Kason, Kason, Kason

Our handsome guy has had some medical problems and we have been asked a lot of questions about it so the easiest way to get everything out there is to just update the good ol' blog!

Is he not one of the CUTEST boys you have ever seen?!

Kason came into this world 5 years ago and it has been a whirlwind ever since!

He is a fighter.  A fighter in every way possible!

It all started almost 2 years ago.  One day while taking him to the bathroom (we were still having issues with potty-training) I noticed that he had some blood in his urine.  I took him into the doctor and did some labs and everything looked okay, just bloody urine.  It got better and we had a few good months.  Then it happened again.  Ughh.  Now that it was the second time we had to do a complete workup. Kidney ultrasound looked good.  Thankfully!  They were initially looking for a tumor.  Everything came back okay and we were scheduled with Nephrology (kidney specialist) at Primary Children's for a consult.  That was a pretty uneventful visit.  Dr. Mauch thought he had IgA nephropathy but couldn't diagnose without a biopsy. At that point he had no other symptoms so we decided that we would continue to watch him before we put him through that.  We then had to go back every 6 months for a follow-up.  He would have some good weeks and some bad weeks.  We knew what other symptoms we were supposed to watch for so we just kept an eye on him.  We had a great summer, and by great I mean that Kason hadn't had noticable blood in his urine for like 4 months!  It was amazing!  We went back to PCMC for another follow-up in September and then we came home.  The day after we got back he started peeing blood again.  The thing with the IgA nephropathy is that he should only be peeing blood when he is sick.  Well, he wasn't sick.  No biggie, we'll just watch him.  Well he continued to pee blood.  Some days it was red, some days it looked like cola, and other days you could only tell he had blood by doing a dipstick on it.  This went on for over a month.  I am a pretty calm mom, but at some point every mom needs answers.  We did another ultrasound just to make sure that it wasn't a tumor that we just didn't see on the first ultrasound.  Negative.  Such a relief.  I had a minor breakdown the morning of the ultrasound.  I cried to Tyson that I would have been a horrible mom if he had a tumor and I didn't demand an answer earlier.  He reassured me that I had been keeping better track of everything that most would have.  He's a good husband!

 So after much discussion we decided that we needed an answer.  A kidney biopsy was scheduled for the end of October.  It went really well.  The sedative that they used made him a little crazy and we got quite a kick out of him for a little bit!  The biggest risk with the biopsy is bleeding.  We were told that he was to be on strict bedrest for the first 12 hours.  Ha ha!  He actually did pretty good til the next morning. He was not supposed to run, jump, skip, etc. for 2 wks.  That didn't even last while we were still in the hospital!  We got a lecture when he escaped out the door and ran down the hallway past the nurses station to meed Tyson and Logan!  Oh goodness, that was a looong 2 weeks!

 

The results are what they thought.  IgA nephropathy.  Dr. Mauch also said that he had more scarring and kidney damage than she was expecting.

Now you ask...what the heck is that?  Good question.

IgA nephropathy occurs when the protein IgA (helps the body fight infections) settles in the kidneys.  It causes the kidneys to leak blood and protein into the urine.  There is no cure. I have read different articles on it and each of them give different percentages on kidney failure and so forth.  We do not know what we are up against and there is no way to know.  Every person is different.  We do know that it is hereditary, but we do not know of anyone else who has it.

I frequently get asked if I worry about him and the possibility of kidney failure. I worry, but I am not freaking out...yet.  I am a little concerned that he already had kidney damage so early, but I cannot change that.  We take one day at a time.  I truely believe that he has the attitude he has because he is going to need to be a fighter.  I think that he will have to fight for his life one day and so he is just practicing now! 

We love you Kason!

If you would like to read more about IgA nephropathy you can click here.