I'm looking for some mamas that might have gone through the hydronephrosis journey. I know there are some thread a few years old, but I haven't found much new.
DS2 was diagnosed (incorrectly) with severe bilateral hydronephrosis at an u/s around 30-ish weeks. Once he was born, it was rediagnosed to moderate hydronephrosis of the right kidney only. The first specialist we saw was terrible to us because I wouldn't put him on prophylactic abx without proof of reflux. I consented to a VCUG and renal lasix scan to ensure he didn't have reflux and that his kidney was functioning. We transfered our care elsewhere and that was an acceptable path with the new Dr. It was found to be a functioning kidney with no reflux, so no abx.
We agreed to follow his kidney's growth with ultrasound. A year ago, it still had not improved, but had not gotten worse. He just seemed to have a larger than average kidney that was growing at the same rate as his body. We were told his chances at this point of needing surgery were <5% (at birth we had been told around 75%). We just needed annual u/s for a couple of years, then another around puberty and we were good to go.
He's now 2 and a half. Needless to say, we were thrown for a loop a couple weeks ago when he went for his annual u/s and we were told that his kidney had more than doubled in size in the past year and we needed to do another renal lasix scan and his chances of needing surgery to remove a blockage in his ureter were at more than 50%.
He doesn't appear to be in any pain, but we were told that there is a possibility his kidney can just shut down with no symptoms so one day he will have only one functioning kidney. It was severe enough that the previously conservative Dr. said if a lasix scan were not an option, he would recommend surgery immediately.
I'm not sure what my questions really are, just hoping someone else may have gone through some of this and looking for a little support.