Originally posted by Ellie
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Onwards & upwards Dina!
There are various different feeds - higher calorie, protein, fibre, fat and soya based - so I'm sure you and the dietitian will find a suitable one, though I hope you won't have many more challenging days....
Might the dietitian let you cut right back on the amount you take and at a slow rate, eg 100mls @25ml/h, and gradually increase both over a few days? You can still have Fortisips during this period to get your calories.
It took me a full week, or more, to work up to my system getting used to a full feed @125ml/h.
Best wishes to you and a 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.
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Originally posted by Ellie View PostMight the dietitian let you cut right back on the amount you take and at a slow rate, eg 100mls @25ml/h, and gradually increase both over a few days? You can still have Fortisips during this period to get your calories.
Best wishes to you and a big hug!
Love Ellie.
I'm sure it will get sorted soon, although I would rather not have any more of the "challenging" days!Dina
Trying to keep positive, but not always managing.
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At least you've help 24/7 in there Dina - although it'd be lovely not to need so much help, wouldn't it
Better to get your feeding regimen stabilised before moving on.
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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Originally posted by Ellie View PostAt least you've help 24/7 in there Dina - although it'd be lovely not to need so much help, wouldn't it
Love Ellie.
I had a meeting with a nurse from the CCG in my home area, about the CHC application. My partner, son and I all felt it went well. There will be an MDT meeting with the CHC nurse and me next Thursday, at the end of which she should be able to tell me if I am eligible. You never know, I may get home this side of Christmas!Dina
Trying to keep positive, but not always managing.
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Originally posted by shrew View PostGood luck with it all Dina, My Uncle was in hospital one to one care with dementia and they got his through for a home for him.. It does take a while
I am having to learn to be a patient patient, but it doesn't come naturally to me! Ha ha.Dina
Trying to keep positive, but not always managing.
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