Wednesday, July 7, 2010

Let it Begin


Here we are. Philadelphia.
It's the adventure we could not stop thinking about but felt would never come. It's finally begun.

We said our goofy goodbyes yesterday morning. Driving away from the house with my boys waving on the porch just about broke me in half. Don't get me wrong-- I'm all about waving good bye for a week to go to Tahiti or Hawaii or anywhere a little sand and some quiet time with my hubby is involved. But this was different. This was goodbye and I'm not sure when I'll be back. This was I will be on the other side of the country, but I will figure out a way to get you whatever you need. This was I will try to bring your little brother back a bit better than when we took him. I don't want many more goodbyes like that.

We breezed through the airport. My good friends and running buddies Randy and MaryAnn called a friend at Delta who helped us to our gate. Security was a breeze--I've honestly had more trouble going solo before. And we all did a happy dance for being allowed to pre-board!

Then we watched movies.


Ate cookies.




And played peek-a-boo.




McKay could not have been better. And except for the guy behind us who had to be separated from his daughter for making her cry (seriously!), the flight was great.



By the time we arrived, McKay was exhausted.



And it was HOT.



When we landed we were greeted with a voicemail that told us all of the local Ronald McDonald houses were full. Incredible. And incredibly sad. So we moved into the local Sheraton, took showers and curled up on the bed. Mac knows how to chill. I hope to take the same picture in a week minus the purple feet!


I brought all of McKay's bedding from home hoping to turn the hotel crib into a familiar and sleep-inducing sanctuary. Wait? He never sleeps at home! What was I thinking? Our first night was less than restful, but that may have had something to do with the 85-degree room. I think the power grid was on overload due to the record heat in Philly and last night we experienced a little energy rationing. Oy, it was hot!


We arrived at the Children's Hospital this morning for a battery of pre-surgery tests and exams. Mac was an absolute champ through all of it.



He had an echo, unsedated, which I was sure was going to go south quickly. But somehow he lasted almost an hour of being covered in goo and wanded over.


They even made him turn upside down so they could scope his heart from the vantage point of his neck. Seriously? What almost 2-year old lets someone do this? Big thanks to Tom & Jerry for distracting us through the experience.



When we arrived back after it all, McKay used the arm that had not been poked for blood draws to drive Thomas until he simply could not stay awake any longer. (I know. He's laying on a hotel floor. Gross. He was promptly sanitized following this picture :).)

So that's it. We're here. Travel was excellent. The hospital was ready for us. We have tomorrow to rest and play and then we're back on Friday for the real deal. We had the "talk" today right before you sign the "form" that says you understand all that can go wrong and likely complications. I hate that. I'm realistic, but much prefer to concentrate on all that can go right. And we are poised to have so much go right.
One last thing...

I have faced some questions about our decision to be here; to bring McKay to Philadelphia. To leave my other boys behind. And I want to explain why--

This decision was made with great difficulty and heartache. We are not drama seekers. We would have preferred the surgeons at Primary Children's in Salt Lake do this in a heartbeat--had they felt comfortable. The truth is that when we met with our cardiologist about McKay's need to take this next step and the fact that the hospital had not yet recruited a senior surgeon to replace our FANTASTIC Dr. Hawkins, McKay's case was presented to the other surgeons. Their response? "Does the family have other options? We will take the case if we have to, but if the family can seek treatment elsewhere, they should."

This is not to say that the surgeons at PCMC are not amazing, fantastic, talented, life-saving miracle workers. They absolutely are. However, in McKay's particular case, their lack of experience doing the Fontan on dextrocardic kids trumped ego. And referring us out to another facility--the nation's leading pediatric cardiothoracic center--with surgeons more seasoned in what McKay needs is the most amazing, fantastic, talented, life-saving miracle they could preform for him. And for that I am grateful.

Philly is hot and busy and poised for miracles. We have done all we can to prepare, now is the part where we let go and let God. We are in good hands all the way around.

19 comments:

The Simmons Family said...

WOW.. you made it! Now onto the next step. Mckay looks as purple as Owen with his purple feet, O2 and yes, he lays like that for all his unsedated echos. I think they are just so used to it and they are too exhausted to fight it.

