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    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.
    Each day is made easier with a bit of humour.

    #2
    Hi Gary, Neil is on 800ml of 2cal overnight and 1600ml of water flushes/meds, with 200ml of feed at 4pm so he’s not feeling hungry during the day. He can’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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      #3
      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 😏 - but as you say, you'll need to flush after feeding. You'll get into a routine.
      ​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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        #4
        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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          #5
          Thanks for the replies Lynda and 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.
          Each day is made easier with a bit of humour.

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            #6
            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. 😉
            Each day is made easier with a bit of humour.

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