...and then there's the jargon

I look up everything.

I search and search some more until I'm satisfied with the answers I've found.

I've learned over the last almost 7 years that sometimes you just can't find all the answers. And then there's the jargon making it nearly, if not entirely, impossible to understand the answers. Medical terminology is not my friend. I find it overwhelmingly frustrating to be face to face with the information I need and not be able to understand it at all.

Epispadias. Ugh.

Epispadias is a rare birth defect, affecting about 1 in 117, 000 boys. It involves the urinary tract and genitalia. It can cause urinary incontinence. It can affect a person's confidence and emotional and psychological well-being. Sexual health is also an issue. It requires multiple surgeries to repair and takes a toll on the patient and family. That's it in a nut shell.

In December, my son, who will be 7 and 1/2, will have bladder neck reconstruction to correct his incontinence associated with epispadias. It will be his 6th surgery and the most complex. He'll be in the hospital for a week, if all goes well, and recovering for 3 to 5 weeks more. The kicker? He may never be able to use the bathroom like everyone else. Instead, there is a great possibility he will have to catheterize himself for the rest of his life. As a matter of fact, during the reconstruction, his surgeon will create a channel from his bladder to his bellybutton using his appendix. It's called the Mitrofanoff procedure. If the reconstruction is a success, my son will never have to use it. Here's hoping. We'll know in about 10 months. Seems so far off.

In the meantime, I search. The more information, the better, I always say. But, the only information I can find is so complicated. I don't understand most of it, other than it doesn't sound good. I've found support and hope through HEA, Hypospadias Epispadias Association. It's a wonderful group with many understanding members. But, I still feel alone. And, unfortunately, my son is starting to feel isolated too.

Why can't there be a mom-friendly version of all the information doctors publish?