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Cookie
20th October 2011, 12:10
Hi, firstly I would like to apologise if I ramble on as it's been an emotional few weeks.
My dad is 88 and was diagnosed with MND last February. He was adamant that he didn't want the peg fitted but changed his mind last month. To cut a long story short he had it fitted and was discharged the following day even though I was told that he would be kept in over the weekend to monitor the feeding (bed/straff shortage). While he was in hosptial the feed was set to 20ml but we were advised to give 85ml which we did but a few hours after his first feed he was sick and had chronic diarrhoea. We called the emergency services as he was struggling to breathe and he was taken to hosptial. He was discharged the same day but went rapidly downhill and a few days later his GP managed to get him into our local hospice where he is now receiving palliative care. I can't believe that only a few weeks ago he was ok although very frail. He was managing to eat soft foods and drink ok. We have been told by our community dietician that the amount of liquid we were told to give him was far too much for a man of his build.
My sister and I feel partly responsible as we set the feed up and I keep thinking why didn't I question the amount of liquid considering he only had a small amount put through in hospital. I understand that this would happen at some stage but was not prepared for it to be so soon.
Can anyone tell me what advice regarding fluid levels they were given after the peg was fitted.
Thanks for taking the time to read my post.

Lassie
20th October 2011, 12:26
Hi Cookie, I am sorry to hear of your problems.
My hubby was advised 60mls of water to flush peg before and after feeds. He is still able to take a small amount of fluid by mouth in between.
Feeds were assessed by dietician on body weight which he is maintaining.
Don't feel responsible for not questioning it's a lot to take in at the time.

anngr
20th October 2011, 13:16
Hi Cookie, This also happened to my husband last Christmas, he had a peg fitted day before Christmas Eve and they sent him home on Christmas Eve, no-one told me how long the feeds should take. He couldn't have the overnight one as he couldn't lay flat enough so I was doing it through a syringe 5 times a day. I had no idea how long it should take to put through 330ml of food so just guessed it should take the same time as if he was drinking it - about 10 mins. Of course this was far too quick, it should take about an hour, subsequently he got terrible diarrhoea. It was the worst Christmas imagineable - there was no-one to phone and ask for help. I used to put about 50 ml of water through before and after the feeds. I know this depends upon weight though, he was 6'4" and 14stone, even after he lost 6 stone before having the peg fitted. Don't feel guilty about anything - we are not nurses and these things are thrown at us without any warning. I felt as though I was living in a nightmare but it is surprising how quickly you get used to doing it. I just wish I had been able to get advice from this forum then, I think advice given by people with MND or their carers is much better than you get from professionals sometimes.

john
21st October 2011, 00:48
hi cookie.
You should have had the advice of a dietician. My wife had a peg fitted in July and stayed in hospital 2 days afterwards. The dietician asked if she wanted to increase, decrease or maintain her weight and set her feed based on her response. We were shown in hospital how to feed and at home a nurse from Nutricia who supplied the feed came to visit and explain maintenance and care of the peg tube and components. Irene takes 625mls of feed at 4 meals, 3 at 125 and 1 at 250mls. The tube is flushed with 100mls boiled water before and after each meal. This keeps Irene healthy at 55kgs. We were told she should not lie down or adopt a reclining postion in her armchair for at least 30 minutes after each feed. This seems to create no problems. We were also given a couple of booklets from the hospital and Nutricia explainig everything and a contact phone number for use day or night. It seems inconceivable that nobody gave you any of these things. I suggest you have a long chat with the dietician dealing with your father and ask what on earth she/he is playing at.
Show her this reply if she wants toknow what good practice requires.

John

Cookie
21st October 2011, 14:38
Hi and thank you for replying to my post.
The Nutricia nurses did show us how to use the feed machine and how to set it all up and they were very good but it is the information the dietician gave us that I think was incorrect. The dietician advised 85ml per hour over a 12 hour period. This rate must have been too much for my Dad he is only 5ft 3 and weighed about 32kg. I'm not trying to lay the blame with anyone but I do need some questions answered. His stomach was too small and couldn't cope with it. Just 2 weeks after having the peg fitted which we thought would have given him a better quality of life we are now waiting for my lovely Dad to die. The only comfort I can find is that he is in a fantastic hospice and his last few days will be painless for him.

john
21st October 2011, 15:51
Cookie,
Hindsight is a wonderful thing but it would seem to me that your dad was allowed to lose too much weight before someone took action and arranged for the peg tube to be fitted. If feeding is being maintained now it may be that his strenghth may come back. I am sure you are aware there are different types of Motor Neuron Disease and that some of them develop very rapidly but if they can build his weight up then it does improve his chances and he may well surprise you. I sincerely hope so. So sorry for your present circumstances.

John

Cookie
25th October 2011, 04:57
Thanks for your words of encouragement but sadly Dad passed away on Sunday. John, I think you are right by saying that he was allowed to lose too much weight before he was advised to have the peg fitted. I can only take comfort from the fact that Dad died before the disease got even worse.

john
25th October 2011, 09:36
Cookie,
So sorry to hear your news. At 88 your Dad obviously had a lot of good years and I am sure leaves many happy memories.
With my deepest sympathy and best wishes for your future.

John

Lassie
25th October 2011, 11:23
Cookie,
Sorry to hear of your news. Best wishes for the future.

tilleygirl
1st November 2011, 18:38
my mother has just been diagnosed with mnd we had the same problem with the peg feeding the dose seems high we were told 35ml but hers is in the bowel not the stomach so its all trial and error at the moment are you doing the feeds with a drip or a syringe the drip goes in at a much slower rate

john
1st November 2011, 21:36
Irene is via a syringe 4 times a day with at least 3 hours between feeds. She is taking something called Nutricia Fortisips which comes in 125ml bottles. It gravity feeds fairly slowly. Irene takes 125mls 3 meals and 250mls on the 4th feed.I am not sure how it works into the bowels - never heard of that before.

John

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