External drain

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

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

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

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.

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

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