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Thread: NIV Overnight

  1. #1
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    NIV Overnight

    My husband's in hospital for the third time in 8 weeks.
    He's had chest infection and problems with secretion.
    After a week in the high dependency respiratory unit its been agreed he needs a NIV Overnight.
    The issue is he has little if no arm movement and limited use of one hand.
    The hospital are arranging for SALT and environmental to trial various bells buzzer.
    Bottom line is if he can't operate these he must have a waking carer which could take months to organise. He needs to be able to alert me if he feels sick or is having problems.

    I contacted a local nursing home where he spent a few months and which is 5 mins from home. I hoped he may be able to stay there while they sort alarm out.
    I was horrified to be told they wouldn't take him with a NIV. We were planning on using this for restbite later as he is happy and they know him well.
    We have another meeting tomorrow with the hospital palliative care Dr.
    Has anyone else experience of this, have you waking carers?
    I'd be interested in hearing
    Thank you

    Kernowmum

  2. #2
    Forum Member Ellie's Avatar
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    Sorry to hear your husband is back in hospital Kernow.

    Consider a wireless doorbell. The chime part plugs in, this can be in your room, and hubby has the bell bit.

    He could use his hand or foot to tap it, or if he can move his head, it can go on his pillow. The ones without a physical button to press are best, look for the flat ones that can be easily touched anywhere on the front. Amazon have lots, have a look and see what you think. His part can be made non-slip by sticking Dycem on its underside.

    If that isn't a runner, ask the OT/Environmental Service if they can connect a big button switch to some type of buzzer which you would hear through a baby monitor.

    That's such a shame the care home refuse NIV - they definitely know it's Non-Invasive, do they? I hope you find somewhere for respite Kernow.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #3
    Forum Member Terry's Avatar
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    Hi Kernowmum;

    There are one or more notes on threads about them but I think that at least one was negative because the carer slept.

    I hope you get something sorted under CHC that works.

    Just thinking a little out of the box, I wonder if there's a heart monitor that would buzz if it rises about a certain level, I know my old training monitor did.

    Clutching at straws but it might be worth asking if they have no other ideas.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
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    Hi Ellie and Terry
    Thank you both for your advice. He's out of hospital and in the local hospice (10 mins away) while we get things sorted. He's coughing again so they are tweaking the drugs to dry up secretion. I think th SALT can get us a big buzzer.
    At present he has a syringe driver to deliver morphine and the glyco..can't remembered it's name.
    I was hoping we could look at alternative methods of delivery or else it will mean daily visit from a nurse.
    One day at a time.
    Best wishes to you both

    Kernowmum

  5. #5
    Forum Member Ellie's Avatar
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    Good to hear they're working to get your husband home Kernow.

    Usually a syringe driver is used when other methods of administering meds are no longer adequate - unless the hospital/hospice introduced it for convenience??

    If the slow release morphine wasn't good enough through his feeding tube/orally, using a syringe driver is a more effective way of delivering consistent pain relief. The same can be said about Glycopyrronium Bromide - subcutaneous delivery allows more of the drug to be absorbed than if were taking it into his stomach/orally.

    The downside is, as you say, a nurse needs to change it. There's always a trade off!!

    Love to you both,
    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  6. #6
    Hi Kernowmum, I've just got my hubby home after 5 months in hospital, he has to have a waking carer at night as he has no movement at all (actually ours is a nurse, and we have a carer in the day). We've only been home a week but it seems to be going ok. We have also had the environmental controls people out to adjust his switch for the pager that i have in the bedroom. When he had some hand movement he had a hand switch and now he has a little switch that sits above his eyebrow as this is the only movement he has left. He is also on NIV, but 24 hours a day, so i know how important it is to be able to raise the alarm, when the mask slips (as his always does!) or when he feels nauseaus. I hope you manage to get your husband back home (if this is his wish) asap, it took us a good few months sat in hospital waiting for it to be agreed. Like you we couldnt find a nursing home to take him with the NIV - other than one in Bournemouth which is a bit too far for us.
    Best wishes to you both

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