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    #61
    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 Spinal (hand) Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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      #62
      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

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        #63
        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.

        Comment


          #64
          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.

          Comment


            #65
            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 Spinal (hand) Onset.
            Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #66
              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.

              Comment


                #67
                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.

                Comment


                  #68
                  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
                  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.

                  Comment


                    #69
                    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 Spinal (hand) Onset.
                    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #70
                      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; 12 August 2019, 13:45.

                      Comment


                        #71
                        Hi Kayleigh,

                        Coming home didn't work out quite as planned. The hospital social worker wanted me to stay in hospital until Thursday so that she could assess me. I said no because my family and I were going to be making memories this week. I negotiated with the care company and social services for my area to get the care package to restart on Thursday or Friday of last week. It was all set then the agency told social services that they couldn't provide the care! I think you could say I was angry!

                        So, I have been home since Tuesday evening with no care package. My partner is doing his best but my care needs have increased. I now have to wait for a care agency to pick up the package from Brokerage - who knows how long that will take!
                        Dina

                        Trying to keep positive, but not always managing.

                        Comment


                          #72
                          Hi Dina,

                          I hope you were able to spend some quality time with your family as planned but it must be very difficult for you and your partner to manage without the help of carers.

                          I had wrongly presumed that the carers who looked after you before you went into hospital would carry on looking after you once you were home again, with additional hours/carers provided from that agency if necessary. I'm sorry to hear that everything hasn't gone smoothly and you were so badly let down by a care agency at the last minute - I'm not surprised you were angry about the situation and it must be very frustrating for you and your partner that carers are still not in place for you.

                          Hopefully social services will chase things up so that carers are put in place very soon - I would have thought they should be doing that urgently but it wouldn't surprise me if the system was too slow and inefficient due to too much beaurocracy!

                          It's not fair that you have been let down so badly and I hope the situation for you improves very soon.

                          Love
                          Kayleigh x

                          Comment


                            #73
                            Hi Dina;

                            Sorry to hear nothing has worked out for you. I guess you let them know of your frustration and anger.

                            Do try to involve the Mnda and your specialist team in helping get things sorted.

                            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.

                            Comment


                              #74
                              Originally posted by Terry View Post
                              Hi Dina;

                              Sorry to hear nothing has worked out for you. I guess you let them know of your frustration and anger.

                              Do try to involve the Mnda and your specialist team in helping get things sorted.

                              Love Terry
                              Hi Terry,

                              My social worker is coming to see me tomorrow so I shall how that goes, first of all.
                              Dina

                              Trying to keep positive, but not always managing.

                              Comment


                                #75
                                Thank you, Kayleigh. It was probably partly my own fault for being in a hurry to get out of hospital.
                                Dina

                                Trying to keep positive, but not always managing.

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