Advise needed - 6 cathetors in 19 months

To give you a little back story, my son was born with full ESRD casued by Prune Belly Syndrome. Since then, he has had his PD cathetor replaced 5 times in 19 months. They just stop working, basic explanations to why… nothing definitive. Well on July 30 of this year, it stopped working again. He was scheduled for surgery that Wednesday (Aug 5) and it was repositioned and placed back in the correct position. We were home less than a day, and again it stopped draining. So it was complately replaced again on saturday the 8th. Now today is Tuesday the 11th and again it has stopped draining.

I am so frustrated that I want to take him completely out of this hospital and have another hospital take care of him. A hospital that can get a cathetor to work for more than a couple months. Before this lastest surgery, I had a seriously bad feeling that it wouldn’t work out again, let me tell you why. The surgeon had us verify how the exit site should look. Then he told us to how he was going to insert it. Once the nurse found outwhat he said, she had the dialysis doctor show him diagrams to how it should be done. This was supposed to be a tenured surgeon that had done this surgery many times before. Talk about a confidense buster.

I am beginning to doubt the compentency of the whole hospital. There are other things as well that I will not get into in this forum as well…

Do you think I am over-reacting? Should I investigate other hospitals? I am at a loss and completly ready to give up on this place. Our poor kid has been cut on his whole life… I am ready for it to stop until the transplant.

Speaking of the transplant. When our son was born, we were told that he would be able to get a transplant at 1 and a half. . Now they are telling us it is 3!!! With the need to replace his cathetor so frequently I don’t know if we can wait that long. I do know that the Childrens in a neighboring city will do a transplant as young as 1… What are the ramifications to going to another hospital in regards to the transplant?

I know I rambled, but I am losing my mind… Any insight that anyone may have would be helpful…

Thank you .

We’re not doctors, Guest, but it does seem that the hospital you are taking your son to doesn’t seem to have its act together regarding PD catheters in infants. Each surgery is another anesthesia and another chance for infection–and, of course, the pain and fear for such a little guy.

Prune Belly Syndrome is not a common problem. There was one article that looked at whether PD complication rates were higher in children with this disease and those who had other causes of kidney failure. The authors did not find a difference. (Pediatr Nephrol. 2003 Feb;18(2):159-63.)

A few random thoughts:
– Problems with draining can sometimes be due to fibrin, a protein that helps blood clot. Sometimes heparin (blood thinner) or clot-busting drugs are used to break up fibrin in a PD catheter. Has this been tried in your son? Replacing the catheter should be a last resort, but it almost sounds as if it’s the first thing that’s tried.
– There are several different designs of PD catheters. Some curl up at the ends, some are straight, etc. If all of your son’s have been the same “model,” perhaps trying a different type might help.
– Has your son’s omentum been removed? The omentum is a fold of the peritoneum that hangs down like a curtain. Some doctors believe it can block drainage in a PD catheter, so they remove it or trim it back so it is out of the way.

Certainly if your health plan will pay, you should be able to try the other hospital–at least set up an appointment with someone who places PD catheters and see if he can review your son’s record and perhaps agree to take him on. (I’d want to know if s/he has a theory for why so many catheters have gone wrong, and what s/he would do differently).

There should be no ramifications for pursuing transplant at another hospital. Each transplant center has rules that are a bit different. Again, be sure that your health plan will cover the switch, or you could be in for an unhappy and costly surprise.