Baby on PD?

[Mhannah]

Hi! Anyone have experience with a baby on PD? Our 2 week old just started and the catheter has already clotted and we’ve been having issues. Trying to see what others have experienced and what to be prepared for. Thanks.

[Dare2BU]

Hello- My son had numerous problems with this when he was a baby. He is now 11 and tranplanted, but I know what you are going through. He had fibrin clogging his catheter all the time. It got to the point he had to sleep in our room because the machine would beep all the time when he was trying to drain. Try truning him/her on their side and see if this helps. We had to try all kinds of positions with him to figure out what worked and it wasn't always the same position each time. I would like to tell you it gets better, but after months of sleepless nights, we had to have the catheter replaced. We did not have any trouble after it was replaced. He continued on with dialysis until he was 3 1/2 year old and then he was transplanted. I hope this gets better for you. Take care.

[Mhannah]

Thank you for sharing this! They’re just trying to pull fluid and paused dialysis for today. The surgeon said they may have to try a bigger catheter?

[Legomomma in reply to Mhannah]

Yes, there’s different sizes and sometimes moving the position can make a huge difference too. Unfortunately there will always be alarms for something it seems. My daughter did PD for five years and I never slept a whole night that whole time! 😂. Hope they figure something that helps. As my daughter got older (around 4 yo) she needed an adult size catheter with a wider diameter tube and bigger holes to help with the fibrin.

[AHP2018 NKF Ambassador]

My daughter did PD at night for six months when she was a baby. It was very challenging for us. She was receiving hemodialysis every day at the hospital and then doing PD at night because of her rare condition. Draining was an issue, as was vomiting when she was being tube fed at the same time. I agree with DARE2BU that it was a very challenging time when we hardly slept because of alarms and worries. We tried lots of different things and eventually figured out how to make it work. She also (thankfully) grew large enough for her transplant so we could put both types of dialysis behind us. You are not alone. HANG IN THERE!!! My daughter is now almost 14 and those difficult days are distant memory now.