconi is feeling better. this winter sam has been fighting virus after virus having TONS of secretions, sometimes very stubborn ones that are
    Message 1 of 11 , Feb 1, 2007
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      i hope marconi is feeling better. this winter sam has
      been fighting virus after virus having TONS of
      secretions, sometimes very stubborn ones that are
      difficult to break up and get out. we have been using
      nubulizers of hypertonic saline - 7% solution - with
      him and it has worked amazingly well.

      hope he is on the up and up soon!
      k
      --- Scott & Betsy Grant <scottnbets@...> wrote:

      > I just heard this from another mom, not MTM, but
      > that her son was prescribed
      > mucinex to help loosen up thick mucous, and it
      > really helped a lot, I don't
      > know anything else about this medication.
      > Betsy
      >
      >
      > On 1/30/07, patsarah2006 <patsarah@...>
      > wrote:
      > >
      > > Rachel,
      > > When Adam's very congested in the chest we put him
      > to sleep in his car
      > > seat. We put it in his room with pillows around or
      > tie it to his
      > > dresser. You could strap him in in a slightly
      > reclined position. This
      > > helps him breathe easier. Good luck. I hope he
      > gets better soon.
      > > Sarah
      > >
      > >
      > >
      >




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    • Sheallyn
      hello Kim, I see you have had quite a few replies about your little man but I was wondering if Marconis gets Glycopyrolate at all? Kaden gets .38ml s of this 3
      Message 2 of 11 , Feb 2, 2007
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        hello Kim, I see you have had quite a few replies about your little
        man but I was wondering if Marconis gets Glycopyrolate at all? Kaden
        gets .38ml's of this 3 times every 24 hours and it really helps him
        alot. He still has secretions of course but it helps to manage them
        and depending on the child's needs it will make them thicker or
        thinner. In Kaden's case it helps to thin them so that we can suciotn
        him more easily.

        Chest physio is also done every 4 hours, Kaden is also turned every 2
        hours 24 hours a day. Side to side and on his back as well (only if
        supervised) to give him some time to learn to breath well while on his
        back.

        thinking of you both and hoping your son gets well soon!!


        Sheallyn & Kaden
      • rachel_wrigley
        just letting u all please pray for marconi hes ill at the moment and we want to keep out of hospital we have started his antibitics up he seems a little better
        Message 3 of 11 , Oct 16, 2007
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          just letting u all please pray for marconi hes ill at the moment and we
          want to keep out of hospital we have started his antibitics up he seems
          a little better today we suctioning him at least 5 times a day before
          his feeds and esp bedtime and first thing in the morning he still want
          to play bless him his sats are good and his his colour is too the
          little man woke up early last night wanting to play didnt go bk to
          sleep till 430am ill keep u all updated on marconi
          thanks everyone for reading
          take care
          Rachel
        • Spampinato, Rosemary
          I ll always count on deep nasal suction when the twins are really sick. Marconi is in my prayers - you are too! ________________________________ From:
          Message 4 of 11 , Oct 16, 2007
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            I'll always count on deep nasal suction when the twins are really sick. Marconi is in my prayers - you are too!


            From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of rachel_wrigley
            Sent: Tuesday, October 16, 2007 10:20 AM
            To: Myotubular_Myopathy@yahoogroups.com
            Subject: [Myotubular_Myopathy] marconis ill

            just letting u all please pray for marconi hes ill at the moment and we
            want to keep out of hospital we have started his antibitics up he seems
            a little better today we suctioning him at least 5 times a day before
            his feeds and esp bedtime and first thing in the morning he still want
            to play bless him his sats are good and his his colour is too the
            little man woke up early last night wanting to play didnt go bk to
            sleep till 430am ill keep u all updated on marconi
            thanks everyone for reading
            take care
            Rachel

          • Sheallyn
            Just read that Marconis is not feeling well .. he is in our prayers and I really hope he gets better quickly! Has he been back to see his Doc since this
            Message 5 of 11 , Oct 16, 2007
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              Just read that Marconis is not feeling well .. he is in our prayers
              and I really hope he gets better quickly! Has he been back to see his
              Doc since this started? I know you did take him recently but thought I
              would ask anyway ..


              get better soon little man, were rootin for ya! *big hugs*


              Sheallyn & Kaden
            • Dana
              Cason seems to be trying to get some sort of bug also. I will definately keep Marconi in my prayers as I pray for Cason. Dana ... we ... seems ... want
              Message 6 of 11 , Oct 17, 2007
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                Cason seems to be trying to get some sort of "bug" also. I will
                definately keep Marconi in my prayers as I pray for Cason.
                Dana
                --- In Myotubular_Myopathy@yahoogroups.com, "rachel_wrigley"
                <rachel_wrigley@...> wrote:
                >
                > just letting u all please pray for marconi hes ill at the moment and
                we
                > want to keep out of hospital we have started his antibitics up he
                seems
                > a little better today we suctioning him at least 5 times a day before
                > his feeds and esp bedtime and first thing in the morning he still
                want
                > to play bless him his sats are good and his his colour is too the
                > little man woke up early last night wanting to play didnt go bk to
                > sleep till 430am ill keep u all updated on marconi
                > thanks everyone for reading
                > take care
                > Rachel
                >
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