Sunday, May 23, 2010

Philly Bound

Area codes 215 and 267 have become the trigger for the swarm of butterflies that acts up in my gut from time to time. They're numbers that showed up frequently on my phone last week; all calls that culminated with a whopper from CHOP's scheduling office on Friday afternoon.

July 7: 9:30 am
pre-surgery labs and echo

July 9:
Fontan operation

That's what we know. We'll plan to it and prepare as best we can. We feel certain relief and extreme anxiety all rolled up into an eerie calm. So many details confirm that this is the right path for Mr. Mac. And as much as this is a roller coaster ride for us, it really is McKay's journey to take. We consider it our privilege to accompany him.

Lead on little one.

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.