Thursday, March 26, 2009

Bye-bye Mic-key!

Sung to the melody of the Mouseketeers:

M-I-C...See ya never!
K-E-Y...Why? 'Cause I don't need you!
(Credit to Tom for the lyrical adaptation)

Yes, it was pretty obvious, my previous post...Natalie got her mic-key out today.

We have been on a waiting list, to make an appointment for May to get her mic-key out (her g-tube connection), which is a testament to how many kids with GI problems there are, compared to how many GI doctors there are.

But I digress. The past few weeks, Natalie has had pinkish goo coming out around her stoma, and it seemed like her mic-key was getting too tight again (she needs one with a longer distance between the balloon on the inside of her stomach and the button on the outside) and causing her pain. So Monday I called the GI nurse to see if we could get things moving a little more quickly than May or June. Usually the GI nurse returns the call the same day, but I forgot to call on Tuesday, so when I called on Wednesday, the nurse called back right away.

And she gave us an appointment for the very next day! I've learned that's the way things go with GI: either you wait four months for an appointment, or you get one the next day. Unfortunately the appointment was with a doctor we've never met, and for the next 24 hours, I was wracking my brain to see what, if anything, I could remember about this doctor...if I had met him, and what he was like. I did meet at least one GI doctor when Natalie was in the hospital with pneumonia that I never wanted to see again, but I couldn't remember if it was this one.

It wasn't! It was a very nice doctor, who just asked me a few questions (instead of reading Natalie's entire history--faster to just ask Mom the pertinent questions), agreed to remove the mic-key, and told me the risks that it might not heal up, and how long it would take to schedule surgery to close the hole in Natalie's belly if it doesn't heal on its own.

Oh yeah, he also asked me about her syndrome..."Doesn't it have something with the fingers?" So here's a doctor who has never seen Rubinstein-Taybi Syndrome before, even though he must be in his 60s. I showed him Natalie's thumbs, which although broad aren't particularly remarkable...many kids have thumbs that are more obviously RTS than Natalie's, and I could almost sense him thinking, "I would never be able to diagnose that syndrome based on thumbs!" It's so funny to me that there is so much more to the "look" of RTS (and thus the diagnosis) than the thumbs and toes, but the thumbs and toes are what's in the medical literature, so that's what people ask about.

Then he asked me if I wanted the mic-key as a souvenir. No! He removed it, put gauze and compression tape on the stoma, and we were out of there. Natalie seemed to realize something was missing afterwards (she was crying during the whole thing because she didn't want to lie down on the table) because she lifted her shirt to look at the bandage. But we dropped her off at school and the counting begins to see whether the stoma will heal on its own.

Natalie got her g-tube on April 24, 2006 at the age of four months. I'm happy to write the obituary on her g-tube on March 26, 2009. Rest in peace, Mic-key. We're happy you are gone!


Corey Hudson said...

congratulations!! what a huge day! i cant wait till frankie gets to this point.. best wishes on the stoma healing!

Terri H-E said...

We are so happy to hear about your loss. Maybe you quickly rid yourselves of the memories of Mic-Key.

You are in our thoughts and prayers,
Addie's family

Jessica mommy to Alex/ RTS said...

R.I.P mic-key....

Michelle said...

Wow, what a momentous occasion! Planning to celebrate? ;)

Kelly said...

That is awesome news!

Kelly W.