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Thread: Hello I知 Douglas

  1. #81
    Forum Member Terry's Avatar
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    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

  2. #82
    Forum Member Ellie's Avatar
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    Quote 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; 3rd June 2019 at 20:56.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #83
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    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; 4th June 2019 at 10:55.

  4. #84
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #85
    Forum Member Terry's Avatar
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    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

  6. #86
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    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

  7. #87
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #88
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    Quote 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.

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

    I’m getting an extra fortisip with every mealtime

  10. #90
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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