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Thread: Ventilation

  1. #31
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    Hi Dina
    How are you doing. I am sure you will be fine and soon be back home. Thinking of you.
    Love Sheila

  2. #32
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    You may have a nose only mask as well for the PEG trials/procedure

    Also remember when they ask coffee or tea you can ask for cold milk or water flavoured with cordial

    Good luck

  3. #33
    Forum Member Ellie's Avatar
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    Hi Dina,

    In a way no notice of your admission was good, it eliminated days of potential stress of an iminent stay. And I'm glad that bed didn't become available last Friday

    For the NIV machine, please be aware that the best mode setting for those of us with ALS/MND is pressure support mode, because it lessens the 'Work of Breathing' effort most of all on our respiratory muscles which, after all, is the purpose of NIV!

    Our lungs are not damaged, our muscles are, so we are different to those with chronic lung conditions, which not every healthcare professional gets

    Best wishes for your stay and for the sleep study.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #34
    Forum Member Terry's Avatar
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    Hi Dani,

    1 am, you must have got that time wrong. Nobody phones at that time unless they are in trouble. Crazy and ambulance transport sounds about right.

    As Ellie says, it stopped you worrying much. Please LISTEN to what Ellie says and also get all the settings, modes, times and write comments on each.

    Also record any information, especially blood Co2 and O levels.

    Great advice from Douglas and see if he has any more tips.

    Hope you are comfortable, etc.

    Love Terry

  5. #35
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Dis1960 View Post
    You may have a nose only mask as well for the PEG trials/procedure

    Also remember when they ask coffee or tea you can ask for cold milk or water flavoured with cordial

    Good luck
    Thanks for that, Douglas.
    Dina

    Trying to keep positive, but not always managing.

  6. #36
    Forum Member Gillette's Avatar
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    Hi Ellie,

    I was quite looking forward to the stay as it has given my partner a break from his usual caring role. I had already told the consultant that I wouldn't be admitted until this week as my granddaughter's visit took precedence! Heaven help anyone who is fool enough to try and prevent this Nana from cuddles with her Cherub!

    I think the pressure support mode is the one I've been on today. They said the other mode is what I would have to be on during the PEG procedure.

    I was impressed with the consultant who came to see me today. He respected my stated choice of not wanting to use NIV during the day, in the future. Some of the medical staff have seemed to question why I would have it at night but not during the daytime. Well, that's their problem, not mine.
    Dina

    Trying to keep positive, but not always managing.

  7. #37
    Forum Member Kayleigh's Avatar
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    [QUOTE=Terry;91371]"Hi Dani,"

    Hey Terry,
    Do you have Dani Minogue on your mind? I thought you'd prefer her blonde sister - Kylie! LOL

    Love Kayleigh x
    Last edited by Kayleigh; 31st July 2019 at 18:36.

  8. #38
    Forum Member Kayleigh's Avatar
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    Hi Dina,

    It good to hear from you and I'm glad you have got a good Consultant. Hopefully the nurses are making sure you are comfortable and you have everything you need.

    Love Kayleigh xx
    Last edited by Kayleigh; 2nd August 2019 at 13:11.

  9. #39
    Forum Member Terry's Avatar
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    Hi Dina;

    Sorry about getting your name wrong. LOL.

    Quote Originally Posted by Gillette View Post
    Some of the medical staff have seemed to question why I would have it at night but not during the daytime. .
    Some of the staff maybe don't know a lot about MND and breathing. I think that trying it out in the day time is good till you get it set up and then it's your choice. Most Mnd people seem to get their breathing troubles at night to begin with and not while they are awake in the day time.

    Love Terry

  10. #40
    Forum Member Kayleigh's Avatar
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    Quote Originally Posted by Terry View Post
    Hi Dina;

    Sorry about getting your name wrong. LOL.

    Love Terry
    It was probably the fault of 'predictive text' - it can be so annoying when a word we type automatically changes to a different word than we wanted it to be!

    It can happen to any of us Telly .... oops, I mean Terry. (But If you ever refer to me as Kylie rather than Kayleigh - I'll know it's because you are daydreaming about those Minogue sisters again!) LOL

    Love and hugs,
    Kayleigh x
    Last edited by Kayleigh; 2nd August 2019 at 13:12.

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