Dr. Rude & The Glam-Tube

Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers.  And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they'll routinely start offering SMA testing.  If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.

Mommy mommy, wake up wake up wake up.  Waaaaaaake up.  It's time for my G-Tube procedure so get all of our stuff and let's goooooooo!

I told mommy if I was being impatient it's because the SMA is effecting my ability to swallow so I'm not feeding well and I've lost even more weight since my last doctors appointment this past Friday.  Also, one of my doctors told me it's probably best I strictly use the G-Tube once it's in place because I aspirate when I swallow and that could lead to my getting pneumonia.  Daddy told me that means fluid goes into my lungs and if it causes illness, such as pneumonia, it could be fatal.  I think fatal is a bad thing, so getting my G-Tube done today was veeeeeeeeeery important to me and I could tell my mommy & daddy were just as nervous and excited as I was to get this done.

Oh wait, all this excitement about my G-Tube being done today and I almost forgot to tell you about the nightmare I had last night.  It was so scary I had to crawl into bed with mommy & daddy in the middle of the night.

The nightmare started with mommy & daddy being told yesterday that my G-Tube surgery had been moved up to 10:45am today.  So the whole night you could tell everyone was nervous and would probably have trouble sleeping, but nobody ever said anything about it.  When we all woke up the next day, we got ready to head to the hospital.  I told mommy & daddy that the G in G-Tube probably stands for glamorous, so I wanted to make sure to dress appropriately as to not embarrass myself among my fellow Glam-Tubers.

Thank you?  Aunt Adria for the ridiculous outfit when I was born.

The glamorous, glamorous.  Oh the flossy, flossy.

Lie to me nurse.  How bad is it?

In my nightmare, once we arrived at the hospital, we met a new doctor I'd never met before...and hopefully never meet again.  She was R-U-D to my mommy...rude, rude, rude.  Now in her defense, she was every bit as confused as I was as to why mommy & daddy were told my Glam-Tube surgery was scheduled for today, yet in the system we were only scheduled for a consultation and the surgery might not be until next week.  Hey, mistakes happen, but that doesn't mean mommy & daddy can't express their displeasure while trying to make sure I get Glammed out.  But when Dr. Rude said "Look ma'am listen" to my mommy, my daddy had to tell her she was adding fuel to the fire and she may want to choose her words more carefully next time.  I'm not sure what daddy was talking about, because there was no fire and I did not smell gasoline, but he seemed pretty sure there was a fire and the flames were about to get aaaaaaaaa looooooooot bigger if someone didn't hurry up and Glam me out.  At one point daddy looked at me and said, "you may wanna get your mommy out of here, because I think she's about to drop kick a" hold the elevator please.  Thank you.  Wait, where was I at within my story?

Oh yeah, so then I whispered back to daddy and told him reeeeeeeeeeeal softly, "Daddy I don't get it.  If we go to a restaurant and order a steak, only to have the waiter bring out fish, we simply tell them they messed up the order and then they apologize and do what they can to fix it.  They don't look at us crazy and then tell us to come back next week and they'll have our steak ready."  Daddy then told me, "it's because we are considered customers in the restaurant industry and patients in the medical industry.  And while waiters are trained to serve customers, some doctors are born to test patience, I mean patients, and some are born to help them."  To which I reminded daddy that every time we go to a restaurant we always tip the waiter and maybe we should have left a tip for this doctor.  Daddy giggled and said, how's this for a tip...whatever that means.

Then daddy reminded me that I have an amazing medical & patient advocacy team in place, which Dr. Rude will never have the pleasure of being a part of, and I should be thankful for the nice doctors & social workers who are all here to help me.  Speaking of my amazing team, they suggested we go to lunch while they figured out how they could get me back on the surgery schedule ASAP.  So that's exactly what we did.  Daddy had Ranch dressing with some lettuce, mommy had a dry bread sandwhich, and Nana Sandi had some soup & an Avery roll.  Hey wait a second, what's an Avery roll?

After lunch we met with Dr. Karam and her team.  And boy I tell you, compassion must run through the entire GI department because when we first got there, my nurse started asking my daddy questions about me like, "what is your daughters date of birth?", daddy answered 11/11/11.  Then she asked daddy to spell my first & last name and before daddy could say A-V, my nurse started crying, apologized to us because she'd seen me, mommy, and daddy all inside of the TV, and then she ran crying out of the room only to come back a minute later with another nurse who helped her help us.  Mommy & daddy made sure to give her a biiiiiiiiiiiig hug and then they told her they loved her.  Then when we were done she went and got a few of her friends, who got a few of their friends, who got a few more of their friends...

After my GI photo shoot, my Dr. McSteamy told me that he & Dr. Minifee were able to get me on the surgery schedule for tomorrow, well technically today since it's already 1am.  I'd never met Dr. Minifee until tonight, well last night, but he's really nice and seems very intelligent.  He is the surgeon who will be Glammerizing me and I'm pretty sure he went out of his way to meet me last night around 10:45pm as to get my patient/surgeon consult out of the way prior to my surgery tomorrow afternoon.  Not too many doctors would do that so thank you Dr. Minifee and I can't wait to see you again tomorrow.

If there is a downside to how today turned out, it's that I'm still not feeding well so I'm having to stay in the hospital overnight with an IV in me so they can keep me hydrated for my surgery tomorrow.  My less than one hour surgery, just turned into a few days at the hospital surgery.  But it could be worse...I could be in prison...

Lockup: Texas Children's

Trip Advisor gives it ****

Is this really necessary at midnight?  I liked

my room better.

When the nurse said inner tube, I thought she meant we

were all going back to Schlitterbahn.  Not cool!

Items I Can Scratch Off My Bucket List:

1. Wake up without waking up mommy

2. Have a bad dream & sleep with mommy & daddy

3. Dress ridiculously over the top

4. Have a sleepover at the hospital with just mommy & daddy

5. Meet a stranger and make her cry, but also smile all at the same time

6. Have someone tell me in the lobby they loved my story and keep it up

7. Stay up past midnight

8.  Get over 100,000 page views in one day (04/18/12)

9.  Have at least 1,000 followers

10. Have my story told in another language (Wee Wee Baby!)

Up Next:

Whatever I bring to life, because I don't have time to sit back and wait for life to bring anything to me.

Don't forget to share my story by following & forwarding my blog, following me on Twitter  (AveryBucketList) and Like Me on Facebook (Averys Bucket List)!  While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!

http://www.facebook.com/AverysBucketList

https://twitter.com/#!/AveryBucketList

If you feel comfortable making monetary donations directly to a registered non-profit organization, mommy & daddy strongly encourage you to please do so in my name to the following organization:

Fight SMA (www.fightsma.org)

Cure SMA (www.curesma.org)

Sophia's Cure (www.sophiascure.org)

Thank you!