What Color Will It Be Today?

Ever since Ethan was diagnosed with Nephrotic Syndrome we have had to daily test his urine with special sticks called Albustix. This measures the amount of protein in his urine, if the stick changes color, we know that he has protein and a relapse is coming or occurring. When Ethan was first diagnosed it was very hard to get an accurate reading, as Ethan was still in diapers. 

Essentially, my days were spent following Ethan around with a cup, waiting for him to pee. The pee could not touch the ground, or the reading would not be accurate. To be honest, those were very hard days, and I am so thankful that Jeff's parents and my parents helped us out as much as they could. But the daily testing was my job and until I got a sample, our day was spent waiting!!!

As Ethan got older and became potty trained, testing became much easier. Although, he still does not wake up needing to go the bathroom, now I can make him... Who would have thought that a simple color on a stick can change your whole day. I don't think I can fully explain to you the anxiety that we daily face as we wait for Ethan's sample, wondering, What color will it be? Will he be negative, a trace, or overnight has significant protein come. Sometimes Ethan can be negative one day and full on high protein the next, for no apparent reason. Sometimes Ethan is getting sick, a fever almost always brings on protein for him. Everywhere we go, these precious sticks must follow, holidays, overnighters, and the results carefully documented in my trusty notebooks.

 Last week, Ethan came down to breakfast after he had left me his sample. He was very worried, he said" Mom, the color doesn't look good", I think I might have to go back on prednisone". I quickly went back upstairs to test, with Ethan in tow, and thankfully he was negative. Sometimes Ethan wants to know what he is, and other days he doesn't ask. I try not to say too much to him about it, as I don't want him to feel anxious. I know from having two son's that his urine is much less and different in color than his brother's, I know his is not normal, hoping and praying that one day it will be.