Update 2

Surgery went well. Dr. Spray finished in lightening speed (a local joke I'm told among the nurses that when Spray has your case you'd better be ready because the child will be done and down in the unit in 5 minutes). And while I'm not sure fast is always good, Spray is both fast and good.

I was brought to tears today by an anesthesiology fellow who told me with all sincerity that McKay was treated by arguably the best surgeon and lead anesthesiologist in the world. So good to hear. So good.

Of course that means great groundwork has been laid, but it does not guarantee a clear passage yet. We've been told that we still have 2 to 3 days before we should fully exhale. In three days we should be able to tell how well his lungs and heart are responding to the radical change in pressures the surgery was meant to cause as well as McKay's tendency (we pray not) to have pleural effusions (fluid in and around the lungs) resulting from the change in pressure. Only time will tell and all eyes will focus on the daily chest xray to tell the story.

In the meantime, McKay is having a bit of trouble waking up. A round of painkillers given at 11 am and meant to last about an hour has still not worn off and it's nearing 4:30. He's still out cold. He's breathing well and rosy pink, but we're still waiting to apologize face to face for the semi-ambush he experienced today. Ugg, I wish there was a nice way to tell a two year old what's about to happen to their very sweet heart. Or maybe it's better they don't know. I hope he has to ask me to tell him the story of his scar. I'm sure I can weave one heroic tale of bravery and hope that's not so far from the truth. All eyes are on you to make it one heck of a fairy tale McKay; fight on.

The Big Day: Update 1

We arrived at the hospital at 6am. That's early, but not nearly as early as 3 am when Mac woke up hoping for a little drink. No such luck bud. And those pre-surgery food restrictions meant a protest for milk turned into a showing of Horton Hears a Who. There are definitely worse things than cuddling with your toddler in the middle of the night.

After checking in with the cardiac center we were taken to pre-op where we discovered a rash on McKay's chest. Really?!? Of course that meant a surgery consult was needed to decide if they would go forward with the procedure. It was soon concluded that the rash was nothing more than skin irritation likely, and ironically, caused by the gel they use to do the echocardiogram. He was cleared and preparations pushed forward. Pictures of our silly, tired little man to come.

They took him back around 7:30am and whisked us up to meet with his surgeon, Dr. Spray. This seemed completely unfair to me as the good doctor clearly had a lead on us from a brain power standpoint going in. Now, we had just handed over our child and we were expected to talk somewhat intelligently to the person who would make some of the most critical decisions of McKay's life for him. Regardless, he was kind and confident and gentle. Exactly what you'd hope for.

He is also FAST. We were just told McKay is coming off the heart lung bypass, being brought out of circulatory arrest and will then have his body temperature warmed back up. Literally back to life. Three short hours. Amazing.

We'll post pics as soon as we can, but so far, so good. Praise be given.

Little Lines

We all have little lines we draw in life. How far we'll go with this... or how long it will take us to get to that. We draw those little lines in the sand--in our minds--all the time.

McKay has a different little line. One to which I've become quite attached.

This is the second of two large scars McKay bares from his previous surgeries: The Blalock-Taussig Shunt which he received at just two days old and which left him with a large semi circle of a scar that extends under his right arm and around to his back and the Glenn or Hemi-Fontan which left the perfectly-centered beauty you see above.

And I do think it's beautiful.

I'm actually a little sad it's getting replaced tomorrow. Replaced with a new line that will tell the story of his Fontan. I'm sad because this little line has come to symbolize a strong will, a fighting spirit, a reason to be. It was the result of an impossible tomorrow tackled and overcome when Mac was just three months old. It came when I was in a state of mind to think this was a good day:

You see, Mac's tiny little line and me--we have a history. It saved his life. It taught me about hope and faith. Real faith. It taught me what it means to appreciate. Days. Hours. Moments. Time. And it has given us just that: time. But as tiny little lines are want to do, it's time to be redrawn.

So McKay, as I sit and listen to you breathe in the makeshift crib next to my bed tonight too many miles away from home to count, I will not sleep. I will worry and pray and think silly thoughts about missing your beautiful, perfect little gift of a line. Because that's what moms do in situations like this. Because there is nothing else to be done.

I want you to know that today, as we ventured out to the aquarium to see the "ish" (primarily just so I could hear you chant that as we walked past all the tanks, "ish, ish, ish"), I saw in you the man I hope this surgery will help you to become:

You were thoughtful and curious and happy.

You took time to size up the situation and appreciate the beauty and wonder that surrounded you.



And then you walked right up to confront, explore and experience it all face to face.

Please do that for me tomorrow little one. And I will remind myself to do the same.

xoxo,

Mom
_________________________________

If you're curious, here's a little more about McKay's procedures straight from the doctors who will operate on him tomorrow:

Single Ventricles and The Blalock-Taussig Shunt

The Glenn or Hemi-Fontan
The Fontan

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.

Preparations

Last summer we started talking about next year.
In the fall we wondered what the next nine months would bring.
In the winter we were told we had about six months to prepare.
At McKay's March appointment we were told to plan on July.
Today, we realized all that time was gone.
We are talking about days now.
Just 11 days to be exact.

All the preparations have been made.

My sweet boys will remain behind with friends and family. They are scheduled for fun day and night and will probably be disappointed the party is over when we come home. Let's hope so.

We're on the list for a room at two different Ronald McDonald houses in the Philadelphia area. You call the morning you hope to arrive to see if they have a room available. I usually like to plan a little further ahead than that, but we're learning this journey is all about going with the flow.

We think we've figured out the impossible process of getting a continuous flow oxygen concentrator onto a commercial flight. Lord please help us meet the right people to get us onto that flight without a hassle. I really might lose it for good if we have to fight that battle.

We've purchased a new rolling car seat designed to get Mr. McKay into and out of the plane and into and out of cabs without completely losing our minds trying to carry all of the bags and equipment he needs. He travels like a complete diva. That's okay-- because he is FAB. U. LOUS.


Now all I need to do is find the courage to hand my baby over again. Hand him over to a stranger who although well-pedigreed and unbelievably highly recommended, is still a stranger. He will literally open up my child before him and rely on experience to guide his decisions. Most of which we're told will occur on the fly. Because, of course, there is just no way to know what will work best until they are actually staring at the twisted miracle of McKay's unusual anatomy.

Damn it. I hate this part.

I hate it because I always shut down. I get quiet and bugged and self aware that I am not at all the person I prefer to be. So I try to fix it by not thinking about things. But there he is. All 29 pounds of soft, ticklish love. So I melt into a complete puddle almost daily and start the process again.

Of course not one ounce of this is about me at all. I am just a privileged ticket holder with a front row seat to McKay's journey. And he is happy. He is ready to be free of the cords that are holding him back. He is ready to give up cold, clammy, purple toes. He's ready to trade in arms that look like he's been dying jeans all morning long for something of a pinker hue. He's ready and so are we.

I hope our journey is more comical than it should be; our adventure more heroic than we deserve; and our child more watched over than we can imagine.

We have cheered from afar so many long-shot victories from our precious heart friends. And I'm ready to step up and claim one for my McKay.

I worry a full month between posts can get you get kicked out of the heart blog support group. If that's really true, I'm glad I've barely made the deadline back into your good graces. We need your advice, your inspiration, your I've been there done that, keep getting out of bed and loving your child sensibilities. We can do this because we have seen you do this. Thank you for telling your stories. It helps us write ours.

xoxo.

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.

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.