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Thread: Hello I知 Douglas

  1. #101
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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; 11th July 2019 at 12:15. Reason: Update

  2. #102
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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 pur馥 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

  3. #103
    Forum Member Ellie's Avatar
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    Quote 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 (Even if they've to momentarily turn it on) It seems very outdated to withhold information from a patient when requested

    Quote Originally Posted by Dis1960 View Post

    So I致e been swapped to a pur馥 diet for the weekend at least- I値d prefer to know how many calories I知 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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #104
    Forum Member Terry's Avatar
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    Quote 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

  5. #105
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    Fortisips,yoghurts and creamed puds count thankfully as the pur馥d 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 ��

  6. #106
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    Mick had the rig procedure in january, used his nippy throughout. not had to use the tube yet. I just put 50 ml water through daily, but its done now
    Hope they sort you out and you are home soon x

  7. #107
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    That was the worst night so far - every 8 - 11 breaths ALARM. The nurses gave me a break for ~15 minutes at 0200 and finally gave up about 0500

  8. #108
    Forum Member Lynne K's Avatar
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    Oh dear. Hope that things ease so that you can sleep better. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  9. #109
    Forum Member Ellie's Avatar
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    Sorry you had such a rough night Douglas, hope you can catch up on some sleep today (if the ward isn't akin to a railway station)

    Although I think I know what your reply will be... Did the nurse say which alarm was going off? Or even seem to know anything about the Nippy?

    If one knows what was triggering the alarm - they're shown on screen, for example, high & low flow, high & low pressure, high & low breath rate etc. etc. - then that parameter can be adjusted.

    But I'm guessing I'm flogging a dead horse here unfortunately Is there a respiratory specialist involved in your care still or has it been handed over to nursing?

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

  10. #110
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    They did not know about that model and spent time searching for leaks and trying the older masks

    The specialist nurse today said one repeated alarm was an over volume alarm I was doing 700ml and the setting was 600ml

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