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Thread: Unrelated Kidney stone diagnosis after starting PEG feeds

  1. #11
    Thanks Ellie,
    He has definitely improved in that he is not in pain anymore and infection is under control thankfully.
    He has been nil by mouth since Thursday last week when he was taken into hospital. They were very concerned about his swallow and organised a videoscopy which was done today. It didn't go too well according to Richard but we have not been given the results officially yet.
    There is talk of him potentially coming home tomorrow as the medical crisis is sorted and his respiratory machine adjusted to make sure when he uses it it is correct for him. It caught me a bit by surprise when they said today that he may come home as up to this point it has just been me on my own sorting things. They are sorting carers which I understand will be sorted for when he comes home but it all seems a bit quick to do that, but we will see.
    It will be good for him to be home and we will find our way I am sure,
    Love Amanda

  2. #12
    Forum Member Ellie's Avatar
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    Amanda, it's great to hear that the hospital was proactive in treating Richard - too often they are ignorant of MND.

    Although it'll be a blow for Richard if the videofluroscopy confirms it's not safe to eat and/or drink orally, he has the feeding tube and can get all his needs through it.

    It may be hard for him to accept or, based on the videofluroscopy tests, which I hope he got to see - if anything went down the "wrong way" (aspirate) he'd see it happening on the screen - it actually may be a bit of relief that he won't have to struggle swallowing any longer (probably a bit of both!)

    Aspiration can lead to pneumonia. Frequent pneumonia or a bad case of it can prove fatal to us.

    And it's good that the BiPAP levels were looked at and adjusted to suit Richard's breathing.

    The swallow and BiPAP settings can be reassessed once he's well over the infection and getting enough calories and hydration to see if things have changed.

    As for carers, grab every minute he is granted and see how it goes!

    Hope he comes home to you today or as soon as things are in place.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

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