External drain

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  • #46150
    marions
    Moderator

    Andrea….It is so very assuring to hear that your Dad is feeling good. May it continue for a long, long, time.
    All my best wishes are coming your way,
    Marion

    #46149
    jemima
    Member

    Andrea
    Sorry to hear that your Dad is having problems with his drain again. Maybe it is just because of his lower food intake. Is he managing to drink some of the high calorie shakes and things at least ?
    I have been away and am only just catching up with everyone’s news. Your dad and your whole family are doing so well, and 4 months ! …. time and again we have to say it ‘ the doctor’s can’t tell’.
    Sending you hugs and best wishes
    Jemima

    #46148
    jennifers
    Member

    Andrea – your Dad IS amazing, and so are you. He’s lucky to have you on his side. Thank God he’s in no pain, and still doing well. I will keep praying that it continues this way for you all!!

    Thinking of you and your precious Dad!!

    Jen

    #46147
    nur1954
    Spectator

    Andrea – The most important thing is that he is doing well and has no pain. He sounds amazing! – Nancy

    #46146
    andie
    Spectator

    Latest Update on Dads drain.

    It has been flushed again and the DN said the tube isn’t split. Dads bile output has gone from 200ml per 24hr to 100ml per 24hr the last few days. Whilst it is still flowing they don’t want to keep flushing it. Last time it stopped flowing completely. They think because Dads food intake is much less then this is why his bile output is less. He is still eating but since Christmas he eats half of what he used to.

    I contacted the Macmillan Nurse at the hospital and she also agreed that the lack of bile could be natural deteriation of Dads condition, especially as he has no fever, chills, high temp which would indicate an infection or start of blockage. Luckily still no pain, which I am always thankful for.

    We are now 4 months since were told Dad had 3-4 months and he is still doing amazingly well, I am so proud of him. He never complains, I love him so much, he is amazing.

    Best wishes

    Andrea

    #46145
    jennifers
    Member

    Oh Andrea, I’m so sorry you are having to deal with this. I really hope he will change his mind and allow for the tube change – it will help him feel better, and in all reality, will help keep him healthy longer! The risk of infection and so many other things will increase if he keeps a tube in that needs changing. Dad’s has always been a day case as well… in and out in a few hours, with no pain.

    I hope a chat with the doctors will help your parents realize that it’s something that needs to be done. Thinking about you today… good luck with convincing him. So thankful he’s still not in any pain!!

    Jen

    #46144
    nur1954
    Spectator

    Andrea – My son had an awful time with drain leakage. He had his exchanged and drained time after time. Sometimes, the way the dressing is set up on the outside can make a difference. I’m sure your doctors/nurses do the right thing but one thing they always stressed to me was making sure the tube had a lot of gauze pads folded and tucked around it to sort of lift it up so it wouldn’t kink (which would cause it to leak). I used to change John’s disk and dressing by myself almost every day and got to be pretty good at it. I feel so bad for your Dad….totally understand how he is feeling. It’s so hard on the patients and the patience!!! Take care – Nancy

    #46143
    lainy
    Spectator

    Hi Andrea, so sorry you are all having to go through all of this. When Teddy had the drainage tube he had it exchanged every 6 weeks. The reason he had to have it done in the hospital is because they need the machine (forgot the name) to guide them while they are inserting the tube. They would also give him a twilight sleep to do the exchange. He felt nothing at all and was in and out in a couple of hours and came home. Perhaps Dad’s dotor can have a talk with him? It is understandable for dad to feel as he does. The CC patient puts up with so much that I am sure the time comes when they feel they have had enough. What a blessing, though that Dad is not in any pain.

    #46142
    andie
    Spectator

    Barbara, Thank you for you kind words.

    Margaret, it does leak from where the hole leaves his body but it is also leaking around the disc that the tube is fitted on ??. It flushed much easier yesterday as the nurse said the day before there had been some resistance?. Dad had his usual 100ml in the day but over night it has stopped again. He ususal collects 100ml overnight too making 200ml per 24hours. We can’t understand why it is stopping flowing at night. He is due a tube change as he has had it 4 months. At the time they didn’t think he would still be with us to ever need a tube change.

    Both parents are getting very upset about it and I just don’t know what to say or do. I have mentioned the tube probably needs changing but Dad said he isn’t going back in hospital so unless they can do it at home it won’t be done!! I’m hoping he will change his mind but Mom isn’t helping the matter by getting upset and saying if he goes in hospital he may not come out. I think i’m going to ring tomorrow and see if it would be a day case as if Dad knew he hadn’t got to stay overnight then i think he would go in.

    Best wishes

    Andrea

    #46141
    mlepp0416
    Spectator

    Andie:

    Is your dad’s tube leaking around the ‘hole’ in his side when they flush it? If so, that is ‘normal’. And actually that is good because then the flush is getting all the gunk out side of his body. Gunk is the old bile that kind of collects around the tube. I thought I read that your dad has had the tube for quite some time now, so it is possible that a tube exchange is in order. My husband has his external drain tube changed out every 4 weeks, and you can reassure your dad that it’s not a major procedure, take only about 10 minutes to actually exchange the tube. They thread a wire up inside the original tube, pull the old tube out and tread a new tube over the wire, pull the wire out and stitch the new tube in place. If they give him a general anesthetic, then it’s a 1 hour recovery time. Tom has had it done so many times that they don’t even put him under any more, so his total time now is less than an hour.

