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    Hi Dina

    Wishing you the very best. Sincerely hope you have all the proper care you need ready and waiting for you when you return home, also wishing you comfort, and peace of mind.

    Much love
    CCxox

    Comment


      Hi Dina,

      I hope your meeting as well as possible and there’s some consensus as to what happens next.

      The mental impact of such life changing disabilities is very challenging indeed and can drain every last drop of self-esteem from a person.

      Positivity isn’t always achievable in these circumstances. Everyone deals with things in their way and at their own pace, nor is there a right or wrong way to cope with losing one’s mobility, independence and, dare I say, identity. I know I struggled with idea of the latter - I was fortunate to have responded well to counselling.

      Big hug to you.

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

      Comment


        Hi everyone,

        Had a meeting with the social worker today, which turned into a mini discharge planning meeting. The result was that it was agreed that an application would be made by the hospital for Continuing Health Care funding...
        Dina

        Trying to keep positive, but not always managing.

        Comment


          Hope that gets sorted soon Dina;

          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.

          Comment


            Hi Dina,

            Good to hear that the hospital is submitting an application for CHC funding and hopefully it will be approved quickly.

            I hope everything is going OK with your new feeding tube. Do you have to wait a certain amount of time before you can start using it?

            Love Kayleigh x
            Last edited by Kayleigh; 11 September 2019, 13:24.

            Comment


              Good question Kayleigh, I have been wondering the same thing.
              Love Sheila x

              Comment


                Kayleigh and Sheila,

                Once the feeding tube is in place, it needs to be at least flushed through with water every day.

                Some people will use it for feeding from day 1, many won't use it for feeding for some time, but may use it for extra fluid and/or meds, or not at all (though it still must be flushed daily)

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

                Comment


                  Hi Kayleigh and Sheila,

                  I started using the PEG for nutrition 2 or 3 days after it was fitted. At the moment I am having bolus feeds to supplement what I am eating and also to make sure that I am properly hydrated. That flexibility suits me at the moment. I think I am near the point where I will need to have my medication through it, as well.
                  Dina

                  Trying to keep positive, but not always managing.

                  Comment


                    Good to hear from you Dina.

                    Is your digestive system tolerating the bolus feeds well?

                    I hope you're comfortable.

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

                    Comment


                      Originally posted by Ellie View Post
                      Good to hear from you Dina.

                      Is your digestive system tolerating the bolus feeds well?

                      I hope you're comfortable.

                      Love Ellie.
                      Hi Ellie,

                      Actually I am finding the breakfast bolus is making me feel overfull and nauseous. They are reducing the volume of water to see if I can tolerate it better.
                      Dina

                      Trying to keep positive, but not always managing.

                      Comment


                        I thought as much Dina

                        Can I ask how much of what you're getting and do they push it in with syringe plunger or is it gravity flow?

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

                        Comment


                          Originally posted by Ellie View Post
                          I thought as much Dina

                          Can I ask how much of what you're getting and do they push it in with syringe plunger or is it gravity flow?

                          Love Ellie.
                          I've been having 200ml of water, morning and evening, together with a Fortisip with fibre in the morning and a Fortisip 2cal in the evening using a syringe plunger.

                          We are tweaking the regimen, both quantities and times.
                          Dina

                          Trying to keep positive, but not always managing.

                          Comment


                            Hi Dina,

                            Been thinking about you and hope you're feeling more comfortable soon. I also hope you're being well looked after in hospital.

                            Love Debbie x

                            Comment


                              And maybe go a lot slower with the Fortisips too - if you don't need to be tube fed right away, you've the luxury of taking time to get used to new food. I agree that 200ml water at the same time is a bit much.

                              It's not unusual for the stomach to dislike feed pushed directly into it, bypassing the normal oesophageal route where saliva starts the digestive process, which you're missing out on. (Keep an eye on the bowels too )

                              After my PEG procedure, in hospital I started off being given 25mls of Fortisip at a time and gradually building up to a whole bottle - woohoo! Then, after a week, the dietitian and I decided to switch to using a pump to deliver my feeds and, again after starting off slowly, that's what I use everyday.

                              You'll get there Dina, it does take a few days though.

                              Good luck,

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

                              Comment


                                Originally posted by Deb View Post
                                Hi Dina,

                                Been thinking about you and hope you're feeling more comfortable soon. I also hope you're being well looked after in hospital.

                                Love Debbie x
                                Hi Debbie,

                                Thank you. I'm doing ok thanks and the team on the ward are great.
                                Dina

                                Trying to keep positive, but not always managing.

                                Comment

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