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Thread: Ventilation

  1. #61
    Forum Member Ellie's Avatar
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    Hi Dina,

    I wouldn't be too worried re your chap's ability to be trained (and to remember) how to use the NIV machine

    Your settings will be pre-set, so it's more that you both need to know your way around its menus and, for example, the humidifier, if you need to use one, and the alarms etc.

    There are some good online tutorials for both the Nippy 3+ and the 4, which you can watch in the more relaxed home environment - actually, he might want to watch them before he's shown by the nursing staff?? (Note: the tutorials for the Nippy 4 are shown as 'Breas V45' machine, just for extra confusion )

    I'm sorry to hear about your night time tummy troubles - how awful for you. Without wanting to pry, but do you know what's causing your nausea and vomiting? It must be very debilitating. Have you anti-sickness meds on hand for these occasions? Also, given your cough is weak, a suction machine might be good to have if you can't clear your mouth.

    Thinking of you.

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

  2. #62
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    Dina, it sounds like you are doing exceptionally with the masks.

    You will have a clinic appointment at Wythenshawe about 4 weeks after you leave and a nurse will come out to check CO2 ( yes the earlobe test at home ) and check the Average time on the ventilator

  3. #63
    Forum Member Gillette's Avatar
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    Hi Ellie

    No, I don't actually know what causes the nausea and vomiting. I have just accepted it as part of life but I do now have some medication for it.

    This afternoon I was tried on the cough assist, which I think went quite well. It certainly feels more effective than the Lung Volume Recruitment Kit - and a d*mned sight quicker to say!
    Dina

    Trying to keep positive, but not always managing.

  4. #64
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Dis1960 View Post
    Dina, it sounds like you are doing exceptionally with the masks.

    You will have a clinic appointment at Wythenshawe about 4 weeks after you leave and a nurse will come out to check CO2 ( yes the earlobe test at home ) and check the Average time on the ventilator
    Thanks for the heads up, Douglas. Josh, the specialist nurse has said he is planning to come to my home to train the carers how to use/clean the machine.

    How are you getting now that you are home?
    Dina

    Trying to keep positive, but not always managing.

  5. #65
    Forum Member Ellie's Avatar
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    Hi Dina,

    Hope all is continuing to go well with the BiPAP and nobody is too daunted by the machine.

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

  6. #66
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    Quote Originally Posted by Gillette View Post
    Thanks for the heads up, Douglas. Josh, the specialist nurse has said he is planning to come to my home to train the carers how to use/clean the machine.
    Good luck, Lin the nurse offered to train the carers but they passed on the offer

    How are you getting now that you are home?
    Reasonably well until last week..first the electrics kept tripping then Christine got pancreatitis due to gallstones and was taken to Wythenshawe
    So her brother kindly came over to start/stop the ventilator but one night the power tripped and nippy4 was on battery which failed after continuous alarms at 1am. An electrician has now put the bed,mattress, ventilator on a separate circuit
    Christine is now back but the mask last night was just blowing out of the bottom of the mask.

  7. #67
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Dis1960 View Post
    Good luck, Lin the nurse offered to train the carers but they passed on the offer
    Reasonably well until last week..first the electrics kept tripping then Christine got pancreatitis due to gallstones and was taken to Wythenshawe
    So her brother kindly came over to start/stop the ventilator but one night the power tripped and nippy4 was on battery which failed after continuous alarms at 1am. An electrician has now put the bed,mattress, ventilator on a separate circuit
    Christine is now back but the mask last night was just blowing out of the bottom of the mask.
    Oh, crikey! What a basinful!

    My partner and I had the Nippy 3+ training this afternoon. They will do the Cough Assist training tomorrow am due for discharge tomorrow, if the hospital social worker deals with the paperwork about the care package.
    Dina

    Trying to keep positive, but not always managing.

  8. #68
    Forum Member Terry's Avatar
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    Hi Douglas;

    Hope Christine is a lot better and you get the mask sorted out tonight. Trust your electrics are sorted now.

    Hi Dina;

    Home tomorrow at last. try to get any medications sorted out early to get a quicker get away.

    Love Terry

  9. #69
    Forum Member Ellie's Avatar
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    Oh Dina, that's hard for you on a number of levels for sure, I'm sorry.

    I feel kind of hard to write on but I know I'll forget if I don't do it now...

    Douglas' post about his power interuption due to fuses prompts me to remind you both to register with your power provider as having medical equipment, if you have not done so already.

    Obviously Douglas' issue was internal but, as winter looms, it's advisable to register so you're a 'Priority' in the event of a power cut and subsequent power restoration - IDK if you will be given a loan of a generator or not (if not, one can be hired)

    It's also worth thinking about having back up batteries for certain equipment or have a contingency plan for charging, ie, a friend or family living on a different power line!!

    I hope the Cough Assist training goes well and you get home.

    Once again, sorry about your ward pal.

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

  10. #70
    Forum Member Kayleigh's Avatar
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    Hi Dina,

    Hopefully everything went smoothly for your return home from hospital. I hope everything is going well with the care you are receiving, and using the ventilation and the cough assist machine is working well for you.

    I hope you are having a lovely weekend and your home wasn't one of those affected by the powercuts due to the stormy weather on Friday/Saturday.

    Love Kayleigh x
    Last edited by Kayleigh; 12th August 2019 at 12:45.

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