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First night of PEG feed

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    First night of PEG feed

    Hi all,
    Firstly Sarah I hope from your original post about peg feeding you are doing ok x

    Last night was the first feed I sorted for Richard after being shown how to work the system yesterday afternoon.
    After a bit of hesitation as with anything new I got it going, even transferring him from recliner chair to bed with it, which for all you pros out there is probably nothing to even think about now :-)

    Initial concerns of leakage (realise if set up properly this can not happen) and tube blocking and kinking went uneventfully, all was well with no alarms going off through the night.
    Richard gets up several times through the night to go to the toilet which is a commode near the bed. He managed this without any extra difficulty being able to keep feed going as everything is close to each other.

    He did say he didn't sleep so well, maybe due to sleeping position or just concerns for the next new thing we are getting used too.
    He had lost a lot of weight so the amount is quite a lot I think as has to run for 12hrs at 125ml/hr giving 2250kcal

    Richard said that it was all ok except for a slight discomfort in his lower abdomen. We are hoping that maybe once his weight is stabilised it maybe able to be a less amount of time as logistically trying to sort a routine is going to be hard. I am still at work at the moment part time but I`m taking a career break at the end of this month as it`s all becoming too difficult to juggle everything.

    So positively things went well last night, hopefully tonight will be go as well, and Richard will slowly gain a bit of weight.
    Love to all x

    Well done Amanda!

    And many thanks for the report. Sounds like you both did brilliantly.

    Good luck tonight.

    Diagnosed April 2017


      Smashing Amanda, 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.


        Surprised that Richard managed over 2000 calories on his first night, Amanda;

        Well done.

        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.


          Onward and upwards for you both, Amanda & Richard!

          I too am surprised he had so much feed on 1st night, that could explain the abdominal discomfort ?

          Are you flushing with water after 8hrs or just after 12hrs? Is he taking a 1000ml bottle and a 500ml bottle of feed or one 1500ml bottle of feed?

          I'm sure he was all too aware of the tubing etc to relax into a normal night's sleep, hopefully he'll quickly get used to that. And, as you say, once Richard starts gaining weight, the feeding regime could be less regimental - 12hrs is long...

          I'm sorry, but a bit happy, that you're taking time out of work - sorry that it's under these circumstances, but happy insofar as hopefully you won't be run ragged, exhausted and so stressed.

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


            Hi Amanda

            That sounds like a good start , my pump etc is arriving tomorrow and my lovely nurse is coming to set it up

            I am looking forward to getting started !

            I hope that tonight goes well

            best wishes
            Sarah x


              Hi Everyone,

              Thanks for your replies x

              It is a 1500ml bottle Ellie and I was told to flush at the start and finish, nothing mentioned about part way through.

              Hopefully Richard will sleep better tonight, I think its finding the most comfortable position as he is not used to sleeping with head of bed raised as it needs to be, He raised the bottom of the bed a bit to make it so his legs were bent at the knees, as he has little core strength and finds himself slipping down in the bed , also on a chair when he is sat down. I think he just need to play around with his position a bit to find the best way.

              Best wishes Amanda


                Thanks Sarah,

                Will let you know. Best of luck with your start with the feed, hope all goes well.

                Love Amanda x


                  Amanda, see if Richard's OT can sort out his sitting position in the armchair, slipping down doesn't sound great for his comfort, nor for you if you have to reposition him.

                  Likewise, the OT might be able to suggest something for him in bed. I put a pillow under my knees which helps a bit, I also raise the foot of the bed.

                  The reason I mentioned flushing after 8hrs is that a 12hr feed is "unusual" to run without a flush. If, and only IF, you're up at the 4hr or 8hr mark, it's no harm to give a small flush, otherwise leave it. The feed itself is sticky (and smelly!) which you'll find out when some spills which is why flushing is recommended, not obligatory!

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


                    Hi Ellie thanks for that advise, will try the pillow and check with OT again about sitting position.

                    Richard only managed 1200ml last night. This morning he woke with pain in his lower right side towards the back.
                    We called our surgery and a doctor came out at 10am as he was in pain which was constant but kept peaking then ebbing. He just couldn't get comfortable. He felt sick but just bought up mucus which he suffers with in back of throat.The doctor checked the usual things and tested urine and now sending to lab to see if he has a urinary infection.
                    She seemed to think it was unconnected to him starting the peg feeds, and has given us antibiotics to treat like an infection.
                    Hopefully this will improve things and will be a minor setback.

                    Love Amanda


                      Poor Richard, that's all he needs

                      It is unusual to start off feeding with the full amount of feed and at the full rate of 125ml/h though - the guidlines suggest a gradual introduction if at all possible.

                      Can I ask: Is he constipated? Is he taking much water ? Would he usually spend so long in bed?

                      I hope GP finds out fast if it's a UTI or not so you can explore other avenues, if necessary.

                      Big hug.

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


                        I said to the GP that it had been mentioned to me that it was unusual to start with peg feed in the manner that Richard has. She didn't think it was anything to do with that but I will call dietician too to see what she has to say.

                        He isn't constipated if anything a little looser than usual. I`m trying to get him to drink more, but if he doesn't I may put more fluids through peg in the day time.

                        We start the feed at about 8-9pm in his chair then goes to bed about 11pm. Gets up between 9-10am in the morning.

                        Hopefully we will hear back from GP quickly

                        Love Amanda


                          Yes, I think it's a good idea to put extra water through his tube.

                          Not enough hydration will make urine more concentrated which may cause issues - 35mls of fluid per kilo of one's weight is the rule of thumb, or not less than 2 litres for a man, but double check with his Dietitian. (The feed doesn't count towards fluid intake.)

                          It took my bowels a good few days to get used to both the feed and the fact it was going straight into my stomach!!

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