8 month old son with Bilaterial PKD

Hi! I wanted to introduce myself and my son. My name is Katie and my son’s name is Matthew. He was born at 26 weeks, 2 pounds 9.4 ounces. Shortly after birth he started filling with fluid and his numbers went haywire. We found out he had bilaterial PKD. (along with a multitide of other things that we wont get into or I’d be here all night) We had to make the decision to put him on dialysis at 2 days old. He satrted out on 12 cc’s 24 hours a day manualy. He spent the first 6 months of his life in the NICU. He has had 3 catheter placements, and 2 cases of peritonitis while in the hospital. He came home and two weeks later was back due to peritiontis and a gtube infection. (they put his gtube in 2 weeks before he came home) Now, 6 weeks later he has sever peritionitis, gtube still infected, and a catheter site infection. His nurses assure me its nothing I’ve done and probably started in the hospital at some point in time. It’s been VERY hard the past few days because he will stiffen up and scream uncontrolably during his drains and my hubby and I are getting no sleep. Today, while waiting to get his blood work done, I almost lost it on a woman who was also waiting who asked me if I could please get my kid to stop screaming. (I had done everything I knew to do to help him already and already felt like a bad mom without her crap!) Also, he is not draining well at all and is fluid overloaded, any tips? He has been on Ancef and Heprin for 2 nights now and his cultures did not grow anything today but his fluid is VERY cloudy and full of fibrin. He is in a great deal of pain, cant tell me where, and it’s making me very depressed. Any and all tips on anything I can do to help him or prevent this from happening again? He is on CCPD ,150cc’s , 16 hours a night, 45 minute dwells, 10 minute drains. I would GREATLY appriciate it!

Hi Guest, and welcome to Home Dialysis Central. I’m so sorry to hear about what you and your son are going through. It must be terribly difficult, and I hope you have some sources of support to help you through it.

I wish I had some immediate answers for you, but hopefully some of the other folks who visit here will have some ideas. In the meantime, you might want to check out this other thread: http://www.homedialysis.org/boards/viewtopic.php?t=944. You are not alone, others are going through similar challenges, and you can help each other.

Aside from asking the technical questions of the folks on pd I would like to invite you to another site which I co-manage. It is mainly just a support group but there are many parents there who have young children with pkd… You are welcome to join. Here’s the url. I haven’t been able to post links since getting the new Mac so… Lin.


Hello Katie,
I am sorry to hear about your son’s dialysis troubles. My son is 5 months old and on PD. He was a 32 week preemie with dysplastic kidneys. He also has a Gtube because he is such a poor feeder. My son has had 2 catherters placed and 1 case of peritonitis while in the hospital. I can relate to your frustrations!!! I have a few suggestions that might help. First, clean his exit site and catheter with DIAL soap to remove any bacteria from the skin. Second, make sure he is not constipated because that can cause peritonitis. Third, if he has a vesicostomy, keep an occlusive dressing over the PD exit site. Let me know if you would like to talk further.
Best wishes,
Stephanie from Texas