Today Ethan and I headed out to see his Nephrologist at the Children's Hospital. Traffic was very busy, more than it normally is when we go in. I tried to keep the stops and starts as smooth as possible as Ethan gets car sick, he looked very pale and green by the time we arrived! When he was back on prednisone, those trips were even worse. It has been 6 months since we last saw Ethan's Nephrologist. I was very curious to see what they would say at his progress. Of course he was very pleased that Ethan continues to be healthy, with no protein whatsoever for the past 11 months. The good news, is that Ethan received a clean bill of health, with his blood pressure and urine all normal. He is in the 50th percentile for height and weight, which is good, despite all the steroids he has had.
This visit was relatively short, as we didn't have many issues to discuss. But I did ask the all important question. One he had a hard time answering! "Is this it? Has Ethan finally outgrown his Nephrotic Syndrome"? His answer surprised me, he told me that Ethan will always have Nephrotic Syndrome. What? I thought he would outgrow this, and now you are telling me he will always have this! He described it this way, he will always have to watch out for signs, symptoms, even as an adult. The frustrating part of Nephrotic Syndrome is that there is no known cause and no known cure, so even after many years of Ethan being healthy, he could relapse again.
If it would return in a few years or as an adult, he said the chances of it being permanent and needing a Kidney transplant would increase. Now, he said, that is the worst case scenario. Thanks, like I needed to hear all the worst case scenarios.... That is what I get for asking!!! With a big smile on his face, knocking on wood, he told me that he believes Ethan will never relapse again. Hmm, I have heard those words many times before. The last time was right before Ethan had his worst relapse yet. I have come to realize that despite the doctor's assurances, they truly don't know either what will happen. As much as I would love to know the answer, we are going to continue to take it day by day. Thanking God for every day, week and month that goes by without a relapse. Thank you to everyone who has been praying for Ethan and my family over these past 7 years, you have no idea how much those prayers, love and support have meant to us. We couldn't have made it thru some very dark and hard times without you all, so thank you very much!
Thanks for sharing Laura! I am so excited that Ethan is doing so well! Praise the Lord!
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