Clayne is now 10 weeks old as I am writing this. He has come on leaps and bounds, he is now 59 cm long and weighs 14 lbs, my little chunky monkey.
He recently had his visit with a Nephrologist/paediatrician who said Clayne’s bloods (mainly his creatnine level for his kidneys) are improving but not as fast or as well as they would like however a recent ultrasound scan (USS) showed the outer layers of his kidneys were reducing in size but the inside has stayed enlarged. This is still worrying but encouraging as well. The same goes for his bladder. Clayne has been doing very well still passing urine but was straining at times.
I also learnt that the antibiotic Trimethoprim used for urine infections that Clayne takes at night, will continue until he is potty trained. Not that he minds I think it has become part of his bed time routine now.
On the 4th September we took a trip to Bristol for Clayne to have a cystoscopy (camera via his penis to look at his bladder and urethra), as well as a circumcision. This is to reduce the chances of him getting a urine infection in the future when we start to catheterise intermittently.
The Cystoscopy showed that the valve had grown back a small amount, and was removed. Due to no bleeding he did not need a catheter post surgery. We were then informed his bladder is looking better but as he was one of the high risk children with PUV he will still need to be monitored and we need to learn to catheterise sooner rather than later.
The benefits of learning catheterisation now is that at at his current age he will grow to find this as a part of his life. Hopefully one day the aim is to wean the amount of times we catheterise so that he won’t need our help and will be able to empty his bladder fully.
We were not prepared to see how sore he would look post circumcision, poor little guy. The care for this is easy. Cream twice a day, however my son is a little fidget so nappy changes result in me scrunching up my face and making ouch noises as I don’t want to hurt him.
Being a nurse comes in handy with all these skills, meds and treatment. But looking after my son is a whole new experience. I worry so much and I am more involved and aware of what is happening compared to my other half who is learning parts of the anatomy and inner and outer workings of the kidneys and bladder in depth.
We have to go back to Bristol in December for another cystoscopy as the surgeon would like to look without having to remove valves, to be happy and sure they have stopped growing.