not the post I meant to write

I have been avoiding this blog, waiting for this to be over. Waiting to say, "It worked! We're done with this!" And then move on. This whole thing has just been too much. Then I think about others, dealing with so much more. Unimaginably more. And I feel pretty lame.
But.
I still haven't been able to completely shake this cloud. It has been lifting and I was feeling nearly normal. Monday morning I even felt optimistic. Gah. Here I am, making it all about me, and it's not.

Sometimes when I go outside and it's really cold I notice, after a while, that I am aching all over from clenching my muscles, trying to stay warm. The thing is, it takes a long time before I even realize I'm doing it. Then the muscle fatigue hits, all at once, and I'm exhausted. Completely and utterly exhausted.

Emma had her surgery in September and it went well that day. The surgeon was really pleased with how it went and after some initial pain at home that is normal with this type of surgery, she wasn't too uncomfortable. She moved gingerly for several days and then was back to normal. The thing with this surgery is that you don't know whether it worked until they do a follow up VCUG three months later.

Emma's follow-up VCUG was yesterday. The test itself sucked. Her last one wasn't great but it wasn't all that bad. This time the catheter hurt a lot going in and coming back out. Her face alternated between a grimace and eyes wide with fear. As I leaned over her face and whispered to her that it would be over soon and reminded her to blow, inside I was screaming and wanting to just grab her up and run the hell out of there.

Once the xrays started I watched the monitor and, to my eyes, the first side looked good. When they checked the second side I thought I saw something, but hoped I was wrong.

It's not all bad news. The side that was worst is all better. Perfect. The side that was not as bad is the same. Ever-so-slightly better, but not enough to be considered a lower grade. So we were given two options:

1. Do nothing and hope that she doesn't get sick. With any future fever we would have to take her in to have a culture to be sure she doesn't have a urinary tract infection. The problem with this option is that we saw from this past spring that her first and only uti resulted in kidney damage.

2. Repeat the surgery. The surgeon feels confident that the mound they created at her left ureter simply shifted and that it's very likely to be successful this time.

We're going with option 2, because I would go out of my mind just hoping that she never gets another uti in her life.

Emma actually seems to be taking it in stride. I need to take my cues from her. Because I'm still clenching and aching.

p.s. for all the times I've felt suspect of clowns, I apologize. To the Big Apple Circus clowns who made my baby laugh during part of the long wait at Children's hospital, you rock. She's impossibly shy and turned her face into my sweater so that you couldn't see, but she loved it. Thank you.