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Thread: Question about overnight pump feeding

  1. #11
    Forum Member Terry's Avatar
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    It's always worth making sure that liquid medication is suitable for going through a PEG, some is not but often OK if mixed up and pumped very slowly.

    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.

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  2. #12
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    Hi Ellie
    yes it is a smooth liquid and you have to keep it in the fridge x I have been having it in liquid form for 12/18 months
    love Sarah xx

  3. #13
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    Hi all

    Iím pretty sure itís not an underlying problem as the diarrhoea was only happening in the morning. Last night I had 600ml over about 8 hours, so at a slower rate (& Imodium) and...no diarrhoea! Yay! Now need to fit in the remaining 400ml this afternoon. Really hoping Iíve finally cracked it but not counting my chickens just yet!

    Thanks for that advice and support all. This really is the gift that keeps giving isnít it...

    Love to you all
    Sarah

  4. #14
    Forum Member Ellie's Avatar
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    Yay, that's such good news Long may it continue!

    I'm sure you can rig up something for later but the special backpacks are very handy to have - maybe ask Abbott for one? If they're as good as Nutricia, and I've no doubt they are, you'll get one promptly.

    I put mine on the back of my wheelchair, so I can eat on the go or just pootling around the house. They have pockets and openings in all the relevant places so the whole backpack need not be opened for access - good for privacy in public. (I know you intend to do full overnight feeds but you never know)

    This is what the FreeGo backpack looks like:

    FreeGo backpack.jpg

    Hope tonight goes well too.

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

  5. #15
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    I think I have a back pack that the Abbott nurse gave us somewhere- we’ll dig it out as that will be ideal for pootling about, as you say. :-)

    2 successful nights now - yay!

    As an aside, I had quite a time of it today. 2 carers turned up who had never been before and put my sling on so badly I promptly very nearly fell right through it. It was very scary. They had to man handle me back onto the bed and I’ve stayed here for the rest of the day. We rang the office and complained of course. Luckily one of my regulars came tonight, with someone who’s been twice before, so I was in safe hands.

    Good night all!
    Sarah

  6. #16
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #17
    Forum Member Terry's Avatar
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    Hi Sara,

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

    Love Terry

  8. #18
    Forum Member Ellie's Avatar
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    Hi Sarah,

    Just wondering how the feeding is going now?

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

  9. #19
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    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

  10. #20
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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