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