Tuesday, May 18, 2010

Yesterday, Today, Tomorrow

Band of Brothers

I know. It's been a while. Please forgive. But just one week after McKay's cath, we checked back into a room on the third floor via the emergency room. McKay came down with para influenza--a nasty little virus that usually causes the croup. A big problem for little lungs that struggle to keep his system stable without other distractions. He spiked a high fever--103.5. We couldn't get him to sat any higher than 66 on 2 liters. It was scary--for about 6 hours. Then he stabilized.

We snuggled. He slept. I did not. He screamed at anyone and everyone that came within 10 feet. I wanted to (but did not).

His absolute refusal to cooperate and fiercely feisty attitude was enough to convince the doctors that he'd be just fine at home. I'm not sure who cried "uncle" first--the doctors or Mac--but the end result was the same. We were discharged with the promise to vigilantly monitor what would be the sure progression of the virus.

But this little fighter, whose spirit apparently runs as deep as his little comprised immune system, was over it. Indeed, that scary night was the beginning and the end of it. An occasional dry cough followed three days later and lasted only that long. It was over. I swear; this kid is such a fire drill.


In better news, we had the chance to squeeze in some long overdue family pictures last month.

This one is all kinds of handsome and heroic. His spirit overwhelms me and I am humbled.

This one surprises me every day. He is joy, and laughter, and rocket-propelled potential.

And, oh, my sweet leader of the pack. You are a mother's dream. Proud. Proud. Proud.

Our crew is happy.


We've spent a fair amount of time on the phone with Children's Hospital of Philadelphia (CHOP) this week. They've accepted McKay's case and Primary's still doesn't want it. Deal done. Dr. Thomas Spray will be his surgeon. Let the paperwork begin.

We've been told we'll be assigned a surgery date some time this week. And I feel more sure than ever that it's time. It's time to let this boy run. It's time to make plans for him that extend beyond this surgery. It's time to give his body a fighting chance at keeping up with his spirit. Sometimes you just know--it's time.


Dianne said...

You never cease to amaze me. You are such a valiant daughter of our Heavenly Father. I know without any doubt in my heart that He is very pleased with you and your family. Please know you are always in my prayers and thoughts.

carolyn q said...

I am glad that in the end you were able to come home and things have stabilized. . .but how scary!
I have some contacts by CHOP's that could come make a visit, so keep that in mind. I guess if you have to go somewhere else at least you don't have to be alone.
I love the pictures, your family is adorable.
Keeping you in my thoughts and prayers.

Patti said...

This shows I need to keep better track of what's going on over there. Wonderful family photos. Your boys are treasures- every one of them.

Stefenie said...

Great family photos. Thanks for sharing them!!

I'm glad that you are home and that things are better. Praying for his surgical date.

The Simmons Family said...

Oh my goodness... I didn't know you had to leave Utah to head to Philly for his next surgery. The Fontan? Soon? We'll be keeping you all in our thoughts and prayers.

LOVE the family pictures.. they turned out great!

So glad that things are stable and that McKay got over that nasty bug so quickly... but I would have been a wreck!!! :)

Lisanne said...

Thanks for the update! The pictures of your boys are priceless! Time goes so fast and they look so old!

Kyle and Alli said...

oh boy. I am so sorry. Grant has croup right now too and the sleepless nights in addition to the worries about impending surgeries make for a lot of stress for you Mindy. I sure hope that this was the last of the illness for Mac for the season and that you have surgery plans very soon so that sweet cherub of yours can get onto tearing up the streets of Philly!

GG said...

Just glad to see a picture...think of you and your wonderful family every day..
All the Boys look so full of life.
Take care and keep all of us posted.

Knudsen's said...

Mindi, I don't know you, but I stumbled upon your blog some time ago through a friend. I truly am amazed at your strength and spirit, and am touched by both your words and your sweet little boy. I wish the best for your beautiful son and for all those that know and love him. Camille :)

Sabrina said...

Mindi, holy cow. seriously. when does the madness end. soon, I think. for both of us, actually. glad to hear McKay has his surgery. I'm writing this from the step down. Fingers crossed, we're just a few days away from freedom from this place. By end of July, you'll have this behind you too. and then I think we should get together for a post-Fontan partee!