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PEG fitted for dad

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    PEG fitted for dad

    Hello everyone.

    Been a while since my first post.

    An update of sorts I guess. Dad had his PEG fitted yesterday, at Lane Fox Unit @ St Thomas’ hospital. I was able to stay with him up until and then again after the procedure. All has gone well and he will be home tomorrow! My mum, sister and myself had training today on the use of the feeing pump etc. Mum is very apprehensive about getting it wrong. I said I will go over Friday night and help her set up the first nights feed. Everyone is very keen for dad to start the peg feeding as he has lost 1.5 stone in weight in about 3 months. He has been eating blended food now for a while as his swallowing has deteriorated, supplemented by Ensure. He still eats some other foods that he can manage - risk feeding according to the docs - but he wants to continue. Things like crisps that melt e.g skips. He sucks on ginger nuts and likes a bowl of ice cream and a bowl of porridge for breakfast.

    I don’t really know what my point is here to be honest. Before the procedure dad told me he wasn’t sure it was all worth the hassle. Again worrying about the burden on us I think and a reluctance to take this further step.

    #2
    Ah that's great for your dad DeniseB-C and wonderful for you both that you could stay with him most of the time.

    Honestly, it won't take your mum long to become an expert in the pump 😊 There are YouTube videos on the feeding pumps if anyone needs a refresher or feel free to ask us any questions.

    It's probably a Flocare or FreeGo pump?

    Thanks for posting. Best wishes to you all.

    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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      #3
      Yes it’s a FreeGo pump. I think it will become very easy, very quickly. Mum is just anxious about getting it wrong. The lovely lady training us told her that the worst she could do was give him wind 🤣

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        #4
        To be honest if I can use a pump anyone can. 😁🤗😍😄xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Same here. Its when you have it all set up and the alarm goes off. So you take it apart and it looks fine. We have an amika pump and a really nice back pack. 😊

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            #6
            That’s good for your dad Denise. Thanks for the update and good luck for first attempts for all three of you, Lynne x
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

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              #7
              So epic fail tonight! GP has apparently failed to sign off on the feeds for dad so we didn’t get delivery 😞 The hospital had sent him home with 9 pouches but these don’t fit the giving set as the spout is of incorrect size. Am I missing something or are these just incompatible?
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                #8
                Dad has the FreeGo pump.

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                  #9
                  Nope Denise, someone messed up 😩😩

                  That food is Nutrison from Nutricia and goes with the Flocare Infinity pump and giving sets from Flocare (Nutricia)

                  The FreeGo pump is from Abbott and goes with Jevity food and giving sets from Abbott...

                  xx
                  ​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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                    #10
                    Thanks Ellie. That’s what I thought! Thank you for confirming. Dad said these were given to him last minute upon discharge from hospital. He was disappointed not the be able to get going on this tonight. I did think he looked really well today after having had a peg feed in the hospital before discharge. Certainly less weak, so I was frustrated to not get going with this tonight too! Annoying.

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                      #11
                      Originally posted by DeniseB-C View Post
                      I did think he looked really well today after having had a peg feed in the hospital before discharge.
                      That's fantastic Denise.

                      Hope the hospital isn't too far away so you can swap the food tomorrow or that the GP's supply appears! xx
                      ​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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                        #12
                        So successful first feed last night! One alarm in night after dad had a wee in his he-wee. Kinked tube. Tonight, shortly after setting up feed, needed to hold feed for a toilet trip, forgot clamp! Spillage! Won’t make that mistake again! Live and learn and all that 😆

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                          #13
                          Celebrate **** ups as making mistakes is the best way to do it right the next time 👍🤗😍😘xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                          Comment


                            #14
                            DeniseB-C Stomach contents all over the place because of a forgotten clamp closure - girl, that's a right of passage rookie error. Congrats 😂😂😘
                            ​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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