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Question about overnight pump feeding

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  • Ellie
    replied
    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.

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  • SarahWP
    replied
    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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  • Ellie
    replied
    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.

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  • Deb
    replied
    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

    Leave a comment:


  • SarahWP
    replied
    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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  • Ellie
    replied
    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.

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  • SarahWP
    replied
    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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  • Ellie
    replied
    Hi Sarah,

    Just wondering how the feeding is going now?

    Love Ellie.

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  • Terry
    replied
    Hi Sara,

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

    Love Terry

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  • Ellie
    replied
    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.

    Leave a comment:


  • SarahWP
    replied
    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

    Leave a comment:


  • Ellie
    replied
    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.

    Leave a comment:


  • SarahWP
    replied
    Hi all

    I’m pretty sure it’s 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 I’ve 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 isn’t it...

    Love to you all
    Sarah

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  • slp
    replied
    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

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  • Terry
    replied
    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

    Leave a comment:

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