Monday, August 31, 2009

I was suspicious.... now I'm even more suspicious, he said

So today was Nate's appt with the Pediatric Nephrologist. Y'all I was 120% certain I knew what he would say. I was certain the cause of Nathan's polyuria/polydipsia was a urinary obstruction. I was sure at worst they would tell us he needed a simple operation to correct it and we would be finished with all of this.

One lesson I should have learned by now, never assume anything.

Dr H is amazing. I have never, in all my life met a doctor that spent 1.5 hours in the room with you. I have never, in all my life met a doctor who was so thorough he combed through the medical records of my family members in his search for answers. I met that doctor today.

He started off by telling us that he wasn't going to do much today but some fact finding. He had some slight suspicions, he told us.

First, he told us, the ultrasound did show some abnormality. The bladder was perfect to my surprise. It was the kidneys that weren't. He told us he honestly thought it was a measurement error and made the radiologist double check their work. But it wasn't a measurement error. My 2 1/2 year old son's kidneys are, in fact, the size of those in an 8 month old baby.

He asked about my pregnancy. He asked about Nathan's entire life. He asked if there was any family history of Kidney disease. He looked in my medical record and was astonished at my CT scan of 2007, showing 2 kidneys chock full of stones. Highly unusual, he said. He asked about our extended family, noting my grandmother's need for a kidney transplant in her 30's after sudden onset of severe anemia. Quite unusual. And quite suspicious.

He examined Nate and noted a paculiar extra fold in the lid of his right eye that we had never before noticed. He looked at his cataract with the light and then invited us to see it as well, seemingly almost jovial in seeing the peculiar tiny black dot in the lens, it doesn't take much to excite doctors. Looked closely over his Opthamology reports and asked that when we go to the U of M in October, to please request they look very closely at his optic nerve. He asked about Christian's hearing loss, of particular interest since the kidneys and the ears are so closely related. He asked about Nathan's eating habits, about his drinking habits and his odd liking, for a 2 year old, for salt. He put all of these tiny puzzle peices together in his mind.

He ordered a CBC to check for anemia, as it often starts to present in this age group with the disease he had in his mind. He ordered a urine culture we have to bring in to our clinic tomorrow to check for sodium wastage in his urine. He said he would put more puzzle peices together and call us tomorrow after the CBC came back.

I was slightly suspicious before, he said. After examining your son and talking with you I'm even more suspicious.

Before we left I couldn't help it, I blurted out "Can you please tell me what you are suspecting... I know you probably don't want to because you know I'm going to google it" And I cringed, because ya know, doctors hate that.

ABSOLUTELY he said, and he googled it himself and printed off a page for me. I have no problem with families being informed. And you know, if you ever want a second opinion, I'm totally ok with that too by the way. I would recommend the U of MN Fairview and I'll send all the reports myself, although I think it's a bit premature for that right now. Agreed.

So we don't know. He suspects a very rare condition called Nephronophthisis. A condition that is genetic. A condition that would mean our little Nathan would need a kidney transplant in the future, in order to live. A condition that, quite frankly scares the crap out of me and confuses me to the core. A condition I was not expecting.

For now, we wait for him to peice the puzzle together and to decide if this devastating condition will be put in our son's medical chart, effectively changing our normal, once again. For now we are instructed to let him drink as he pleases, eat as much salt as he pleases, and refrain from giving him things like Motrin/Aleve and other NSAIDS, which are quite hard on the kidneys.

I'm not allowing myself to fall apart. To grieve a condition we haven't confirmed. I am just doing my best to sit on my hands and wait. Like a good girl.

1 comment:

tropicalg77 said...

arggghhhh. Please let me know if you need anything, and dont let the internet get the best of you.