The other day I shared a picture of the boy at the doctor's office on Instagram. I briefly mentioned his kidney disease and within moments I began to receive well wishes, emails, calls, and texts from people I do and don't know. I guess I had never really shared his disease publicly until then. Your words of love and support were truly thoughtful and as I read some of them to my son he said "mom you should tell them about my super kidney." So here I am. Ready and willing to tell you the story of my son's super kidney.
The boy was an unnamed baby in my womb when the Chef and I found out that he would be born with kidney disease. Having virtually no parenting experience the news of our baby boy's tribulation broke us down flat. If the pregnancy hadn't scared us this certainly had. What had we done wrong?
From the moment we found out that the boy had multicystic dysplastic kidney disorder we made it our goal to find out everything about it. Our pediatric nephrologist guided us through the mumble jumble of the medical texts and assured us that even though this disease sounded scary, it was certainly manageable. Hell. Most people went through their entire life having the disorder and never even knowing it. Finding out about it in utero was rarer than the disease itself.
Almost 10 years ago the boy came into this world healthy and happy. The first couple days were rough, as a series of testing & prodding left us scared. We made it through it and Catcher's kidney disease has barely been noticeable. We go to a specialist every couple of years. He gets an ultrasound to see if the super kidney is growing. Eventually his right kidney (the one that is covered in cysts & doesn't work) will disappear into it's self and his left kidney will become super sized.
Until this year we have not found a pediatric nephrologist we liked as much as our first specialist at Rainbow Babies when the boy was born. Unfortunately our health insurance didn't allow us to go back to Rainbow and two years ago we found ourselves at the Cleveland Clinic with an uncaring doctor who treated us like a medical record number. I vowed to never settle for a doctor again and this year after a huge search we found ourselves in the hands of two fabulous nephrologists back at Rainbow Babies (seriously the best!). They made the boy feel special and spoke to him so he could have a good understanding of what was going on inside him. Last week we got his ultrasound and as I held his hand in the dark room I saw his super kidney for the first time. The kidney was huge! I knew in my heart of hearts that he was going to be ok.
The doctor called us this week and confirmed my positive feelings. His good kidney, is in fact, turning into a super kidney. All is well and the boy doesn't need to come back until he was 12. I just couldn't be any happier. I am so grateful that he is healthy and I am so thankful that he is so brave. I've got a good one, that's for sure.