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RE: [Myotubular_Myopathy] oxygen - and sat levels /carbon dioxide

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  • Wendy
    Sorry, what I meant to say was that Zak has never had a trach or full time ventilation. Just oxygen assistance when sick. ... From: Wendy
    Message 1 of 8 , Feb 5, 2007

      Sorry, what I meant to say was that Zak has never had

      (Message over 64 KB, truncated)

    • Elizabeth Peil
      Sorry I have so many questions? I know this might sound a little odd, but do you all bring your children to the hospital as soon as they get sick? Chaz has
      Message 2 of 8 , Feb 5, 2007
        Sorry I have so many questions?  I know this might sound a little odd, but do you all bring your children to the hospital as soon as they get sick?  Chaz has been getting colds on and off this winter, and we have not brought him in.  It seems like as soon as he gets better another cold hits him. We do chest PT, suctioning, and the cough assist.  He also gets oxygen as needed.  He has a nasal canula that sits on his chin, he wont leave it in his nose.  I am just wondering if I think that he is better then he is.  From what I understand kids dont get worse, but it seems he is having so much more trouble this year then last year. 


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      • Wendy
        In my experience, you get years like that, some good winters, some worse years. Jon s advice is good - if you look at ~Chaz s normal saturation levels - when
        Message 3 of 8 , Feb 5, 2007

          In my experience, you get years like that, some good winters, some worse years.  Jon’s advice is good – if you look at ~Chaz’s normal saturation levels – when he’s really well, I wouldn’t let them drop much below 5% - Zak’s normal saturation when he was a baby was low 90’s even when he was really well.  And probably if you took your own sats you might be

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        • Sheallyn
          Every one of our boys will differ as there is a scale of mild to extreme with MTM. My little guy sits anywhere between 92% - 99% a low for him is anything
          Message 4 of 8 , Feb 6, 2007
            Every one of our boys will differ as there is a scale of mild to
            extreme with MTM. My little guy sits anywhere between 92% - 99% a
            low for him is anything under 92% and I was told for him in
            particular that when he desats below this number, give him a few
            minutes, check his color, breathing etc and if those things are a
            problem or if he does not come back up fairly quickly, give him
            oxygen. My sat monitor alarms at a low of 89% for his sats and a low
            of 100bpm's for his HR. Kaden was on oxygen 24/7 from the time he
            was 2 months old until he was about 7 months old. He is now off of
            oxygen unless he destats or is on his bi-pap overnight which we keep
            at a level of 1-2 litres. He seems just fine with this and tolerates
            it very well. My best advice to you is for you to find out
            what "your" son needs in particuar... Try to book him in for an
            overnight sleep study where they can monitor everything and tell you
            by a reading of a machine exactly what he needs and how much.

            We have found this extremely helpful for Kaden as it was not
            someone's opinion but a very high tech set of equiptment that does
            not make mistakes with it's measurements of oxygen & carbon dioxide.

            I know we all listen to our doctors, and they all have had good
            ideas but I have to disagree with anyone saying that we should all
            do this because someone said so. Unless they personally know my
            child I do not take medical advice, it is not in his best interest
            to be diagnosed by a stranger who is unaware of Kaden's specific
            history.


            take care!
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