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[Carbonomega]

My son was diagnosed with Posterial Urethreal Valve which led to chronic kidney disease. He’s had multiple surgeries and he is now in the process of increasing medication dosage and getting Catheterized (every 3 hours per day). This has been hard since his kidneys have been decreasing and he is not accepting the catheter (he’s almost 4 years old). I am hoping that this will help me process this information and get some great advice/guidance from others. TY!

[BearMama0321]

Hi there! I don’t have experience with PUV but my son is 5 and has stage 3 CKD due to reflux nephropathy and a uti that sadly went undiagnosed when he was a baby. He’s had surgery to help correct the reflux; no home catheterization but I can imagine just how stressful that is for your entire family.

Let me know if you’d like to connect on CKD in general. There are so many different causes and management strategies when it comes to pediatric CKD but one thing we can all relate to is the fear, worry and stress — for sure.

In terms of catheterization… does your nephrology unit have child life specialists to help him cope?

Good luck regardless; I’ll be sending the very best vibes your way.

[Carbonomega in reply to BearMama0321]

Hi, that is a good suggestion to connect with the child life specialist!

I will be more than happy to connect regarding the CKD in general!

Thank you for your feedback!

[MotherofBarbearians]

in the beginning I visited my urology office and one of nurses helped with catheyerization in the beginning when I needed some extra support.

Can you separate out the challenge? Ie is the difficulty from body autonomy or discomfort? Is the difficulty on your end in feeling confident and sure of yourself?

I was terrified in the beginning that I was going to hurt him or damage his parts somehow- it took a lot of practice and now I can catheter him while he sleeps in dim light no problem.

Does he use a nighttime catheter or foley as well?

[Carbonomega in reply to MotherofBarbearians]

I believe it is a mixture of both: It is body discomfort and all 3 of us parents NOT feeling confident and comfortable.

He is not comfortable with the catheter going in and out (he is ok with it in and not moving and draining) we are like you said just terrified we are going to damage his parts.

The goal is to increase from 2x’s per night to every 3 hours… and overnight cath!

[MotherofBarbearians in reply to Carbonomega]

The best advice I can give is to be patient with yourself and know that the cath will not hurt him. I took my son in to urology with his catheters and had an extra “tutorial” from one of the nurses. It was helpful.

The more confident and sure you can be in yourself, the easier it will be for your son. Hard truth. When I was panicked and unsure, nothing went well.

Just do your best, lots of us moms and dads had to go through the same- and we have!

[Carbonomega in reply to MotherofBarbearians]

Yes, I am starting to feel a lot better. I am definitely going to take you up on your advice!! I feel like we got this now