Today we met with a great pediatric urologist who has been studying Micah’s case. We learned a couple of things and have a plan for another test, date to be determined. *As a reminder, I am not a doctor and I am only trying to convey the information as we received it and try my best not to pass on misinformation.*
First, the good news! After turning 1, the chance of UTI in boys with kidney reflux goes down considerably. This means as long as we closely monitor Micah for signs and symptoms of UTI, we can take him off of the antibiotics!! This is such great news for our little boy who gets very sick from those medications.
Now, there are 2 possible issues we are worried about. The first is primary reflux. This means the problem could be VUR alone. That would be solved by ureter reimpimplantation surgery. While the reflux should not get worse over time, it may be possible that the first VCUG (a test with a series of xrays with contrast in the bladder) when Micah was 1 day old didn’t show the extent of reflux on both sides. It did show very clearly that there was no urethral blockage, so that has been ruled out.
Surgery can not be done before ruling out a neurological disorder that keeps the bladder from emptying. This would explain why the problem appears to have gotten worse with time. This would also explain why his very first and most persistent symptom has been an enlarged bladder. There may be a syndrome associated with that issue, or it may just be a dysfunctional bladder on its own. While this issue would be a long term problem, most problematic around potty training, it may allow Micah to outgrow the reflux once he learns to control his bladder on a schedule. While we would never wish for a neurological or spinal problem, the idea of avoiding a major surgery that could lead to more complications does have it’s advantages. If it is determined to be a neurogenic bladder, tests will be done to rule out spinal issues and the reflux will be closely monitored until potty training age. If the reflux does not improve by age 4 or so, reimplantation surgery may be required.
The next step is a test that measures pressure in the bladder as fluid is added (a cystometrograms or CMG). It will measure bladder size, pressure, and flow rate. If the bladder does not empty at the appropriate pressure, it is likely a neurogenic bladder. The test is similar to a VCUG. Micah will be lightly sedated and the test takes about an hour. The test will be done in Madison at the UW Children’s Hospital, but it has not been scheduled yet. Sometimes it can be months to get on the schedule, but we should know more next week.
The kidney size and function is something that was determined during development and won’t be changed through surgery or time. It will be what it will be, and we just have to do our best to protect his kidneys as they are. It is disappointing that we can’t do anything as a quick fix, but taking Micah off of the antibiotics should at least make his day to day better.
Thank you to everyone who is keeping Micah in their thoughts and prayers. We are doing our best to stay positive and the support is very comforting.