Suprapubic Catheter

[Jmhirn]

Has anyone had experience with a Suprapubic Catheter? My 2yr old son is scheduled for the surgery on 12 February. His urologist is suggesting this procedure to see if it will improve his only functioning kidney since the urine is backing up into the damaged kidney. If this procedure (will be left in for 2-3 weeks) proves to help the functioning kidney then a semi permanent hole will be made into his bladder for 2-3 years. I am stressed beyond belief!

[RFL62]

IMO..this is a better option than an indwelling catheter. Less chance of infection. If an indwelling catheter is pulled out by accident it can damage to the urethra..Go with your gut feeling. Sending positive thoughts your way.

[Renal-mom12yrs]

My son was born with end stage renal disease due to missing right kidney and the polycystic left kidney. My son has had one since he was 2, today he is 12. It has work great, is easy to care for. After trasplant he would get cath every two to three hour's. Today he is back on dialisys and has to get flush with Saline solution twice a day. Is scary for the first year or so but then you get comfortable. Have you seen nephrologist? About removing the damaged kidney.

[Jmhirn in reply to Renal-mom12yrs]

The nephrologist and urologist do not want damaged kidney removed in case they would need to use some parts of it later in life to hook up his appendix to the bladder and have a valve coming out of belly button to urinate

[Momofboys3 in reply to Jmhirn]

What your doctor is referring to is a mitrofanoff (the appendix thing). My son got his at 3 years old and he is about to turn 10 and it’s worked great for us it’s frightening at first but now it’s part of our normal. He has one functioning kidney that is damaged but it doing the job for now! This procedure took his hydronephrosis from a grade 4 to a grade 2-3. The best part is you can’t even see where it goes in in the belly button!!

[Jmhirn in reply to Momofboys3]

So does he relieve himself or is there a bag? Does he play sports? Is there any limitations? How do you care for it? Oh man I have so many questions! Thank you for responding!!!

[Momofboys3 in reply to Jmhirn]

I understand we had so many questions before the procedure! Honestly no one even knows he has a health issue unless we share it with them he goes to school plays soccer and basketball swims and enjoys jumping on the trampoline. He has a normal life he just has more lab draws and drs appointments than most kids. He can void naturally or he can cath himself. He wears catheter to a bag every night just so that his kidney doesn’t have any pressure on it for several hours everyday. We take his cath out when he wakes up. Honestly it’s been a huge blessing for us. It isn’t painful at all to cath and since it’s in his belly button his privacy is maintained. He has been able to cath himself since he was 5 years old. The catheter does not stay in (except when we leave it in like at night) that’s the best part when it’s out you can’t even tell there is anything there. When he first got it the stoma prolapsed so you could really see it. He had a revision (30 minute surgery) when he was six and now you can’t see the insertion site at all. He was so excited to swim without a rashgard haha! The only restrictions are the same as with anyone who only has one kidney and that avoid activities that have a high kidney injury occurance. Honestly this hasn’t stopped him from doing anything. Feel free to ask any other questions!

[Momofboys3 in reply to Jmhirn]

Your son sounds a lot like mine at 15 months old they found that he had one damaged non functioning kidney and it had a grade 4 reflux in it. The other kidney functions but is damaged also. They removed the non functioning kidney at the same time they did the mitrofanoff. They to said they kept it in for “parts”. He was diagnosed with an undetected posterior urethral valve. It was present at birth but was missed because it was a partial blockage and he was still able to urinate.

[Jmhirn in reply to Momofboys3]

Exactly what happened to my son! We found his at 22 months! It was present at birth but undetected as well. Went to doctor at 22months and told them I think an organ is sticking out of his side only to be told he is constipated and give miralax.... finally I had enough and went in and demanded an X-Ray and then we were told immediately go to ER

[Jmhirn in reply to Momofboys3]

Thank you for your ray of light in this dark tunnel of scary process! I’m so happy to hear your son is healthy and happy and just as normal as everyone else considering CKD. Thank you for sharing!

[Momofboys3 in reply to Jmhirn]

Absolutely!! It was so scary and there was so much unknown when We first recieved our diagnosis. We never did a trial run suprabubic we went straight to the mitrofanoff about a year and a half after he was diagnosed. I will say even though it wasn’t guaranteed to help it was the best decision we could’ve made!! It has saved him from so many painful catheterizations and also reduced the fluid on his remaining kidney! Feel free to reach out with any other questions! I so wish I would’ve had another parent to talk to when he was diagnosed!! I will say he has to take a few meds and has to drink a ton of fluids but other than that he’s your crazy normal 9 year old. He doesn’t know any different because he had the procedure done whe He was so young and that’s definitely a positive!

[Jmhirn in reply to Momofboys3]

I definitely will. The subpubic cath will be put in on Tuesday 1 Feb and I’m so scared. Thank you for sharing your experience! This means a lot to me and I have tears streaming down my face as I write this. It’s wonderful to find another parent that has been through this. THANK YOU ❤️❤️