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Old 11-09-15, 01:27 AM   #51
Skywalker
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Default Re: Peg feed

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Originally Posted by v wright View Post
Hi everyone
J's PEG is in and all went well! He was sedated and they said he could have come home that evening but I asked if he could stay because I was nervous of the night time with J moving around so much. I went yesterday morning to collect him and they said he'd been restless during the night. They said it was probably because of dehydration. I tried to explain that it's HD and he's like this at home but as usual no one know what HD really was. The carer had been to get J up and dressed but they could get him to move. When I arrived all I could do was sit there and wait for him to wake up. When he eventually awoke he was calm and still. I was instructed by the PEG nurse on how to care and administer the feed which is very simple. The PEG it's self is very small and clean and didn't make me squeamish at all. They have tape the tube to horizontally across to J's stomach (at my request) because I was worried with all his writhing around at night and during the day. He was lying on his stomach yesterday and everything was ok. I was reassured that it's extremely difficult for it to be pulled out. So all in all I'm feeling much more positive about the whole thing! Now I know that J will be fully hydrated and his weight/nutrition/meds will be at their optimum. J can also eat on good days. Fluids are the worst at the moment so they will all go via the PEG.
A couple of nurses were really understanding about J's condition and could clearly see that I was/am tired. They allowed J's to stay last night as well so that I could catch up on sleep and they also called social services explaining I need more help during the night. I'll call today tooÖcan't function at the moment with J's sleep patterns and behaviour at night. I'm walking about like a zombie. How does everyone manage?
Anyway back to the PEG. I'll be collecting J this morning and the PEG nurse will be coming home over the next few days to make all is well. I'll up date later on. Thank you everyone for your support. X
That's so reassuring - it's the fear of what will happen half the time.
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Old 11-09-15, 08:28 AM   #52
Cupcake
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Default Re: Peg feed

Hi V, brilliant news to bear everything went ok, and you actually had a couple of nights rest as well.

Like J, M does. It sleep at night, he sleeps downstairs now, as we can't get him up the stairs since Nov, but he is restless, even with sleeping tablets.
You are doing a great job, and maybe you can get the carers to do the PEG feed for you, a couple of the carers that come into us, had told me , they do that for other clients.

Take care and keep the good work up. Xxxxx
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Old 11-09-15, 03:29 PM   #53
Trish
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Default Re: Peg feed

Great to hear a report back along the lines of so far so good.

Like CC said, maybe the external carer support can take on the peg feed/medicine side?

As for sleep.... I found vodka and red bull gave me wings but then I wouldn't recommend that approach to anyone who doesn't have the liver of an elephant like I have/had. I will have to dig out my old blog 'Pimp my Blog' and start selling it for donations again lol. Extract below:

Quote:
Iíve taken to hitting the Red Bull hard as my Friday night/Saturday morning treat to enjoy the peace and quiet while Hubs is in bed and I do my Blog. Iíve gone through phases of voddy bullys before. I can lose a whole weekend that way. The place always looks clean though where Iíve channelled all that excess energy into tidying. And then I take a month to find things that Iíve put away forgetting where I put them.
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Old 11-09-15, 09:58 PM   #54
banda
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Default Re: Peg feed

So pleased all seems to have gone OK..apols for not posting earlier..we I guess/hope have some time before we need to face this and I find it hard and take some time to respond. xx
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Old 14-09-15, 08:45 AM   #55
Amanda Stansfield
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Default Re: Peg feed

Scary isn't it V i quite agree.......i was petrified that Chris was going to tug at it when he was in a "mood" But so far (FINGERS CROSSED AND EVERYTHING ELSE THAT I CAN CROSS!!") He's been fabulous now that he's getting the right amount of fluids I can see a difference in him! He's back to being cheeky and very naughty! Its our birthday this week so i'm taking the day off work nursing and spending it with my lovely twin who no doubt will be having a LARGE portion of Tiramsu most of which i'll get covered in but who cares he's worth it x

I wish I could have my brother at home with me but I know that I wouldn't be able to cope, looking after our mum as a child/teenager brought me down to almost rock bottom. I value the staff of Church Walk amazing people fantastic knowledge of HD I can't praise them all enough for what they have done for Chris AND me x
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Old 14-09-15, 12:23 PM   #56
Crystal
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Default Re: Peg feed

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Originally Posted by Amanda Stansfield View Post
Scary isn't it V i quite agree.......i was petrified that Chris was going to tug at it when he was in a "mood" But so far (FINGERS CROSSED AND EVERYTHING ELSE THAT I CAN CROSS!!") He's been fabulous now that he's getting the right amount of fluids I can see a difference in him! He's back to being cheeky and very naughty! Its our birthday this week so i'm taking the day off work nursing and spending it with my lovely twin who no doubt will be having a LARGE portion of Tiramsu most of which i'll get covered in but who cares he's worth it x

I wish I could have my brother at home with me but I know that I wouldn't be able to cope, looking after our mum as a child/teenager brought me down to almost rock bottom. I value the staff of Church Walk amazing people fantastic knowledge of HD I can't praise them all enough for what they have done for Chris AND me x


Really pleased to hear some more positive. encouraging experiences of PEG..........

Happy Birthday to you ......... Happy Birthday to you ........ Enjoy!

Crystal
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Old 14-09-15, 03:13 PM   #57
Amanda Stansfield
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Default Re: Peg feed

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Really pleased to hear some more positive. encouraging experiences of PEG..........

Happy Birthday to you ......... Happy Birthday to you ........ Enjoy!

Crystal

thanks sweetie tiramsu party here we come
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Old 15-09-15, 08:29 AM   #58
shiraz
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Default Re: Peg feed

Hi Amanda

HBTY!! - Go easy on the candles babes, don't want to cause a fire, coz you're gonna need a heck of a lot Glad that your brother is doing fine with his PEG - just goes to show, it all comes down to what the person concerned wants and now he's back scoffing half your tiramisu!! It's also good to hear that Church Walk are au fait with hd and giving him excellent care - counts for a lot and your peace of mind. Cheers x
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Old 15-09-15, 08:41 AM   #59
Amanda Stansfield
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Default Re: Peg feed

Thank you lol promise i won't be causing the next great fire with our candles 92 in total
I am however attending the Gin festival this weekend so i can't say that I won't be participating in the odd bit of Happy Birthday toooooooooo meeeeeeeeeeeeeee at some point in the evening a girls gotta do what a girls gotta do
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Old 18-09-15, 07:27 AM   #60
Cupcake
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Default Re: Peg feed

Hope the birthday party went well and your both had a great time.

Enjoy the Gin festival, quite partial to G & T myself. Xxxxxxxxxx
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