September 27, 2012
Bilateral Vesicoureteral Reflux
Will was officially diagnosed with bilateral Vesicoureteral Reflux (VUR) last week. After his UTI several weeks ago, his amazing pediatrician ordered a VCUG and renal ultrasound to see if the infection was caused by an underlying issue. And it was.
So what does all of this mean?
Here's my super dumbed down explanation:
The picture above shows the anatomy of the kidneys/ ureters/ bladder. In a normal person, things flow downward out of the kidneys via the ureters into the bladder and are then expelled from the body. In an individual with VUR, urine is able to "reflux" out of the bladder and up into the ureters. Depending on the grade of VUR, it can flow all the way back up into the kidneys. People with VUR have an extremely high chance of contracting UTIs due to the urine transporting bacteria into the ureters while is flushes back up.
Will's VUR is bilateral (in both kidneys/ ureters) and primary (meaning he was born with it). His tests showed that he has grade 3 reflux in one kidney and grade 4 reflux in the other.
The main concern with VUR is reoccurring UTIs as well as scarring/ damage to the kidneys. This alone is enough to warrant action but when you add in Will's other health issues, and the fact that he will be receiving intense chemotherapy (that is notoriously harsh on the kidneys) in 5-6 months , his urologist is being rather cautious!
We met with a urologist Monday and have started Will on prophylactic antibiotics. The go to antibiotic for VUR is bactrim but of course nothing is ever "easy" or "normal" for us and Will cannot be on on that medication as it tends to lower blood counts. We don't need to give anything that could possible decrease his already low counts! So he is on the second best antibiotic for this issue. Our hope is that this antibiotic will hinder subsequent UTIs.
A DMSA kidney scan has also been schedule for early November and will let us know if any scarring is present and how the kidneys are functioning. Best case scenario is that this will serve as a a baseline, show that no damage has occurred, and two properly functioning kidneys. Worst case is that damage and/or loss of function will be identified and will need to be surgically corrected.
We will also talk surgery if he has breakthrough UTIs despite the continuous antibiotic.
The fact that something else is wrong worries me.
The fact that it is related to his kidneys, which will be stressed during chemo, majorly freaks me out.
I am pretty terrified that one of two things will happen - 1) he will go into chemo/ transplant with kidney damage and will not be able to handle the harsh chemicals found in the chemo or 2) chemo will cause damage which will cause more infections which is obviously not a good thing when dealing with a baby that has zero immune system post BMT.
Alex tells me I am borrowing unnecessary stress as we have no clue what the DMSA will show or how Will (and his kidneys) will deal with chemo but I can't help but worry about these things.
I have seen kids suffer kidney damage from chemo. I have watched a young boy struggle with daily dialysis due to side effects of chemo/ bone marrow transplant. I have witnessed sweet babies that I have read books to, hugged, and loved pass away due to kidney issues caused by transplant.
I know too much.
I have seen too much.
Kate was in relatively good health when she started the BMT process. I wish I could say the same thing for Will but, at 5 months, he is already much more sickly that Kate ever was. If it isn't high fever from a UTI, it's an ear infection. If it isn't an ear infection, it's a virus. If it isn't a virus, it's another ear infection. If it isn't the second ear infection in two weeks, it's a sinus infection.
He has literally been battling something since his first fever from the UTI.
I'm trying very hard to cling to the Word and pray for peace but, I have days where all I want to do is scream.
My heart hurts so badly as I watch my happy go lucky boy have miserable days where he only wants to be held and can't get comfortable. He has so much pain and struggle ahead of him. Why does he have to be struggling now?
Obviously no one can answer those questions but, that's where my mind is.
We'd appreciate prayer for Will and this latest setback as we navigate yet another diagnosis.