Asher and the Kidneys

Back in January, Asher was in lots of pain every morning when he used the bathroom after he woke up. When I took him to the doctor, it turned out that he had a urinary tract infection, and that's where it all started. At first glance, everything about it seemed routine (well, as routine as a bladder infection can be). Under the microscope, there was a trace amount of blood showing up in his urine, but the doctor was thinking that was related to the infection. At the time, I thought nothing of this and had no concern about it.

Because UTIs in boys are so unusual, a renal ultrasound was ordered just to check out the kidneys and make sure everything looked okay. Even though going through the actual process was torture (waiting room meltdown, screaming and writhing during the "painless" procedure), everything looked good and that was a relief.

Asher returned for a follow-up with the doctor, and they once again tested his urine. There was no sign of infection, but there was still blood (known as hematuria). Hmm. So they had us come back a month later, and there was still blood. At that point, they became concerned that this wasn't going away, and they wanted further testing. He had to have a hearing test to rule out Alport Syndrome, which is kidney disease that also involves hearing loss and eye problems. He actually failed the hearing test, but apparently that's not uncommon, so that wasn't definitive. His blood pressure was slightly elevated, which was also a concern but also not definitive. We couldn't fully rule it out at that point, which has left us feeling worried and uncertain.

Next up, he had to have a billion blood tests ran. I took him to the lab, where we waited for an hour, and then they needed to collect FOUR full vials of blood. This was AWFUL. Asher hated that so much and screamed and cried so much that by the time it was all done, his face was red and sweaty, and he was just a wreck. That just about killed me watching him go through that. And after all that, all the tests were negative, which was a good thing, but it sure took a lot of work to get there!

The next test involved collecting his urine for 24 hours. He had to pee in a special container, and then I had to pour that into a jug that I had to keep in the refrigerator (that's not apple juice!). Although that wasn't fun, I was just glad that it wasn't something physically painful for Asher for once! When we rushed that off to the lab, everything came back normal.

So then, Eric and I both had to go to our doctors to have our urine tested for blood to see if there was a genetic component. Negative for both.

Asher did end up retaking the hearing test and did pass, and his blood pressure has also remained normal (both good news). Currently, we have been taking him in every 3 months to just be checked out. Fortunately, there is a Nephrologist (kidney doc) on staff at our doctor's office, so we have been seeing him and that has been a great help. Asher still has the hematuria, and in addition to that, he also has had protein in his urine the last two visits, which is not good.

Could Asher possibly have kidney disease? Yes. If he did, that would eventually lead to kidney failure, dialysis, and a need for a kidney transplant. It goes without saying that this is very scary. Kidney disease can exist without symptoms for long time (usually gets worse as the child gets older), and then suddenly, your health will start to deteriorate as your kidneys fail. However, the only way to test for it is to have a kidney biopsy, which is a serious, surgical procedure. The doctor doesn't want to do that yet since Asher is healthy right now. Usually, kidney disease runs in the family, and we have no known history of it on either side. However, that doesn't rule it out completely. There are plenty of kids who have it and are the first ones in their family.

It could also be something that will simply remain the way it is right now without getting worse, or it could resolve itself. There's just no way of knowing at this point what lies ahead.

We just don't know yet. I like answers. I like to know where we go from here, but I've had to make peace with this horrible limbo that we've been in for so many months now. As the doctor says, we are in "suspended animation." It's the pits.

One thing I can say for sure is that when we go to these appointments, I'm reminded all over again about how precious life and good health is, and how I want to cherish every single moment of it. I just want to hug Asher a million times over and tell him how wonderful he is and how I love him like crazy. And I want to never forget that even when he is testing my patience to the limit.I do forget. But then I remind myself again and again.

I just want my boy to be okay. And I know he is and will remain healthy and strong. I believe it.