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Thread: My dad

  1. #1
    Forum Member Katrina36's Avatar
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    My dad

    Hi all, I've put this in this thread as I'm not sure where to put it, so il apologise for it being here...

    What it is is my dad is going into hospital next week to have peg/rig put in, as a lot of you know I do have a child with one off these but obviously children and adults are different and I'm just wondering is there anything we should be prepared for and basically what to expect and how dad may feel after he has had his done?,, it's one thing to ask a child but I want to know this from an adults point of view, and for a bit of reassurance for my dad who is understandably worried about having this done.

    Also for people who have bulbar and have been sedated if it affected your breathing etc..

    Also his speech is pretty much gone now and for times when family are not there to translate for him, and he has never touched the iPad as he does not like this, has anyone communicated with pen and paper?

    Is there anything we need to have in place for him coming home that we can do in advance.

    Any advice would be welcome.

    Thanks Katrina x

  2. #2
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    I suggest you print a list out for him with statements he can point to for staff. Not sure how long he will be in hospital but maybe things like "cup of tea, with x sugars" "coffee" "drink of water" "I'm cold/warm". "I need the loo" etc. just think of things he would ask if he could speak. It sounds as if you have lots of PEG experience. I've had one for over 8 years and imagine daily care will be the same as for your son. The worry and anxiety is far worse than the actual op. Hope it goes well.

  3. #3
    Forum Member Ellie's Avatar
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    Hi Katrina,

    It’s a light sedation for the peg, so he won’t be that groggy after it.
    He’ll have a local anaesthetic at the site and when it wears off, paracetamol is usually enough.
    Just follow the aftercare instructions, you know the score.
    It’s important to tell hosp of his communication needs – do a shhet with some phrases so he doesn’t have to write everything – toilet. Pain. Thirsty. Etc.
    If he goes for rig procedure, they can put in a MicKey button.
    If he uses bipap, he can use it just before & after peg op.

    Ellie x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Forum Member Katrina36's Avatar
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    Hi Miranda, I never thought on printing out stuff for him with simple statements, that's a good idea thanks.. He's going in on Tuesday, gets it done on Wednesday then ideally they said he would get out in Friday.

    I think he's worried about how sore it will be afterwards aswell.

    Yeh my sons had one for 5 years, so aftercare I'm familiar with.

    I think your right it's the worry and anxiety of the Unknown.. Thankyou ... Katrina x

  5. #5
    Forum Member Katrina36's Avatar
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    Hi Ellie, will he be aware of what's happening? Or will he forget about it?. I think he may be worrying about pain aswell as the consultant said he needs to stay in as he will need access to a good drug cabinet for afterwards, which I think worried him, not the best thing to say to him I don't think.

    I will make sure I explain his speech problems when going in on Tuesday, I like the idea both you and Miranda have suggested with phrases with common things on them

    My son has the MicKey button so he has seen one off these which is handy I think.

    He doesn't use a bipap as yet, but was concerned how his breathing would be as he gets very breathless... Katrina x

  6. #6
    Forum Member Ellie's Avatar
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    He won't be aware Katrina, they'll sedate him first, so he'll only be awake for the cannula being put into the back of his hand.
    I think it'd be wise to mention the breathing, as he may suit a rig procedure if breathing is an issue. Are the Drs concerned or just him?

    Pain wise - give dad adequate pain relief so he's not tensing his muscles in pain. If it takes stronger meds than paracetamol, so be it.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #7
    Forum Member Katrina36's Avatar
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    Hi Ellie,, that's good to know that he won't be aware... Originally the dr had said he could have a general for this which I was surprised by, or he could be sedated, so we left the appointment thinking that everything was fine, for he to get a phone call the next day saying that the dr had given him false information and that no dr would put him under a general and that should never have been offered to dad,.. So I was told I'd have to tell him this.. He now knows he's getting sedated.. They said they will monitor his breathing throughout, he's having it done from the outside in as that's the safest way for him.... Katrina x

  8. #8
    Forum Member Terry's Avatar
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    Hi Katrina;

    It might be worth asking if he needs to be in hospital for that long. He should be able to go in on the opp day and stay overnight after for one night. Staying in hospital when you can't talk or move much is not fun! It would be good if someone her knows could stay with him as hospitals rarely provide anywhere near the quality of care.

    The main of the pain will be after a day and for two weeks but it should be OKish.

    A laminated sheet might be aloud in the operating room so he could point to words if he has any trouble. I didn't have sedation and was OK till I got hot and was unable to tell them that so they thought I was in pain.

    Love Terry

    I don't think that the opp or afterwards is very painful and a normal painkiller should suffice.
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  9. #9
    Forum Member Katrina36's Avatar
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    Hi Terry, I asked if he was allowed to go in on the morning off his op but they said no as they want him in the day before to speak to anethetist and sign consent form etc.. Also where we stay the bridge gets shut due to high winds a lot and other things and they said they would prefer him to be in the day before just incase it shuts and he can't get to the hospital and then that delays him getting peg

    It would be good if someone could stay with him but they don't do that in there apart from children's wards, between me and my mum we will be in as much as possible, so it will really be during the night when he's on his own.

    My son was in hospital for a year recently and you definately see the difference between being in for a few days and longer term in quality of care.

    I'm liking the idea if the laminated sheets, we have a laminator in the office so going to see if my sister will get some made up

    I'll let him know what real people that have had this done, how they have found it. That will reassure him.

    Thanks Katrina x

  10. #10
    Forum Member Terry's Avatar
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    If he can't really talk they will need a translater, Just a thought. Our hospital would allow my wife to stay, she didn't plan too but when she saw how they were with me and my directions that I had printed, it became obvious that they didn't have enough time to deal with me communicating through a machine and that I would be left for them to guess what I wanted.

    They did not want to read the sheets with my wife so that they understand-ed what I needed to talk etc. It was then frightening.

    I was so pleased that she stayed but she sat in a chair all night as it was too late to make her more comfortable.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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