    When they flush your dad’s tube he should be in an upright position so that the liquid can run out of the hole, else everything is pushed back into the liver. The flush is to keep the drain holes open.

    Hugs,
    Margaret

    #46140
    roma35
    Member

    Andy, that would make sense that maybe the tube split. My dad had 4 stent changes and one of the times the stent had cracked. He never had an external drain, but I wish he did because he had so much fluid inside of him and the build up made his abdomen swell like a women 9 months pregnant with twins and he pain was horrible.
    I totally know what you feel like with your dad not wanting to go back to the hospital, the last few times we had to go, my dad didnt want to…he went but it was heartbreaking. He, too, was fearful hed end up having to stay, or somehow a procedure would be done that would cause more pain and discomfort.
    Its great that your dad is pain free!! your an awesome daughter, and Im certain he knows he is lucky to have you going through this with him and your mom.
    xo
    Barbara

    #46139
    andie
    Spectator

    Well the drain is playing up again!! The nurses have flushed it but it is still not draining like it should, they are coming in again later to flush again but they have made Dad an appointment at the Liver hospital next Friday, which he is not very happy about at all!!

    They think the tube has split because when they are flushing it is leaking where it shouldn’t. I have told Dad that he is due for it to be changed but he doesn’t want to go in hospital again, he is scared and so is Mom. It is heartbreaking to watch and see the fear on their faces. They just want to be left in peace and are fed up of the nurses and now the thought of a hospital stay.

    The good news is that he is still pain free, something I pray for everyday and am truly grateful for. And I must admit after the nurse mentioned the hospital I hadn’t seen so much fire and determination in him, pity it was for the wrong reason, I really hope he changes his mind and will go to his appointment.

    Best wishes to all

    Andrea

    #46138
    lainy
    Spectator

    Hi Andie and I am so glad dad is doing better. His diet reminds me of Teddy. It got down to baked potatoes, soups and scrambled eggs. He also did well with spaghetti and comfort foods like stewed chicken. Hope this good news continues!

    #46137
    mlepp0416
    Spectator

    Andrea:

    My husband Tom has had an external drain now for over a year and his interventional radiologist (IR) wants it flushed 1 x per day, along with a bandage change. Bile gets ‘sludgy’ and without the flush it tends to clog up the holes in the drain. With Tom’s tube his IR even modifies the part of the tube that is in his liver, adding many more holes in it, so that it plugs up less often. He currently goes in for a tube exchange about every 4 – 6 weeks, and we are now doing them about every 4 weeks to lessen the chance of infection since he’s had three really bad ones now.

    As part of my process for flushing the drain, I first use alcohol swab to clean the line, then attach the flush, let it drain out onto a gauze pad, then use alcohol swab again and put the cap back on. I then remove the bandage, clean the wound with a antiseptic – using q-tips to clean the gunky bile out of the wound (w/ antiseptic on it of course and rebandage, using 4×4 gauze and covering with Tegaderm film. Using this method has worked for over a year and he has never gotten any sores around the opening for the tube – in fact, his doctors have often complimented me on how good the site looks. Bile can break down the skin and cause other complications….but Tom has not experienced any of that…thank goodness!

    In fact we just again asked the IR if we needed to continue flushing the tube on a daily basis and his answer “Yes, by all means! That is part of the reason that he is doing so well because that flushing is keeping the tube open longer than it would be otherwise”…..so we will continue (even though at times it seems to be a pain in the a**).

    Please don’t focus a lot of the 3-4 month prognosis….Case in point, Tom’s original oncologist with the VA gave him 6 months, with no other options. We did not listen to that and sought other opinoins. After radiation and first oral chemo, then IV Chemo he is still here and in fact has started the 13th month of life! Has it been hard? Yes. Lot’s of bumps in the road such as weight loss, etc. But he is still here and going strong. Enjoy every day with your Dad, build those memories. When he is having a good day, take advantage of it and try to do something special. On his bad days, just spend time with him, watching TV or just talking – sometimes it’s good just to sit there and say nothing! I know that Tom’s chief complaint is that his two children do NOT spend hardly any time with him and right now he needs that. I’ve tried explaining it to his kids but they just don’t get it.

    Prayers are coming your dad’s way from Wisconsin!

    Go with God and KEEP KICKIN’ THAT cancer.
    Margaret

    #46136
    jemima
    Member

    Hi Andrea

    Mmmmmmm, your dad’s food choices sound just like mine when I am feeling unwell. Real comfort food and if it’s what makes him happy and he can eat it then that’s great.
    I am so pleased that he is feeling much better and that mentally he sounds better too.
    As the others have said don’t think about how long, just enjoy all your time together. The doctors have been wrong before….
    best wishes to you and your family
    Jemima

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