November 07, 2013

Medical Bag of emotions

It's been a while since we've done a medical update here. Well, a few months anyway. That's good! But, it's that time of year (again) for the routine clinical follow-ups - urology, general surgery, orthopedics, neurosurgery, and neurology. I don't know what it is this time, but I have had a really hard time making the appointments. No, not because of the inherent logistical issues.

I hang up.

Seriously. I called scheduling about 10 times and it rang and I hung up the phone. As I'm dialing the numbers I'm envisioning the pre-game show where I tell Ben where we are going and why, what's going to happen and why, and answer the usual questions most parents get from their 6-year-olds like...

"Will there be any needles?!"

"Do you have any magic cream?"

"Does Olivia have to go, too?"

"Why do I have to go and not Olivia?"
(Because your body is different than hers.)

"Can we stop at Olive Garden?"

"Am I going to have to take off my pants?"

"Is the doctor going to look at my p*n*s?"

"Am I getting a jelly belly"

"Can we watch Ninjago?"

"Can I get a toy from the gift shop?"

"Can we stay in that hotel with the games and big breakfast and ice cream social and all the kids?"

God bless the Ronald McDonald House. I swear he has no idea it's associated with the hospital. He asks about it at the most random times.

I digress. I just really, really, really didn't want to make these appointments. We've been skating by for a nice long while now. Nothing major. Nothing special. It's nice. Really nice.

But now it's time for the preparing, getting out the medical play equipment (the catheters, IV board, electrodes, face masks, etc), the bargaining, the begging, the negotiating, the stressing, the second-guessing, the fantasizing about just skipping this one.

And then it will be time for the driving 3.5-hours, the re-negotiating, the maneuvering through the most terrible neighborhoods of Cincinnati to get to the hospital, the buying of crack cocaine (just kidding), the parking (which is free, by the way...that is for you, you jerks at Northwestern and UofC), the last-minute fight-of-flight response which usually means I have to block a door to stop my son from running into traffic (or drug dealers...or, like that one time when the drug dealers at the bus stop prevented him from running into traffic), the holding him down while he begs and screams, the test results, the good-news-bad-news discussions...

And leaving feeling lucky that we get to take him home. I swear we are still traumatized by those long-ago days of the NICU.

Well, after all those hang-ups, I finally placed the call and got the scheduling ball rolling. And guess what?

Urologist is gone. Yeah, Dr. Alam has left. So then I'm asked which of the other 4 urologists do we want. Asked some "experience" questions and narrowed it down to 2. Picked the one of the two whose name sounds familiar which I'm assuming is because I've seen it posted on facebook in one of the medical support groups.

So, a big round of applause to welcome a new urologist on board - Dr. Reddy. I'm sure he's weird. No offense. As my sage Aunt B once told me - "All urologists are weird." Yes, even weirder than neurosurgeons.

And, in other big (HUGE) news...

DR. PENA IS NOT DOING SURGERY. Yep. He will still see his patients in clinic but he is no longer performing surgeries. (It's weird, right, that I can't type that or think about it without crying?)

Since I'm on the abandonment wagon anyway I might as well mention that Dr. Solomon, the principal investigator for VACTERL research, has left the NIH. He says he's going to some place private and it will actually be "better" for his research...but I'm skeptical. Although he did express interest in incorporating community-based participatory research into his future work.

Mark my words: if one more researcher takes my kid's blood (my blood, my husband's, our other kids') and then bails on the research before publishing jack-diddly I WILL NEVER PARTICIPATE IN RESEARCH AGAIN.

Haven't heard back from neurosurgery yet.

Neurologist emailed back and said "just text me when you're free and we will meet" <<>> Isn't that just great? He wants our blood (for research), too, and I might just give in because he's just that great. 

I'm trying to get ortho scheduled at a satellite campus because the clinic at the main hospital is so outrageously horrific. If you don't believe me, ask Uncle Andrew. He was there. There aren't enough chairs for everyone. At an ortho clinic. Seriously. So, basically anyone who is ambulatory has to stand. Ridiculous.

I do kinda love his ortho, though. Even our urology nurse said "he has a great reputation!" Which is about the highest compliment possible coming from the nurse I have nicknamed Debbie Downer. No, it's a reasonable nickname I swear. She's the one who calls with lab results and says things like "Well, you know that's considered kidney failure." And I say, "That's something that's reversible, right?!" And she says, "Well...maybe." So, our ortho rocks.

So, I bit the bullet and made the appointments (except ortho...still waiting to hear back) and it looks like the big, bad date is December 13th. That would be...drum roll please...


Of course.