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  • Ellie
    replied
    Polly, what about steeping the parts in Milton after cleaning them? x

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  • Polly
    replied
    Matthew, I flush the nozzle with water every time it’s used. I empty and clean the container every day. Even so after a few weeks, the mould appears. It may be because my husband drinks jersey milk so the fat content might be causing it.

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  • matthew55
    replied
    Keep a large container of water next to the machine, then after every use put the probe into the water to clear the pipe. When the tone of the motor changes and suction stops it is time to empty the machine. I've been using mine for a while and never had mould. πŸ‘

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  • Polly
    replied
    Our suction machine was provided by the specialist respiratory nurse. I ring up when we need replacement nozzles and tubes. It sounds a bit yucky but we find that mould starts to appear in the tube! So nozzles and tubes need to be replaced regularly. The machine is brilliant as not only does my husband have profuse clear saliva, but has started to have sticky white secretions at the back of his throat as well. He has no use in his hands, so I need to use the machine but he has got used to me using it. We find it’s especially useful at night to clear any secretions at the back of his throat when he lies down.

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  • Bowler
    replied
    GaryM excellent news πŸ‘

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  • Ellie
    replied
    At last, Gary, somebody with common sense!! x

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  • GaryM
    replied
    A bit of a result today. I had a return visit to Wythenshawe booked this Friday. I thought it was to check how I was getting on with the equipment. So, because I've not really been able to try the ventilator properly due to saliva we thought it made sense to postpone for a few weeks. Anyway when Louise phoned up she was told it was just to do a blood gas test on my ear while sat in the car. Louise said she wasn't happy going to all the trouble of getting me there just for that and the respiratory physio agreed to come to the house to do it. She will also bring a suction probe and show Louise how to use it. We couldn't really have asked for more than that, so smiles all round.

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  • Ellie
    replied
    Gary, I know it's a poor substitute, but there are some good 'how to' videos on YouTube for most models of suction machines, even if they demystified the apparatus a little for you both x

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  • matthew55
    replied
    Using the suction machine is simple if you do it yourself. It's amazing how quickly you lose the gag reflex. It's not so cool when others do it for you, think dentists. πŸ˜‰

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  • Bowler
    replied
    Gary this is so frustrating for you and Louise. If it helps at all in situations like this I used the phrase β€œat risk of” when talking to the medics. It almost always got the desired result.

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  • GaryM
    replied
    Originally posted by SueM View Post
    Gary, community health services have a responsibility to provide such equipment as a suction machine and the consumables that go with it, in my area the DN team would be responsible for that. Your GP should be able to advise you but whoever organised the suction machine ought to have sorted it.
    It was arranged by the hospital via community health services, Sue. Thankfully, my OT has sorted it out. She told us that the respiratory physios should really come out and show us how to use it, but when we asked they said they're not doing home visits at the moment because of covid. Louise is finding it really hard having to deal with all this equipment at the same time as doing everything else. It was always my area of expertise, understanding machines and equipment. I could really have done with it today when I've felt like I'm being waterboarded with saliva.

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  • SueM
    replied
    Gary, community health services have a responsibility to provide such equipment as a suction machine and the consumables that go with it, in my area the DN team would be responsible for that. Your GP should be able to advise you but whoever organised the suction machine ought to have sorted it.

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  • GaryM
    replied
    Thanks for the replies Matthew and Ellie. I do have a community neuro team. I've contacted the OT and SaLT to see if they can help and Louise will be giving the GP a call. I agree with your sentiment Ellie, why does it have to be so difficult. You'd think registering with district nursing would be automatic, it's not like I'm going to get better.

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  • Ellie
    replied
    Originally posted by GaryM View Post
    ... District nursing said I'm not registered for care with them
    Suction machine 'disposables' aside, it's worth being registered for community nursing - can your GP register you?

    Why is nothing ever straightforward 😟😟

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  • matthew55
    replied
    Depending on which council you are in you should have a community neuro team? They would have the necessary! 😁

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