Thread: Peg feed
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Old 11-09-15, 01:27 AM   #51
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Join Date: Nov 2014
Location: West London
Posts: 66
Default Re: Peg feed

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 too…can'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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