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paris
7th May 2012, 12:35
Hi everybody, just need some advice. My dad is due to have the PEG on Thursday, we have been told that the operation will be Friday and he will then be allowed to go home at some point over the weekend hopefully.

I am worried about how he will be feeling afterwards - will this procedure knock him? Will he feel poorly afterwards?

My mom and I also have some anxieties about his stay at the hospital. She will be up and down throughout his stay and I will be staying in Stoke to be close by. There are a few things we are worried about - 1) he cannot talk so how will he ask for the toilet in the middle of the night 2) he cannot turn over in bed or pull duvet up anymore so how will he get comfortable?

They have mentioned an NIV as well during his stay that he will take home with him.

Just looking to relieve some anxiety really - any advice/information would be much appreciated. So worried about him and how he will be cared for :(

Paris

Irene
7th May 2012, 13:31
Hi Paris dont worry to much about this or you will make yourself ill.My husband John had the peg fitted in August last year and I had all the same anxieties as you have,he cant speak or do anything for himself and I was really worried about him.But the staff in the ward were well aware of his problems and he was well cared for.He had the peg fitted around 10am and was happily sat waiting to see me at 2pm when i went in for visiting hours.He said it was a bit tender but didnt need any thing for pain.They gave him his first feed the following night and hes never looked back.He fought having the peg for 12 years and now he tells everyone he wishes he had done it years ago because he feels so much better getting the extra nutrician hes needed.I hope this helps ease your worries and I hope everything goes okay with your dad xxxxx Irene and John xxxx

paris
7th May 2012, 14:17
Thank you for the reassurance.
How long did your husband stay in hospital for after? Does he now use the peg all of the time or is he still able to eat soft diet? My dad is still managing soups and blended foods.

Thank you again for your response.

pete
7th May 2012, 15:06
Hi Paris,
Just want to wish your Dad all the best for Thursday, and give my best to your mom, I can guess how worrying it is for you all ,but reading many posts it isnt as bad as it sounds ,and if it helps your dad with his nutrition, all the better ,so we will be thinking of you chin up folks ?

Warmest regards

pete

Ps Is Roy having it done at the QE or Stoke Hospitals

Irene
7th May 2012, 15:46
seem to have lost the post i just sent ,sorry about that it may appear twice now.Anyway here i go again John was in hospital two weeks but only because he got an infection but nothing to do with the peg so please dont worry about that.He still enjoys food and so he does still have a soft blended diet he also likes his cups of tea.I feed him and he really enjoys still being able to eat a bit of something.I put a feed through as and when he wants it or I think he needs the extra and hes really benefitted from the extra nutrician he gets from the peg feed.You will soon fall into a routine and do things how you and your dad feel are right for you.John,also has a travel pump which comes in a small rucksack so when we travel over to southern ireland by ferry he doesnt have to bother with food.I just connect him up and away we go.Its very discreet and doesnt really make a noise so its ideal.Dont know how we managed before the peg.I wondered how we would manage but I was shown how to put the feed up and how to gte it running through etc as well as how to keep everything clean and I must admit I was a bit worried about it all but its just so easy and within a few days we were doing it like we had been doing it for years so please be assured you will be fine and your dad will start feeling much better once its all done and up and running xxxxx hope all goes well for him on thursday xxx Irene

24/7
7th May 2012, 16:43
My husband suffers from mnd since 2002.he had the peg tube fitted in 2008. I was worried like you sine he needs help with turning in bed and had got minimum movement. The hospital allowed me to stay with him over night so that I could help when needed. It went well. You might try ask for the same if worry.
Good luck,
24/7

pete
7th May 2012, 17:04
seem to have lost the post i just sent ,sorry about that it may appear twice now.Anyway here i go again John was in hospital two weeks but only because he got an infection but nothing to do with the peg so please dont worry about that.He still enjoys food and so he does still have a soft blended diet he also likes his cups of tea.I feed him and he really enjoys still being able to eat a bit of something.I put a feed through as and when he wants it or I think he needs the extra and hes really benefitted from the extra nutrician he gets from the peg feed.You will soon fall into a routine and do things how you and your dad feel are right for you.John,also has a travel pump which comes in a small rucksack so when we travel over to southern ireland by ferry he doesnt have to bother with food.I just connect him up and away we go.Its very discreet and doesnt really make a noise so its ideal.Dont know how we managed before the peg.I wondered how we would manage but I was shown how to put the feed up and how to gte it running through etc as well as how to keep everything clean and I must admit I was a bit worried about it all but its just so easy and within a few days we were doing it like we had been doing it for years so please be assured you will be fine and your dad will start feeling much better once its all done and up and running xxxxx hope all goes well for him on thursday xxx Irene

Hi irene and John,

Sorry to but in ,but reading your post has made me think about having mine sooner rather than putting it off, as we men do ,Oh well thanks again for posting such a usefull post

Regards

pete & Lynne

JONESY
7th May 2012, 20:14
I am due to have a PEG fitted - been a bit delayed because of a holiday and weddings. I am eating relatively well still but hard work and have lost weight. Also aware I don't drink enough and chronically a little dehydrated. Peg will mean I just eat for pleasure not because I have too. Incidently, beer seems to be the easiest liquid to drink!

Irene
8th May 2012, 11:48
Hi there Pete my advice is go for it get the peg in sooner rather than later,it does make a difference.If you are too tired or having a bad day like John does you can still get what your body needs through a feed.Its ideal for extra fluids to keep you hydrated as well.Its worked wonders for John. xxxxxx irene xxxx

Steve Corfield
8th May 2012, 17:32
Hello Paris, Is your Dad having the Peg fitted at Stoke City General? If so you have no worries about communication problems. My wife who has had MND for over 4 years had hers fitted there and as just had a spell in the NIV unit. My wife cannot speak but the staff are absolutly brilliant taking the time to help her spell out her needs using a alphabet sheet. I hope it all is ok Thursday.

miranda
8th May 2012, 19:29
I had my PEG fitted 4 1/2 years ago but still have not needed to use it. I have maintained my weight and eat a soft diet now that I cannot chew. I can still manage to drink OK but find water is the most difficult liquid to swallow. Paris - hope it all goes well for your Dad. Pete - you sound as if you are nearly there. Good luck Jonesy.

pete
8th May 2012, 23:05
Hi there Pete my advice is go for it get the peg in sooner rather than later,it does make a difference.If you are too tired or having a bad day like John does you can still get what your body needs through a feed.Its ideal for extra fluids to keep you hydrated as well.Its worked wonders for John. xxxxxx irene xxxx

Hi Irene,

Thanks for the advice , i am getting to the point i think i need to get it done , Best wishes to you both hope John doing ok these days ,mind you he has a really good carer

Regards
Pete xxxxx

paris
9th May 2012, 19:16
Hi everybody - thank you all so much for the replies.

Irene - you have reassured me and now feeling ok about tomorrow.
Pete - yes my dad is having the procedure done at Stoke

My dad can still eat his soups and blended foods so hopefully wont need to rely on his peg too much, i think its important not to take away the things he can still do so maybe just use peg for drugs and extra nutrition like youve all mentioned.

I think your all amazing on here taking the time to give advice - take care everybody and ill update you all when I get chance :)

Irene
9th May 2012, 21:14
Hi Paris we will all be thinking about you over the next few days hope it all goes smoothly xxx Irene

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