So, here's the rundown:
- Nolan's renal ultrasound is normal. His kidneys are healthy.
That's the good news. The bad news is:
- Experienced nurses could not get a catheter into his bladder.
- The radiologist couldn't get any imaging done.
- He has a urethral obstruction.
We were sent to a urologist (not a pediatric urologist) because of the blockage. We asked him what was going on, and he told us, "well, he has a blockage." Duh.
The doctor asked about how far in the blockage was. I told him about an inch, but we don't have any imaging to show the location or source of the problem. I asked him what could cause it, and he said that some boys have posterior urethral valve obstruction. We don't know if this is the cause of Nolan's issues or not.
We totally found this by accident, since we were screening for ureteral reflux because of my history and Nolan's low weight. Of course, we won't know if he has ureteral reflux because we can't test for it due to the obstruction. On the other hand, his kidneys don't show any signs of hydronephrosis yet, so we are just going to watch and wait.
The blockage is very real, but we don't know the severity. He still has wet diapers, so that is a good thing. On the other hand, they had no problem catheterizing him at the age of 8 weeks for a routine urinalysis (part of the standard congenital hearing loss work-up). So it is possible that the blockage has gotten worse as he's gotten older.
Our conversation with the urologist went as follows:
Us: What should we do?
Him: That's a philosophical question. What do you want to do?
Us: We don't know. What should we do?
Him: Well, you can do everything. Or nothing.
Us: If we do nothing, what can happen?
Him: He could get end stage renal disease.
Us: How likely is that?
Him: I don't know. What do you want to do?
Us: What do you recommend?
Him: That depends on what you want to do.
ARGHHHHH! I just want a concrete plan of action. I don't want to do needless tests, but I also don't want Nolan's health to be in jeopardy.
We settled on doing monthly bladder scans to make sure his bladder is emptying enough to prevent hydronephrosis and kidney damage. His bladder scan number today was 24. Anything above 50 is considered a problem. We also have to keep a sharp eye on him- if he stops wetting his diapers it is a medical emergency.
For the long term, I just don't know what to do. Do we request a referral to a pediatric urologist? Do we do a scan to find the cause, severity, and location of the problem (this is highly invasive under sedation)? I just wish the answers were more clear-cut. Mr. adult doctor wouldn't really give us his opinion.
We are going to talk to his pediatrician again, and I want to write down some questions to ask her. If you have any question suggestions, I'd be grateful. I wasn't expecting to find this problem, but now we have it and have to make decisions. And we just don't know what to do!