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    GaryM
    Forum Member

  • GaryM
    replied
    Thanks for the reply Sarah (@slp). I won't be having nighttime feeds at the moment as I still sleep flat on a non-profile bed. I'll probably wait until I feel confident with pump feeding, not even got a pump yet. It'll certainly free up Louise's time as she's topping up the 60ml syringe every ten minutes at present. I think that the bin men will get fed up of all the plastic bottles soon. ๐Ÿ˜‰

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  • GaryM
    Forum Member

  • GaryM
    replied
    Thanks for the replies
    Lynda
    Forum Member
    Lynda and
    Ellie
    Forum Member
    Ellie. I don't think I'm dehydrated, but I used to have seven hot drinks a day, now I'm down to three. So with 60ml before and after each feed and one lot of meds, I'm probably getting 1800ml plus whatever small amount of fluid is in what I have for lunch.

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  • slp
    Forum Member

  • slp
    replied
    Hi Gary

    I have over night feeding via the pump which is so easy and I recommend you try it when you are ready because it frees you up during the day. I soon got fed up with the bottles. I still have coffee in the morning and water during the day and the occasional gin and tonic but have about 4 syringes of water and a couple of pineapple juice during the afternoon.
    It's not an exact science but I have more water if I feel thirsty and more if it is hot.

    Your dietitian will give you a ball park figure of what amount your body needs and you can go from there

    Hope that helps a bit

    stay safe x Sarah xx

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  • Ellie
    Forum Member

  • Ellie
    replied
    Me: I take 300ml water each time I have a flush, Gary, but only one of those is one after a 500ml pump feed (over 4hrs) with the others after meds or just as a 'drink'. I drink one cup of coffee per day and have minimum 1800ml water (I am 50kg)
    I guess it'll be whatever suits you and your stomach - you might not want to slosh around the place as you move ๐Ÿ˜ - but as you say, you'll need to flush after feeding. You'll get into a routine.

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  • Lynda
    Forum Member

  • Lynda
    replied
    Hi Gary, Neil is on 800ml of 2cal overnight and 1600ml of water flushes/meds, with 200ml of feed at 4pm so heโ€™s not feeling hungry during the day. He canโ€™t tolerate anything orally now and dietician wants him to have 2600ml daily to prevent dehydration. He has water flushes before and after feed and before and after medications 8, 12, 2, 4 and 8pm. Oh and pineapple juice! Lx

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  • GaryM
    Forum Member

  • GaryM
    started a topic Tube feeding

    Tube feeding

    As some of you know, I'm moving to tube feeding. Currently having two bottles in the morning and two in the evening giving me 1200 calories. I'm trying to eat something at midday with variable results regarding throat spasms. The dietitian is coming on Tuesday and I'll probably go to all nutritional needs via the PEG afterwards. What I'm wondering is how much fluid do people find they can take at once? Do people have a water topup after the feed or wait a while? At the moment I'm still having cups of tea and coffee as I did before, but that might have to stop soon. It just feels like the PEG will be in more or less constant use throughout the day.
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