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    PEG done

    Originally posted by denise View Post
    Did Gary say he's having his peg done this week?
    He did. It was done yesterday morning, hurrah. Went really well, although Sunday was very stressful waiting for a call to say I could go in. We were told to expect a call on Sunday morning, informing me of the Covid test result and whether they had a bed. By 1pm we hadn't heard anything so my wife phoned to see what was happening. The ward I was expecting to be admitted to had no record of me so we eventually got through to the bed manager who said it would be sorted and someone would phone back to confirm. By 4pm still nothing so phoned bed manager again who was surprised that no one had phoned. He then put us through to the ward and they said they had been extremely busy but to come in at 7pm. Staff on ward have been fantastic but I was a bit stressed as I thought if it was cancelled it might be postponed beyond when I'd be able to cope with the surgery. Anyway, went to endoscopy at 8am and back on the ward by about 10. So far, so good. I was very nervous beforehand but as soon as the sedative kicked in I was fine and as people told me you don't even notice the camera going in. I've been managing with paracetamol so far and the insertion point looks okay. Got to stay in for a few days to check for peritonitis (rare). The night before the op, there was a chap on the ward who sang and talked in his sleep and snored louder than anything I've ever heard so that contributed wonderfully. Thankfully he went home yesterday so last night was much better for the whole ward.
    Each day is made easier with a bit of humour.

    #2
    I am so glad it went well. I had been thinking of you. Stephen was worried sick before hand but it went well. It's a bit nerve wracking cleaning around the pipe and flushing the pipe. I feel as though i dont have enough hands to hold everything. Stephen seems to have a lot of pipe so its difficult trying to tape it all to his chest without it falling down. Funny the other night he had a glass of wine and when we looked at the pipe it had wine in it! Need something other than tape to keep it in place. He squeals when I pull it off! Matthew bought something off Amazon that might be worth a try. Stephen used to sing and laugh when he was asleep but at least now with his breathing machine he doesn't seem to anymore. Hope you are home soon.
    Denise 😚

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      #3
      Well done Gary and thank you for keeping us informed. I had my fingers crossed for you that the procedure would go ahead and go well.

      Hope you get home soon and that you get a good sleep tonight.

      Love Debbie x

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        #4
        Glad it's all gone okay Gary, hope you have a peaceful night
        Diagnosed July 2020, ALS bulbar onset.

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          #5
          Fantastic news Gary.

          Wishing your tummy a speedy recovery 😃

          Thanks for the update.

          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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            #6
            Thanks for all the kind thoughts.
            Each day is made easier with a bit of humour.

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              #7
              I can't remember how long I've had it but most of the time I forget it's there. Time init 😉😄

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                #8
                Wishing you a speedy recovery Gary. It is now a well proven conclusion that good nutrition improves the prognosis.

                Best wishes,
                Barry
                I’m going to do this even if it kills me!

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                  #9
                  Hope you're healing well, Gary.

                  Thinking of you,
                  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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                    #10
                    Back home on Thursday afternoon. Had two trial feeds on Tuesday and Wednesday to check how I responded, which was okay. Don't plan to use it at least for the first few weeks as I can drink the nutrition drinks more easily and quickly than using the PEG. District nurse was supposed to come and do first clean and flush today but I think they were a bit stretched. Anyway, the feed company contact, who had already visited my wife on Wednesday to train her in PEG care and use, volunteered to visit and was very helpful. Very little pain, just taking liquid paracetamol twice a day at the moment.
                    Each day is made easier with a bit of humour.

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                      #11
                      Sounds as if things are going as planned Gary.

                      Is it Nutricia who did the training?

                      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


                        #12
                        Originally posted by Ellie View Post

                        .....
                        Is it Nutricia who did the training?

                        Love Ellie.
                        No, it's Abbott, Ellie .
                        Each day is made easier with a bit of humour.

                        Comment


                          #13
                          That's great, Gary, both offer a good support at home.
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            All sounds good Gary. It puts my mind at ease for the future. I hope that you heal quickly and have no trouble with it. Lynne
                            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.

                            Comment


                              #15
                              A bit of extra info for anyone who is yet to have a PEG fitted. For some unknown reason, I thought the insertion point would be on the left side of my abdomen, level with my navel. I thought this might cause problems sleeping, because I sleep on my side. But, the consultant said she would choose the best site during the operation. Anyway, when I came round and had a look I found it was centrally placed right under the sternum (breastbone) about 2 inches above my navel. This is much more convenient as it is well clear of any waistbands or belts and doesn't interfere with sleeping.
                              Each day is made easier with a bit of humour.

                              Comment

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