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    #16
    Oh my days, scary indeed - and it didn't even frighten your bowels into releasing themselves

    Hope the care agency learn from this

    Here's to a good 3rd night!

    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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      #17
      Hi Sara,

      Pleased that you have had two successful nights, it gives you hope

      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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        #18
        Hi Sarah,

        Just wondering how the feeding is going now?

        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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          #19
          Hi Ellie

          Not good unfortunately. I developed tendonitis and was put on cocodamol which I was the cause of what turned into chronic constipation, despite taking a laxative. I was in absolute agony and it took 2 suppositories to get things moving. But ever since then the feed has been going straight through me. My nutritionist delivered some new feed today so here’s hoping... it’s been quite a week or so!

          Thanks for asking
          Sarah xx

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            #20
            What!!?? Girl, do you ever get a break

            Are you back at low rate of food delivery for your Princessy tummy And just when you seemed to have turned the corner with the feeding - you both must be so tired of it all...

            And the tendonitis - where was it and can you manage not to aggravate it ? Obvs you don't want to have to take cocodamol again!

            Best of luck on the new feed.

            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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              #21
              Thanks Ellie

              To say I’m fed up is an understatement! Last week was one of my toughest yet since diagnosis. I’m losing weight and feeling quite weak so we need to get it sorted ASAP. Tried a new feed last night (just 500ml and on a slow rate) but same problem. We’ll give a day or 2 though. I’ve always had quite a strong constitution and used to eat all sorts of different food with my job which took me all over the world, so why it can’t deal with something so bland I have no idea!! ��

              The tendonitis was in my shoulder/upper arm, I think from over stretching to grab the bed rails when the carers turn me. So, lesson learned and no more stretching! It was quickly resolved but yes, no more cocodamol, however bad the pain!

              Hope all is well with you?

              Love,
              Sarah

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                #22
                Hi Sarah,

                I am so sorry you're having such a terrible time and I am not surprised you're feeling so low. Having an upset tummy with little or no moblity is just awful so I really hope they sort it soon .

                I am not PEG fed yet but I have a very sensitive tummy and eat plain food with no gluten. This started the same time as my MND symptoms so it's hard to believe they're not related although my allergy tests were ok.

                Sarah, I am loving reading your blog... it's so warm and funny in spite of all you have to cope with.

                Take care and fingers crossed you feel better soon,
                Love Debbie x

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                  #23
                  Sar, when I started pump feeds, my regimen was started off at 25ml/h and taking 100ml (if I remember correctly) It took 10 days to work up to 500ml at 125ml/h BUT I had the luxury of being able to eat orally too, so I wasn't left hungry.

                  Are those Ensure bottles suitable for your tummy if you were to take a week or so to slowly build up tolerance to the pump feeds? That way you could better manage your calories.

                  I am doing well, thanks - just getting used to the big smelly elephant sat in my living room

                  Love Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #24
                    Thanks Debbie & Ellie

                    Good idea about taking the feed via a syringe while I slowly build up my tolerance to the pump. I don’t like doing it as it takes so long but I will if necessary. Been feeling very lethargic today which isn’t surprising given I’ve retained so little nutrition over the last week. You come up with far more suggestions than my nutritionist!! By the way, have missed something- what elephant?!

                    So glad you’re enjoying the blog, Debbie. I enjoy writing it and gives me something to focus on.

                    Much love to you both
                    Sarah xx

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                      #25
                      Oh, that's just the Covid-19 elephant stalking me !!

                      Glad you found a workaround for turning in bed.

                      Beautiful spring day and we now have more daylight hours than night time - woohoo!!

                      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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