Good luck on Friday. We will be praying. It's SO hard to leave your babies at home and travel far away, for an unknown amount of time. Gosh, do we know how bad it stinks. I'm happy the option was available to you. He is in confident, experienced hands.

jaci said...

Our prayers are with you and McKay! He is a fighter!
Please if I can help in any way at home call me! The boys would love to play! Good luck with everything and keep us posted!
Love,Jaci

Christina C said...

I am so happy to read this update! What a cute recollection of your flight out there =) We are sending good (and cool!) thoughts your way...good luck!!

The Butlers said...

So glad to hear the trip out to Philly was a positive one. Darling pictures, darling boy! Thank you so much for the update. I have been thinking of you and what is going on...you go Mr. McKay! You are superman! Can't wait to see the next positive and educational updates. Stay cool! Love you!

Kyle and Alli said...

I am so relieved to hear that leg one of this journey has been accomplished with relative smooth sailing so far. That is a bummer about Ronald McDonald being full...let's hope that things change tonight for you guys. It would be nice to be settled in before surgery day. Enjoy your exploring tomorrow and we will be anxiously tuning in and praying along with the rest of Mac's adoring fans on Friday!!

michele84084 said...

May God bless your little one and you on this adventure!

Hope's Blog said...

I am so happy to hear that he did so well on the flight and through all his tests. I know the next few days will be hard, but you will be making that return flight with a cute, pink little man soon.

kto1s said...

Sending along hugs and walking around with a constant prayer for McKay, you, Matt and your family...

Alyson said...
This comment has been removed by the author.
Patti said...

If there's ANYTHING we can do to help with the boys here, please let me know!
You're doing the right thing. I feel it to my core. We're praying for you all, including the doctors. Here's hoping it all will be a walk in the park...

Alyson said...

I just discovered your blog and wanted to let you know that I absolutely LOVE CHOP!!!

We live right over the Tacony/Palmyra bridge in NJ (about 30 mins from CHOP)

I had to have a tumor removed there when I was younger, that was growing around my spine, on my rib cage and over my heart. Additionally, my Avery has been seen there by many of the cardiologists and GI docs. My 7 year old visits his allergist there every 6 months. Everyone there is fantastic!!!! You are in great hands.

I pray that everything goes well!

Jenny said...

Beautiful as always. Thanks for the update! Have a great day tomorrow together with you little guy:). I hope your room is cooler tonight.

Annie-Staten said...

Heather English (my sis-in-law) just told me about your blog tonight and gave me your blog address.
I just spent the last hour going through your entire blog and reading all about your sweet, beautiful little Mckay! I will be thinking about him and your family the next few days! He is darling!

Our baby just had his Tetralogy of Fallot repair June 22nd is now home, recovering and doing well. We still have a bit of a journey ahead with his eating/reflux issues, but he is doing great!

It is so wonderful to find so many other mom's and families out there and read about their journey's. Thank you for sharing yours!

Michelle said...

Wishing you all the best. Your family will be in prayers as you begin this journey.

GG said...

So glad you had a great flight...My prayers are with you and your darling McKay...Best of luck today..

christie said...

Hey... I stumbled across your blog while browsing on facebook. I had know idea all of this was even going on with you. I was so overwhelmed with emotion while I read all of your posts. I am amazed by your strength! You & your sweet family are in my thoughts & prayers. What a strong little man McKay is!

Amy said...

Cox Family, You are all amazing! Mindi, you have a gift. We are thinking and praying for you all. We love you. The Soffes

The Smith's said...

Go, McKay, go! You have so many people rooting you on!

Ryan and Hilary said...

I have been waiting for this post. Such an adventure and a huge leap of faith. You have been constantly in my thoughts and prayers. We will put the prayers in high gear now that we know the surgery is tomorrow. I know it is hard to keep the blog posted but I would love to have updates. I can't believe how grown up he is. He is such a big strong miracle man and we will pray for the absolute best for him. Try and get as much rest as you can it helps with the emotions. Much love, Hilary