At Lincoln's 2 week visit our doc wanted to set up an Ultrasound to check his kidney's. I guess that's protocol for any subsequent children for VUR siblings. So off we went to an ultrasound a couple days later. I wanted to have him asleep because any sort of movement can make measurements off and I didn't want to do it again or have to do further testing because images were "blurry." So I fed him before I left for the hospital. When we got there I unbuttoned everything and swaddled him in the waiting room. I put him to sleep before our name was called and he snored through the whole thing.
Our doc called us the next day and said he had bilateral hydronephrosis (water on his kidneys). Which prompted instant discussion about a VCUG. I said no way. She was fine with that and said we would discuss it at his 2 month appointment.
His 2 month appointment came along and she realllllly wanted it done. I knew she wouldn't back down and we wanted answers too...but it was NOT a pleasant experience with Joelle. So I consented. And off we went to that. This is his infant torture chamber device. He is strapped to the board, they insert a catheter and dye, take images and turn the board (so he feels like he's falling but isn't really..) so they can get images of the sides of his kidneys too.
While she was doing it, I could see that it was really bad on one side but didn't look so bad on the other. They called back the same day and told me bilateral grade 3. I didn't understand how that could be but she said she was referring me to a nephrologist and she could better explain it. When DeVos called to make the appointment I requested the doctor that hands out medications the least. I knew that with his being on both sides I would be fighting an uphill battle. She set me up with a 1:45 with a male doctor "who is the most popular in the clinic." Oh great. Then my paperwork arrived and it said 2:00 with a female doctor. I didn't feel like hassling with something that was a 15 minute difference so I just planned on 2:00. I did my research and there have been a few articles out stating that being on prophylactics doesn't help, in the long run. I went in with lots of questions and she spent lots of time with me. She showed me all the images and you can see how bad it is on both sides, looking at the right views. She said she would actually diagnosis him with grade 4 on one side and grade 3 on the other. Her preference for treatment was meds until he was potty trained. She said they just published a study (the River Study) that showed that children had fewer UTI's with fevers while on prophylactics. When they get the fever is when it starts damaging the kidneys. I still wasn't comfortable putting him on meds because of all his gut issues and I explained all that too her. She didn't think I was crazy and actually agreed to try it my way. She said if he starts getting UTI's we are going to be having very different discussions. I'm not very excited with the grade 4 diagnosis because that starts discussions of surgery. The doc did say they start thinking about surgery at grade 4 but doesn't want to talk about that until he is older. It could get better and he isn't having any problems...yet. I'm convinced it was a total God thing that his appointment got switched to the female doctor. There are lots of accusations of negligence in the VUR world with non-medicating. I was totally prepared to either caving or them telling me I would fry his kidneys. Now to pray he doesn't get a UTI!
Pardon my OCDness as winter is coming and that brings along the Christmas cheer of germs. The SECOND he gets any kind of fever I have to take him in to get cathed. And if you have ever had to watch an infant get cathed, it's not enjoyable. So far the kids have been sick 3 times (with colds) since he has been born and he has managed to stay clear of it all. I tell them they are NOT allowed to touch him and there is constant yelling of "Wash your hands!!!!!" after people blow their noses.
Pray for no UTI's and continued agreeableness of his nephrologist/urologist/pediatrician!
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