Baby with renal reflux

Hello
Was just wondering if anyone else had experience with their baby having renal reflux. My baby was diagnosised with grade 5 reflux after presenting with a sevre UTI/kidney infection at 6 weeks. It was caused by postier urethal valve with he had surgically removed. However at 10 weeks we nearly lost him as he had another kidney infection but this time it went into the blood as well. After his third UTI he had a vesicostemy created and has only had one mild infection so far (touch wood). He was suppose to get a mag 3 and dmsa however after the mag 3 they said they wouldn't do the second test because of the results of the first but they can't tell us the results over the phone. His follow up is on 22nd but now dreading whats going to be said. Has anyone had something similar?
Thanks