Page 2 of 4 FirstFirst 1234 LastLast
Results 11 to 20 of 35

Thread: Stomach problem?

  1. #11
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    1,669
    Oh Chrissie, I am so sorry.

    I feel so useless in that all I can offer is a big virtual hug.

    We all wish Doug the best.

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

  2. #12
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    1,916
    Hi chrissie,

    Hope Doug feels a little better and they can treat the blockage with drugs.

    Love Terry

  3. #13
    Despite agreeing to be admitted to hospital, Douglas is refusing food and medication

  4. #14
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    1,669
    I am so sorry Chrissie - how concerned are the doctors and has anyone mentioned palliative care, especially meds?

    Wishing you strength and fortitude.

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

  5. #15
    Hi, everyone
    I am with Douglas now. He is trying to sleep but nurses have had to sort him out twice in half an hour.
    I am now unclear as to why he was refusing treatment - he has mentioned his vent nurse twice but he has very little energy and cannot manage to spell out what she has to do with his food/medication.
    He is on a short stay medical ward so I am not sure they anticipated any major problems but my fear is he is giving up.
    His neuro nurse visited on Wednesday. She was the person who told him he would not be able to have a power chair and she has now told him he can't have eye gaze, which we were unaware of. Combined with the consultant who told him in September that he had 3 -6 months, which end in March, I am afraid he is going into a bad place. Please note, my memory of the conversation with the consultant is a little different and I would not consider a prognosis like that to be absolute. When she said that Doug was just getting over the chest virus and I now realise they did not expect him to survive - but he did and I don't want any self-fulfilling prophecies muddying the water

  6. #16
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    1,669
    I am writing this with the greatest respect, empathy and sensitivity but as I am not a great wordsmith, I know it won't come across this way...

    Dear Chrissie, Douglas wouldn't be the first person to take a given prognosis at literal. Some would see it as a target to beat and others could see it as having permission to let go - it is very individual and depends very much on how much the MND has taken out of that individual.

    The vent nurse may be sought to adjust the NIV settings - if Douglas is more tired, breathing may be more laboured, which often means the IPAP is now uncomfortably high and breathing is an exhausting chore. Or maybe he wishes to stop using NIV.

    If Douglas is in this frame of mind, then a hospice is a better place for him, and also for you.

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

  7. #17
    Ellie, I think you are a wonderful wordsmith.
    Oddly, Douglas has taken every prognosis literally, even though this was about the third one he has been given and he is still with us - but it goes very much against his character as it was.
    The doctor has now been and some of what is written in his notes regarding nutrition contradict what Douglas himself says. The medication appears to have been offered in tablet form with water instead of crushed in yogurt, but I had informed the pharmacy here how they should be administered on Friday morning.

    Happily he seems a little brighter now although still very tired. I think a hospice might be better for him but he really wants to end his days at home and I feel I should be able to make sure he gets that wish at least.

  8. #18
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    1,669
    If the Ward Manager/Nurse in Charge can't immediately sort out how Doug's meds are administered, get on to Patient Advice and Liaison Service (PALS) in the hospital - if their contact phone isn't displayed on the ward, ask for it at the Nurses' Station.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #19
    Thank you, Ellie��

  10. #20
    Douglas' oxygen levels have dropped and they don't seem to know why. Doctor says it will be treated as an aspiration problem. They are trying to stabilise him now and are going to adminster anti-biotics, I believe.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •