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Thread: Rig tube security

  1. #11
    Forum Member Ellie's Avatar
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    Yes Shrew, it's not unusual to do the first change in hospital.

    My husband changes my button when it's required (approx every 6-8 months) It takes less than a minute and is painless - the doctor showed him how to do it. We always have a spare in the house.

    I'm not suggesting you do Mick's, don't worry!! But it really is quick and easy and nothing for him to worry about.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  2. #12
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    Thanks Ellie. When he had it done they said he had to carry a replacement tube if we were out but we werent given one .We then had a delivery of syringes a couple of weeks after and got a time slot. I think it was last Tuesday I got a text to say another delivery was coming wednesday between 22.00 and 2am !!! anyway it came just after 3pm when I was at work and it was a box with a tube in. Must remember to take it if we go out!

  3. #13
    Forum Member Ellie's Avatar
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    Oh my days Shrew, they do like to frighten people, don't they!!!

    IDK why nor how Mick's tube might fall out I've never had a balloon fail nor a button fall out in 11 years - still, it's best to be prepared.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #14
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    !!!!!! I know it would be bad luck Ellie, especially after the infection saga

  5. #15
    Forum Member Terry's Avatar
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    Hi Shrew and Ellie;

    I have had at-least two balloons go and have heard of others that have had it pulled out. I don't know if they were pulled out by gentle pressure after the balloon had deflated or because of direct force, possibly by lifting the person after a fall, but both are possible.

    The important thing is to replace it soon after, this could be the same tube that came out. If it is a RIG then it could be made 20mm longer before going back in.

    I have know of people in nursing homes where this has happened and then gone to hospital by ambulance. A&E had no one with the expertise to replace it and after 4 or so hours the hole had closed up enough to make it impossible to insert without probably another Opp.

    Having said that, I never take a spare tube out with me but I would if I went away for a few days.

    Dvd, posted about some neoprene plug that could be inserted, it is available in different sizes to suit and would be a much easier thing to put in to keep the hole open.

    Also my last make of button tube also offered something similar but I have failed to attain it.

    I am trying to look for Dvd's old post and will update you if I find it.

    Love Terry

  6. #16
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    My husband was given one of these plugs when he left hospital after the rig operation and as we have an hour and half drive to the hospital if anything goes wrong with it (dire warnings off getting there in an hour to replace the rig) , it can be plugged open till we get to somewhere it can be replaced.

    it's really annoying as our local hospital is literally 5 mins up the road from us but were told they wouldn't be able to do it, not so sure that is altogether true.

    It does feel that everybody is out (as Ellie says) to scare us, we are both off us not to easily scared thank god but feel that some of the speacialists and surgeons we had to see before his op. really ought to go on some empathy courses though I'm not sure that would help lol, my poor husband even had to go in to the operating theater and wait there for 15 mins while they discussed over him how they shoud communicate with him because he has lost his voice as they had never come across that!!. On the plus side they asked him what music he wanted to listen to and after writing his choice down had decent music to listen too, his operation wasn't very pleasant at all but that is a different story.

    Love Mandy

  7. #17
    Forum Member Ellie's Avatar
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    If the amount of water in the balloon is kept at the correct level (you'll be told how many mls) the incidence of failure is really quite low and, even with a bit of a tug, a feeding tube or button doesn't easily pop out.

    However... if it were to happen, as Terry said, the site can close in a matter of hours, so the old tube or button should be popped back in and taped to stop it popping out again and replaced ASAP.

    In an A&E dept, a catheter can be used to keep the site open until a replacement feeding tube can be fitted. A&E depts have fast access to catheters and a similar sized one to the feeding tube should be used (12Fr, 14Fr etc) It just maintains the integrity of the site and stops the panic! Everyone with a feeding tube should be aware of this for emergencies...

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  8. #18
    Forum Member Terry's Avatar
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    It's true Mandy;

    Most hospices, care homes and night time hospitals would not have someone who would put a new feeding tube in.

    If they had done it before, (which is unlikely unless they have been a partner of someone with a feeding tube) they would be too worried about mitigation and being sowed, because of not having the proper training or the training is out of date.

    It would not bother me to put one in if I knew the person.

    Great that they gave you a plug and after a few weeks of the opp it should be easy enough to put in safely with a bit of lube.

    Sorry to worry you all but it is quite unusual for them to come out, whilst it's happened twice with me it's always been in the shower at night, when it felt a bit loose. One of the tubes was a new make and that firm does not make them any more.

    Love Terry

  9. #19
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    Thanks you everyone for your posts,

    Love Mandy.

  10. #20
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    I had a Rig. went to the loo one day sat down and my Rig popped out my tummy and fell on the floor. I was like wtf. I kid you not. they tried to get it back in but it was a no go. so rigless now and have been for fourteen months. had a nightmare getting it in as well. ended up with pulmonary embolisms then pneumonia

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