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Peg feed advice please

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    #46
    Steve has just had a rig fitted. Can I ask what type of feed you have. Steve was started on bolus feed 2 to 3 times a day using Nutrison Energy multi fibre. He can still eat a soft diet but after 2 feeds he was feeling very bloated and had an urgent need for the toilet.

    Unfortunately he is in hospital at the moment with pneumonia, they think he could have got it from the hospital when the rig was fitted. He is doing well.

    They have changed his feed to a pump over 24 hours with a 4 hour break while he is ill and are trying to increase the rate everyday, but he was feeling a bit sick. He is now on a protein food same make. Just wondering what everyone else uses.

    Sue

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      #47
      Hi Sue,

      Sorry to hear Steve is in hospital with pneumonia - hope he hurries home to you.

      I also use Nutrison Energy Multi Fibre through a pump.

      Nutrison is made to be given slowly really, so bolus feeding may have been too fast for his stomach?
      maybe he can switch to the non Multi Fibre version, just the Nutrison Energy which is still 1.5cals/1ml. That will allow him to see if it's the fibre that is causing the bloating and bowel issues. (He doesn't have IBS does he?)

      Starting him on a pump for 20hrs in 24 might be the reason for the nausea, continuous feeding takes getting used to. It's usually eased in gradually, but if he's being fed over such a long period it must be at a slow rate - any idea how many mls per hour the pump is running at?

      Is his total calorie intake ok?

      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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        #48
        Hi Sue,

        I’m sorry to hear that Steve is in hospital. Please give him my best wishes and I hope he is back home soon.

        Barry x.
        I’m going to do this even if it kills me!

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          #49
          sorry to hear that Steve is in hospital Sue. I hope he is feeling better soon and back home x

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            #50
            Hi Ellie

            Steve doesn’t have IBS. It’s unusual for him to go to the toilet so often and that’s why they gave him multi fibre to start with.

            They started the pump at 30mls and are gradually increasing. He had it at 75mls but then felt sickly so went back to 50mls which he seemed to tolerate. They are starting to increase again and want to get to 100mls. They are talking about pump feed overnight when he comes home. Perhaps all the different medications are not helping also.

            Sue

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              #51
              Thanks Barry and Shrew I hope he is too. I will pass on your best wishes Barry and hopefully he will be well enough for the next meeting.

              Sue

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                #52
                Thanks for the info Ellie. You are a star. Lynne x
                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.

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                  #53
                  Sue, it took me 10 days to work up to comfortably tolerating continuous feeding at 125mls/hr - started off @25 for 3 days, then upped in increments of 25s untilI had feed at 125mls/h on day 10

                  But... I had the luxury of eating orally too, so there wasn't the urgency of "getting the calories into me" so to speak.

                  I'm sure he'll get there.

                  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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                    #54
                    Hi Sue,
                    I hope Steve is starting to feel much better. Hopefully he will be well enough to return home very soon.
                    Love to you both,
                    Kayleigh x
                    Last edited by Kayleigh; 26 March 2019, 14:22.

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                      #55
                      Hi Sue,

                      I hope that Steve feels a bit better and that the meds soon start to work.

                      Always consider trying to transfer him to the hospice because they generally have a lot more care available and are used to Mnd people. Many of us have been in them.

                      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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                        #56
                        Hi
                        Thank you everyone. Steve is obviously very tired. He is using cough assist to get the secretions up and the physios come 4 or more times a day. They are very happy with him. He will taking the cough assist home with and the family are coming in for training.

                        Ellie thanks, Steve to have tolerated the feed better today and they been able to increase to 75mls. He is a bit frightened about eating at the moment until the infection is better, he doesn’t want to undo all the work he has done, but will try again once home.

                        Terry we are in an excellent ward in hospital. They have had MND patients before and are very aware of his needs. Our MND nurses and respiratory nurse also come to see him regularly.

                        Sue

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                          #57
                          Hi Lynne
                          I have my first visit to the clinic in early May. I bet a peg will be mentioned. I am not sure yet what to do. I suppose everyone is different.
                          Sheila

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                            #58
                            Good luck Sheila, Lynne x
                            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.

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                              #59
                              just reading this thread makes me wonder how I will go on when I need a PEG. I weigh 115kgs, I reckon i'll have to get Dyno rod to fit my PEG

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                                #60
                                Mick is about 106kg. He had a rig January.

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