Ok, thanks.
Well brief medical history for my DS is:
Constant urine infections from 3 months old, local hospital ignored us and fobbed us off with antibiotics, never took blood tests or did any scans. May 2010 he was very ill, we begged to take him in they kept saying no he doesnt need to come in, he had a cardiac arrest on the way there. Good job we took him in anyway as if he wasnt already on the way he wouldnt have made it to be resuscitated.
He spent some time in royal manchester childrens hospital PICU and then went on to spend 6 months on the renal ward and another few months in and out of hospital.
During his stay he was found to have bilateral hydronephrosis and bilateral hydroureters. The cause of his CA was massive infection, septicaemia and high levels of potassium. He went on to have the following operations: A nephrosotomy to drain his right kidney, stents put in to his ureters which didnt wrok and he continued to get infections so as a last resort he had both his ureters brought out through his tummy, a ureterostomy. This was the only thing that stopped hsi infections. Baring in mind he would literally have infection on top of infection, he would be put on the right antibiotics after 48 hours of cultures then the sample taken the next day would show a different bug and hed need to go on different antibiotics. He built up a resistance to most of them in the end. He was once discharged all clear and fell ill again and was back within 8 hours!
He has just lived with his stomas for 19 months now. We never had any problems with them, they never got infected or sore, always worked and as much as it was a pain that he would constantly be wet and could go through 10 sets of clothes a day and countless bedding they kept him infection free and well so thats all that mattered.
Last Friday he had the operation to put his ureters back, he was in theatre for about 7 hours and the operation went really well, he had an epidural so was pain free for two days after and managed on oramorph and oxybutynin for the rest of the week.
They said he would be in 2 weeks but we managed to get him home on day 6 (hospitals + toddlers = no sleep = slower recovery) so he has now had his drains and dressings removed, the urethral catheter is gone and he just has a super pubic catheter in and he is managing on 6 hourly paracetamol and oxybutynin (muscle (bladder) relaxant) .
Today was the day we started clamping it. One hour on, one hour off.
This morning he has done his first wee in 19 months and Im very excited for him. If he continues to tolerate the hourly clamping he can go up to 2 hours on and 2 hours off on Monday then he goes back to have the catheter removed on Friday and he will be using his bladder again.
Then in a month or so he goes back to have the stents in his ureters removed and its a awaiting game ot see if his little body copes and we cross our fingers that he doesnt develop a reflux of get any dilation and more scarring to his kidneys.
At the minute his kidneys are doing well, they recovered really well, his creatinine level was 28 last week.
The next few years will show whether they can keep up with his growing body and if he will need a transplant or not.
When I fist saw his no stomas I cried, I hadnt realised how much I must have got used to them because now he looks so wrong.
Oh dear sorry for the waffle, I just realised I havent actually needed advice, I think I just needed to get some things down.
Has anyone else been in a similar situation?