On Ian’s Kidney

This morning we got up early and drove out to the Children’s Hospital for our county (one of the best in the State) and met Ian’s pediatric urologist who will be overseeing his care and his kidney.

Scott just left to take Salem to school, and we are going to spend some time out doors today, he said he is going to buy me a new shirt, but I had to write this first, because I am not sure how I feel.

The emotions and the thoughts are scrambled and I am not even sure what to say. It feels like I want to cry, but I am not entirely sure why. Maybe I should cry.

I can say that since he has been born, and I have held him in my arms and looked at his perfect face, I have worried little about his cystic kidney. Especially since the on call urologist that visited him in our hospital room the day after he was born and said that the kidney was cystic, but that it had all this healthy tissue and was functioning.

And even making the half hour trip, and walking from building to building, my biggest concern was what if Scott and I don’t agree on his treatment? Even when we finally found the right office, and we walked up to the counter to check in, I still had no fear. Sitting in the waiting room and seeing all the other children oddly brought me a since of peace. Not because I felt relief that we weren’t the only ones, but because it just meant there was more people in the room. Filling out the paperwork was little less than a chore, but when the doctor opened the door and called his name to come into the hallway, I was gripped with a feeling of dread that made my head spin.

Scott held Ian and for the first time at a doctors appointment for either of our children, the doctor addressed him before me and I was grateful. It meant I could sit in the chair and nod my head occasionally and grip the paperwork in my lap while my hands sweat and concentration on holding it together. I had to force myself to concentrate on what he was saying because the thoughts were swimming in my head and I couldn’t sort them out.

Finally, when he looked at me and asked me directly if I had any questions, I was able to formulate, "What would you do?"

Turns out that the healthy tissue, and the functionality are not good things after all. If the kidney was simply just made up of the cysts, there would be a great chance it would just absorb into his body and we could monitor it until then. But the tissue is where the infection will grow because the functioning part of it will flush things in, that will not be able to get out. There is also a chance for cancer.

He reviewed the ultrasound from the hospital and said he agrees with the original diagnosis, that his right kidney is perfectly healthy and the left is a dysplastic kidney with some functionality, but he still needs to run his own tests to be certain. They are going to do a detailed x-ray of both kidneys, and stick a tube in his penis, flush fluid through it, and make sure nothing can get into his healthy kidney so that one remains healthy for him.

Most likely, when the tests come back and confirm the diagnosis, we will op for the surgery. Deep down I feel this is the best, most safest thing for him, but somewhere inside of me can’t process it. It’s only been 2 and a half hours since we left the office, but I simply can’t find the resolve to say it’s ok.

He’s so small, and my child, my only boy. I feel like anesthesia and surgery is only for adults. How will he look so asleep and so still? The doctor said it will only be a little incision, but they are going to cut open my son and remove a part of him. As flawed as it is, it’s still made up of him.

Am I being dramatic? I really can"t tell, so if I am, it’s ok…. you can tell me.