Tag: My sons PUV journey

My Son’s 3rd Surgery, And Progression.

Hello all and welcome back to my son Clayne’s journey. Clayne is now 7 months old, and the time just keeps going by faster and faster. On the 30th of January Clayne had his third surgery in Bristol.
This time the plan was to carry out a check cystoscopy (a camera inserted via his penis to look at his bladder), as well as a urine stream check….. They were unsure whether he would need valve removal or not depending on their findings.

To read about Clayne’s journey so far please refer to the above tabs (if you’re on a mobile then click on the menu tab).

I forgot to update you all on his check up with his renal consultant in November. Clayne has been diagnosed with the very early onset of Kidney disease, we were aware this was a high possibility however I was still upset and shocked to believe it would happen so fast. I think as parents we never want anything to happen to our children and I always think “it will never be us”.
On the other hand Clayne is coming on leaps and bounds with his development.
We had been catheterising for about 2 months at this point, and now it had become second nature.

In January 2019, Clayne had an USS of his kidneys to see if they were reducing in size. The results were fantastic, Clayne’s kidneys and bladder are reducing in size, his right may be larger but the reduction in size is positive. The Urologist (Surgeon) explained that the walls of both kidney’s and bladder are still thick and tense but this will probably remain throughout his life due to the damage caused by the valve in the womb.

Clayne now weighs a whopping 20lbs at the age of 7 months…… WOW my little chunky monkey.
He can now crawl, stand with assistance, and he absolutely loves to walk whilst holding our hands.

Craig took Clayne into theatre, I just couldn’t face watching my boy go limp in my arms.
The Surgeon said that there was no remaining valve tissue, or any regrowth which is amazing news, and his urine stream when tested was so good that he hosed down half of the theatre staff (that’s my boy).

I think the surgeon was genuinely shocked with how far Clayne has progressed in his condition.
For a baby to be born with the worst valve (completely blocking his urethra) to now have no valve left, have a fantastic urine stream and be as well as he is is extremely rare.
He reckons a couple more appointments with him at Bristol for a few scans and check up, with hopes to stop his antibiotics early and completely stop his catheter by the time Clayne is 1 years old.

This is amazing news for us. We were originally told the catheter could be years, and he could be taking antibiotics until the age of 3 at least.

The next step is follow up appointments for probably a lot of his life, especially regarding his kidneys now.
Within the next year we have planned two particular scans – DMSA (insertion of dye as well as a scan) for function tests. And a Urodynamics test.

To see more about my son’s condition check out the Facebook page myself and another mum have created.


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