Here is the low down on Crosby's diagnosis finally. Crosby got diagnosed with Stage V Vesicoureteral reflux(VUR) on August 8th (4 months old) and I'll explain everything leading up to the diagnosis. For reference everything is staged 1-5 with 5 being the worse.
The VUR is the cause of her hydronephrosis that she was originally diagnosed with in utero at which time it was a stage 4 only on the left kidney. I will add that my OBGYN caught this very early!!! A lot of kids aren't diagnosed until they are born and actually have issues so we were lucky to able to get everything set up with the specialist beforehand.
They originally thought based on the ultrasound that her left ureter was partially blocked/twisted and would eventually straighten out. When she was born she only had stage 1/2, but this normalcy is more than likely because she was slightly dehydrated since my milk wasn't in yet. At her one month check up with the urologist she was a solid stage 2 for her hydronephrosis and the plan was to watch for UTI's, but it was likely to be out grown and to follow up at a year unless we had problems.
Fast forward about a 2 months after her 1 month check up (3 months old) She had blood in a single diaper with no other symptoms. Since she had no fever we chalked it up the hormonal mini period female babies can have while their hormones are regulating in the first 6 months of life (more prevalent in breastfed babies also). More than 48 hours afterwards she had started to spike 102 fevers (Tuesday evening on 7-25 at bedtime at this point). I decided to wait and take her to her actual MD in the morning versus ER visit.
First thing Wednesday morning we were seen by her regular MD since they know her history. They gave us bags to attach to her to catch her her pee and once we had enough we dropped it off at the lab to get cultured. Since it was the afternoon by the time I caught enough pee we didn't get results until the next morning (Thursday). At this point I was annoyed because she still hadn't been treated with antibiotics and she was miserable plus she hadn't peed in about 16 hrs at this point. So i called her urologist's office and left the message explaining what was going on and to have them call me back with a plan. Our regular MD's office called back before the urologist and they gave us a prescription which we started promptly mid morning on Thursday( 7-27) and she took that for 10 days.
Urologist did call back about lunch time to check to see if she had gotten a prescription yet and had already set up all of the follow up appointments she would need (Riley is awesome like that). They scheduled the VCUG for August 8th because they wanted her off antibiotics to conduct the test plus run another urine analysis.
The VCUG took about 30 minutes to complete. I was able to be in there with her the entire time after they double checked I wasn't pregnant and gave me a leaded vest to wear. The VCUG involved them cathing her and draining her bladder to start. Her pee was very clear when they did this, but had lots of particles floating in it. I've never seen anything like it. Then they ran dye up into her bladder and filled it completely up. The we had to wait for her to pee to see where the dye went. They did have some problems getting her to pee, so they dumped warm water on her. She only emptied her bladder about halfway when she did this, but they said they had the pictures they needed.
After this was done we had to wait for the radiologist to read the xray's and then to meet with our urologist. Once we met with the MD she pulled up all the pictures for me and explained that Crosby was in the very small percentage of kids whose Hydronephrosis doesn't resolve on its own and it had in fact gotten worse (as she had grown and things had settled into their correct place after birth). Her VUR is caused because both of her ureters come into the bladder at the wrong angle. They are supposed to come in at a diagonal. Crosby's come in a 90 degree angle so when she pees and her bladder contracts the sphincters over them don't fully close and allow the urine to back track up them into her kidneys causing hydronephrosis. Ultimately she still has hyronephrosis (now both kidneys instead of just the left one) caused by VUR.
So what this means for her long term.... Right now daily antibiotics at 1/4 the normal treatment dosage (amoxicillin 120mg). This involves us picking up a bottle every 2 weeks because the bottle is only good for 14 days. She will stay on these until surgery or until VUG resolves. Only about 5% of bilateral (both kidneys) stage 5 VUR cases resolves on its own without surgery. They wait until they are 2 years old to do the surgery. I'm not entirely sure as to why because she did say it could be sooner if she keeps having frequent UTI's although the daily antibiotics is supposed to prevent that. If she spikes a fever and we can't 100% say its caused by some other source we have to start collecting her urine to get it tested. Long term she could have issues with high blood pressure due to kidney scarring, which is another reason we want to prevent further UTI's
This flyer they gave us does a good job explaining how the urine is able to back track up the ureters to her kidneys. Also a comparison chart of what the ureters and the kidney look like depending on what stage of VUR you have. Crosby's has stage V VUR which is the far right example.