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    #76
    Hi Douglas,

    Toffee yogurt with mashed banana is my favourite breakfast - yummy! ... and if you add some whipped cream, it tastes almost like a banoffe pie! LOL

    I know the NHS isn't renowned for offering a wide selection of menu options - but hopefully they are giving you more than just yogurt to eat!

    I hope everything is going well with the ventilation and mask.

    Best wishes
    Kayleigh

    Comment


      #77
      Kayleigh, the choice for breakfast is of various cereals from cornflakes to all bran, porridge or toast but yogurt can be requested

      The soft menu main meals manage to look and taste weird e.g. tuna bake which is tasteless e.g. mac’n’cheese which had no discernible cheese content. The small baked potato is good as are the small tubs of ice cream
      Last edited by Dis1960; 3 June 2019, 07:41.

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        #78
        So after another 8 hours overnight in the mask I haven’t heard anything about the CO2 levels

        And yes breakfast was Toffee Vitality yoghurt and a cup of tea

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          #79
          Oh dear, Douglas, something tells me you are not happy with the hotel you've been booked into. Seriously, though, I can understand your frustration with how things are going. I do hope things improve on all fronts and you are soon able to return home.
          Dina

          Trying to keep positive, but not always managing.

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            #80
            Hi Douglas,

            Well done for your perseverance and patience with the mask. You should feel proud of yourself. However, the food doesn't sound like home standards so I really hope you get home soon.

            Love Debbie x

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              #81
              I hope they are looking at you putting on more weight, Douglas;

              Your CO2 levels must have improved, are you feeling a bit better. I'm so impressed that you've managed two nights of 8 hours.

              I've been to a breathing clinic today in Cambridge, don't think that I could do a overnight stay though. It would have to include a full cooked breakfast.

              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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                #82
                Originally posted by Terry View Post
                I hope they are looking at you putting on more weight, Douglas;
                +1

                Not with the hospital food by the sounds of it

                Seriously though Douglas and I know I keep banging on about it, your dramatic weight loss needs to be addressed ASAP.

                Love Ellie.
                Last edited by Ellie; 3 June 2019, 19:56.
                ​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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                  #83
                  Ellie the dietician thinks upping the calories using complan or fortisip etc to at least maintain weight is more achievable than weight gain in the short term

                  Well last night was like climbing uphill from Sheffield in a storm still 7.5 hours but CO2 is still 6.8
                  Last edited by Dis1960; 4 June 2019, 09:55.

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                    #84
                    Hi Douglas,

                    You could ask the Dietitian if it would be suitable to add in some Calogen Extra into your daily routine of Fortisips - just 30ml gives 120 calories.

                    Can you see the settings on the Nippy? They are on the left hand side - in particular, the top box, what does that say?

                    Are they still measuring your CO2 from your earlobe blood? It may be no harm to get a comparable reading from an artery (ABG) but whether it comes down enough to a normal range, I wouldn't know. Did they mention your pH value being abnormal?

                    Best wishes.

                    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


                      #85
                      Hi Douglas;

                      Sorry to hear that your CO2 levels are still high, I am surprised because all of the work you have put into it.

                      If having only nutritional drinks, it' can be important to have extra fiber in one or two of them every day. Normally you should have around 6 drinks a day and quite a lot of extra water, maybe a litre but consult with the experts.

                      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


                        #86
                        Yes still the earlobe so the target range is 4.6-6.0
                        740A4D54-6115-40EC-99C4-2B91732A3D53.jpg
                        The nippy is behind me and lower down so I cannot see the settings

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                          #87
                          Kudos to you Douglas for posting in your current position!!

                          I'm a bit worried the Nippy might be in CPAP mode, or the EPAP / PEEP setting is too high, and that's why your CO2 remains high. If you are able to ask a nurse, doctor or whoever next time they're around, it would be useful.

                          Btw, have you asthma or COPD etc? And I presume your chest has been listened to several times and is clear.

                          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


                            #88
                            Originally posted by Ellie View Post

                            Btw, have you asthma or COPD etc? And I presume your chest has been listened to several times and is clear.
                            Not as far as I know and yes the chest is clear so far even when the cough assist machine is in use much to the chagrin of the student being trained on it.

                            Comment


                              #89
                              This last 0.8 needs more tweaks after 9 hours last night

                              I’m getting an extra fortisip with every mealtime

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                                #90
                                Really hope they sort you out quickly Douglas so you can get home to your comforts!!

                                Big hug to you.

                                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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