Friday, October 2, 2009

Back home...for now

Thank you, mommy & daddy for keeping me safe at CHOC

Well, we're home, and we're EXHAUSTED. 5 days in CHOC for a fever and infection, and we got out without any collateral damage! Those of you that remember the tape on the face incident last trip understand. Bella's back to her old self pretty much, and managed to pretty much not lose any weight despite not eating for several days on end. We think she just needed time for her esophagus to heal. She is still not back to the mega-meal eating schedule we had her on, but we're close.

No time to rest, though. We are ramping up for a week's stay at Rady's Children's Hospital in San Diego starting Monday for the insertion of a feeding tube into Bella's abdomen. She had her 4 month check up this morning and the covering physician was incredulous at how big Bella was despite her diagnosis. She was a little baffled that we were even putting in a G-tube. She just looked down and saw this big, healthy baby (50th % - weight, 75th % height, 90th % head circumference), but she didn't see the shrinking esophagus, or the hours a day it takes to feed Bella. It's all good. I straightened her out. j/k.

Mommy and daddy are beat, though. It was so tiring being "on guard" for so many hours in a row. Ang and I vowed not to leave Bella alone once while we were there and while it paid off, we paid the price, physically, and especially mentally. It takes a consistent active effort to stay so sharp and on the lookout. Thankfully, the staff at CHOC were extremely gracious and did pretty much everything we asked (politely demanded) of them.

Can't say the same for U.S. Airways. I spent over an hour fighting with boneheads at U.S. Airways to get my mom's ticket moved from this Saturday to next without having to pay the $150 change fee. Apathy at its worst. When I called Southwest to change my flight on Friday, the FIRST THING the CSR said to me was, "Oh I'm so sorry to hear that. Let's get you home to your baby." Then, she put me on a new flight and retrobooked the ticket 14 days prior so I wouldn't get killed. Total out of pocket cost to change on Southwest over the phone?


U.S. Airways decided to lecture my mother about "when you hit "I agree" online, you are saying that you are going to follow the rules...." When I took the phone from my mom and the CSR repeated that line to me, I was beyond stunned. Her dupervisor was on the phone in about 30 secondsd after that one, but he was as limp a needle as she was. Then, when I asked for his supervisor, he said, "My supervisor, Keith Dunn, doesn't take calls." I escalated up one level and was at the top of teh food chain at U.S. Airways. SOLID.

I PROMISED Javier (the wet noodle) that I would blog about this poor customer service, so here I am making good on my promise! Time to move on.

Oh, bottom line...they tried to hit my mom for $275 to her on a new flight with the help of the travel company she booked with for $25.00. It took over and hour and 5 people, but we got it. Now mom will be able to travel with us to San Diego to hang out and entertain Ali while we protect Bella.

We are looking into staying at the new Ronald MacDonald House there. I volunteered there as a music therapy intern last summer, and since then, they built a GIGANTIC new facility. I'm hoping for some good karma in that we can all stay there as a family for the week without a hassle. The old house was only 12 beds, so there was a huge waiting list, but this new house has 47 beds, so hopefully they can accommodate us with such short notice.

We head down there Monday, and hope to be home on Friday. Recording Bella's record has had to come to a halt, so has our trip to Minnesota. We're supposed to come home Friday and fly out to Minneapolis on Tues. I don't know about you, but 3 hospitals in 3 different cities in 3 weeks is a bit much, even for us wunderkind! LOL.

Speaking of which...I need a nap...bad. Talk to you all soon. Thank you for your love, prayers, and support!


    I am exhausted for you guys.
    I find myself exhausted as Molly has decided sleeping is overrated, waking up every 1.5 hours, just for the heck of it.
    I won't complain anymore...I can't imagine what it must be like for you guys.
    Hope you can "relax" somewhat in S.D.
    There is lots there to keep Ali busy :)
    Thinking of you guys, all the time.
    (and those beautiful eyes "say" so much)

  2. Dear Tim, Angelique, Ali and Bella,
    We are praying for a safe and fulfilling trip in many ways for your family. Take care of each other, know that there is a plan...
    Our intense prayers are with you, you are all amazing!
    -Michael and Robin Setto

  3. Praying for all of you! Thanks for the update! Bella is getting so big! :) She is gorgeous!

  4. You know something crazy? We were at CHOC on 5 East all week. Did you happen to say the crazy mom walking her child around and around and around and around the floor in a wagon or a wheelchair? Over and over and over? That was me. :)