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    #76
    Hi Dina,

    I can completely understand why you didn't want to delay getting home - you were well enough to go home and I wonder how many patients are in that situation where they are in hospital longer than they really need to be because of the delay with social workers processing the paperwork (not the patient's fault at all - and can be very frustrating for the patient, as well as the hospital because they probably could do with freeing up the bed!).

    You'd think that with modern technology and the Internet, things wouldn't take so long these days - but there still seems to be far too much beaurocracy and paperwork slowing things down!

    I hope things go well at the meeting tomorrow - hopefully the social worker will be a Speedy Gonzales with the paperwork so that things can get sorted out speedily for you!

    Love Kayleigh x

    P.S ... and getting back on the topic of this thread 'Ventilation' - this forum is a great place to get things off your chest and 'vent your anger' from time to time LOL
    Last edited by Kayleigh; 12 August 2019, 02:46.

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      #77
      Hi Kayleigh,

      Well, I'm certainly hoping that the provision of care can be sorted soon! And on the subject of using the Nippy, it has been making some peculiar, and loud, noises which stopped me getting to sleep, particularly as the mask and pipe kept vibrating! I'm going to ring the respiratory team about it shortly.
      Dina

      Trying to keep positive, but not always managing.

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        #78
        Hi Dina,

        I did notice that, like me, you were a bit of a night owl last night. Some nights I can get to sleep more quickly than on other nights, but there's usually no particular reason for this.

        Sorry to hear you were being kept awake by a rather noisy and complaining Nippy Machine. Perhaps it's as disgruntled as you are about the serious lack of carers you have been provided with - and, unfortunately, it decided to vent it's anger loudly while you were trying to get to sleep!!

        I do hope social services get an urgent wiggle on and promptly sort out some carers for you. Surely it can't be too difficult for them to find enough suitable carers by now, especially considering the large number of care agencies there must be in the Manchester area! Perhaps their excuse is that they only have contracts with certain care agencies - but in urgent situations, I think there should be more flexibility so that social services can provide carers without delay and quickly enough to fully meet every patient's needs.

        I hope the respiratory team can sort out the problems with your grumpy Nippy Machine so that you can get a peaceful night's sleep.

        Love Kayleigh x
        Last edited by Kayleigh; 12 August 2019, 12:14.

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          #79
          Hi Dina,

          Sorry about the lack of carers - how awfully frustrating and annoying for you Hopefully the social worker sorts it ASAP.

          Re hose & mask vibrations, consider:

          Are the mask straps any looser? They do stretch a bit and the seal can get 'flabby' and vibrate, but I'd say it'd have minimal impact on the nose pillow gel rim/silicone, as it's small?

          Is the hose in a different position than in the hospital? For example, is it hanging or drooping now when before it was high?

          Are you using a humidifier?

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

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            #80
            Hi Ellie,

            Thanks for the suggestions. The straps are not at all loose. Nothing is flabby (except me!). The hose is well supported and yes, I am using a humidifier.

            The respiratory nurses are going to check it for me tomorrow.
            Dina

            Trying to keep positive, but not always managing.

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              #81
              Thanks, Kayleigh,

              The meeting with the social worker went well. She is going to do an assessment for CHC funding because of my increased care needs.
              Dina

              Trying to keep positive, but not always managing.

              Comment


                #82
                Hi Dina,

                It's good to hear that the meeting went well. Hopefully they are able to provide carers very soon - do you have to wait to hear the outcome of the CHC application or can they provide any carers in the meantime?

                I expect you've had a tiring day - hopefully your Nippy Machine will be quieter tonight, so that it's easier for you to sleep.

                Love Kayleigh x

                Comment


                  #83
                  Originally posted by Kayleigh View Post
                  Hi Dina,

                  It's good to hear that the meeting went well. Hopefully they are able to provide carers very soon - do you have to wait to hear the outcome of the CHC application or can they provide any carers in the meantime?

                  I expect you've had a tiring day - hopefully your Nippy Machine will be quieter tonight, so that it's easier for you to sleep.

                  Love Kayleigh x
                  Hi Kayleigh,

                  As I had a care package before I went into hospital, it should be fairly straightforward to have it reinstated. The CHC assessment will go at its own pace.

                  I've decided not to use the Nippy tonight - I can't face the noise. I already have a lot of noise coming from the pump for my air mattress so I really don't want anything more.
                  Dina

                  Trying to keep positive, but not always managing.

                  Comment


                    #84
                    Hi Dina,

                    I hope you have a restful and peaceful sleep tonight.

                    It's good to hear you can get your usual care package back while the CHC application gets sorted.

                    Love,
                    Kayleigh x
                    Last edited by Kayleigh; 12 August 2019, 23:25.

                    Comment


                      #85
                      Hi Dina,


                      I know the Respiratory Nurse is coming today and will hopefully solve the problem for you but, Sod's Law being what it is, if the noise can't be replicated today, here are some things to consider and have all happened to me...

                      The reason I asked about the humidifier is that, if the moisture in the hose can't freely drain back into the water chamber, it causes a noise in the hose and mask - this is the usual culprit for me if the hose falls from its usual position of being draped over my bedhead, which allows for good drainage.

                      Check also before it's turned on that the water chamber is fully slotted into the hot plate and both tubes are securely attached to the chamber.

                      The humidifier setting may have been accidentally changed or may be too high, particularly if there's been a change in the weather.

                      Anyway, hope you can sleep well with the Nippy tonight! Btw, I put a folded blanket over my mattress pump which insulates the noise (without blocking the fan outlet/intake)

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

                      Comment


                        #86
                        Hi Dina,

                        Sometimes you can put the mattress air pump on the floor or on a stall to reduce any noise and vibration. Do make sure that it can't fall down.

                        Just a idea.

                        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.

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                          #87
                          Thanks, Ellie. I saw the respiratory nurse today and she was pretty sure she knew what was causing the problem. She thinks that it needs a longer tube to the mask, so that it can lie flat. She has also fitted extenders onto the two short pipes on the humidifier and suggested that the humidifier is lower than the machine when in use. I will try what she suggested. If it doesn't sort it out, I will ring again.
                          Dina

                          Trying to keep positive, but not always managing.

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                            #88
                            Thanks, Terry. The pump is on the floor - I couldn't stand the racket when it hung on the end of the bed!
                            Dina

                            Trying to keep positive, but not always managing.

                            Comment


                              #89
                              Hi Dina

                              I hope everything is going ok with your ventilation - hopefully the adjustments the respiratory nurse made to the machine worked and its no longer noisy.

                              Love
                              Kayleigh x

                              Comment


                                #90
                                Originally posted by Kayleigh View Post
                                Hi Dina

                                I hope everything is going ok with your ventilation - hopefully the adjustments the respiratory nurse made to the machine worked and its no longer noisy.

                                Love
                                Kayleigh x
                                Hi Kayleigh,

                                Thank you for asking. We haven't actually set it up again yet. It has been a challenging week, not helped by still not having any carers coming in. I'm hoping to get my son to help set it up over the weekend.
                                Dina

                                Trying to keep positive, but not always managing.

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