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    #91
    Just had a case meeting and they think I’m here for upto a month

    Apparently the blood CO2 was worse after last night and at one point my breathing was 12 per minute whereas Nippy 4 was 16

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      #92
      Oh Douglas, I hope it won't take that long

      Did you manage to get anyone to look at the settings? Maybe next time your wife is in she might take a pic of the screen?

      Glad you're getting extra calories.

      Big hug again.

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

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        #93
        hope they get you sorted soon X

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          #94
          Oh, Douglas, that's disappointing for you. I hope they get you sorted sooner than that.
          Dina

          Trying to keep positive, but not always managing.

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            #95
            Not a month, I hope you get sorted sooner.
            Sheila.

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              #96
              Last night and the night before the level was 7.5

              Is there anything worse you can do to a Jaffa cake than slather it with barium paste

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                #97
                Hi Douglas,

                Only the NHS could ruin the taste of a perfectly good Jaffa Cake! LOL

                I hope you are being looked after very well by the doctors and nurses. Hopefully you get free WiFi and a TV with plenty of channels to keep you entertained.

                It's good you are being provided with Fortsip - hopefully it tastes ok (It probably tastes better than the NHS Jaffa Cakes and most of the hospital food anyway! LOL)

                Best wishes
                Kayleigh x
                Last edited by Kayleigh; 7 June 2019, 13:27.

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                  #98
                  Originally posted by Kayleigh View Post
                  I hope you are being looked after very well by the doctors and nurses. Hopefully you get free WiFi and a TV with plenty of channels to keep you entertained.
                  Best wishes
                  Kayleigh x
                  If Wythenshawe is like Salford Royal, the TV costs a fortune and the wifi is restricted to 30 minute sessions - so annoying if you are trying to do something specific online.
                  Dina

                  Trying to keep positive, but not always managing.

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                    #99
                    Douglas, you have to look on the bright side - at least they did the video flouroscopy on your swallow

                    Thankfully I got a digestive biscuit, as I loathe Jaffa cakes!!

                    I'm sorry your CO2 is rising again - is there a plan of action?

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

                    Comment


                      Hi Dis;

                      Did you give Ellie the settings etc.

                      I do hope you haven't got restricted internet like Dina says, it is wrong, especially for us.

                      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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                        Wythenshawe offers the basic 5 channels free but others can be paid for
                        Wi-fi is free but reregister daily with name and email address just after 8am

                        As of late June the basic 5 channels are available free from 8am to noon.
                        All other times you have to pay
                        Last edited by Dis1960; 11 July 2019, 11:15. Reason: Update

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                          Sadly it was the Jaffa cake that did me in..it took a few swallows and a sip of barium-infused water to get it down and the playback clearly showed a bit of liquid headed the wrong way

                          So I’ve been swapped to a purée diet for the weekend at least- I’ld prefer to know how many calories I’m getting and boost some other way

                          And Terry the settings are only visible when operating...I asked for a photo but they said when it was finalised

                          Comment


                            Originally posted by Dis1960 View Post
                            Sadly it was the Jaffa cake that did me in..it took a few swallows and a sip of barium-infused water to get it down and the playback clearly showed a bit of liquid headed the wrong way
                            That should push the importance of having the feeding tube fitted Douglas.

                            If they're keeping you in hospital, it's the perfect opportunity to have the procedure and they're obviously giving you a bit of an MOT, which is good.

                            They've no excuses really to decline it - if they use 'breathing' as an excuse, rather than a PEG procedure, you can have a RIG procedure and use the Nippy throughout.

                            Could a visitor take a photo of the screen ? (Even if they've to momentarily turn it on) It seems very outdated to withhold information from a patient when requested

                            Originally posted by Dis1960 View Post

                            So I’ve been swapped to a purée diet for the weekend at least- I’ld prefer to know how many calories I’m getting and boost some other way
                            Again, you should be told how many calories you are getting! I wonder if adding thickeners to the Fortisips would work? Or they do a yoghurt style drink which may be better? They also do Fortisip/Nutilis Fruit pudding style, for extra calories.

                            Big hugs Douglas.

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

                            Comment


                              Originally posted by Ellie View Post
                              Douglas, you have to look on the bright side - at least they did the video flouroscopy on your swallow

                              Thankfully I got a digestive biscuit, as I loathe Jaffa cakes!!

                              I'm sorry your CO2 is rising again - is there a plan of action?

                              Love Ellie.
                              I think that I would struggle to get a jaffa cake down because of the different textures. Like Ellie, I also don't like them.

                              Just because you have had a bit of liquid go down the wrong way when doing that probably doesn't mean that drinking fortisips would do the same.

                              How are you managing having enough fluids?

                              They can feed and water you through a nasel tube.

                              Good news about TV and Internet but shame you have to log in every morning. Have you got TV apps so you can get other channels?

                              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


                                Fortisips,yoghurts and creamed puds count thankfully as the puréed menu is less tasty than the soft

                                Terry A fortisip and normal drink at each meal makes 1l per day. So any extra drinks are a bonus

                                My iPad has iplayer, nowtv, Amazon prime and Netflix apps ��

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