So thankful. So worried. So much…

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Dr Baird (Marshall’s surgeon) isn’t entirely comfortable addressing the total anomalous pulmonary venous return issue at this point.  Drs Friedman &  Baird went to Dr Locke (Harvard’s chief cardiologist) to map out the best plan for Marshall.

Which isn’t easy due to the complexities of his anatomy, condition, and surgical outcomes.

As of now, they repeat a cath tomorrow afternoon.  Again he is n.p.o. at 8 a.m. Then the cath team will address the collateral arteries (by coiling them off), get more information regarding a coronary artery issue which may have contributed to the heart failure and stroke, investigate the anomalous vein issue further, and then try to place a 3mm plastic stent where the B.T. shunt has been since his first surgery.

Which, per a hunch and long talk with the cath lab doctor post June cath, is going to be nearly impossible.

Marshall’s veins and arteries are just too small. Dr P (the cath doctor) wanted to place the stent in June but held back because of the risks.

Hopefully he will remember this tomorrow afternoon.  My goodness I hope.

If not, Marshall will need more intervention.  Likely that Glenn Dr. Baird is quite hesitant to do. 

If they place the stent, that is great.

But.

If they don’t, this means a triple high risk Glenn. It will likely happen Friday, Monday,  or Tuesday.   If, and only if, Marshall can hold his own post cath.

(At least the o.r. is free on Friday…)

If they place stent successfully, and Marshall recovers well, they will try a milrinone wean.  Then maybe we can get home with close monitoring to fatten him up for a Glenn in a few months. 

If he doesn’t tolerate the milrinone wean, he will be relisted for transplant. 

This. Is. So. Much. I. Can. Barely. Breath. At. Times.

Especially today.

Luckily Marshall and I were not alone while Michael made an overnight visit to N.Y.  Marshall thankfully got to play with Grandma Martha, Herb, and Aunt Donna today.  And super thankfully I had extra help as I juggled calls to Michael, chats with my big boys, updates to family, massive stress, meetings, rounds, and whatever I am failing to mention. ..

So thankful.  So worried.  So much…

This. Smile.

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Is one of the millions of things which make this process harder than his first surgery. 

But he is well enough to have the 2nd stage palliative surgery known as the Glenn (in short terms).

Marshall goes in to the O.R. for his Glenn with Dr Baird and the team on Friday (just waiting for the official confirmation).

The universe’s irony is Friday, July 18, 2014 was the originally scheduled date. Beforr the heart failure, before the stroke, before this seven week stay in Boston.

Annnd we found out on the six month anniversary of Marshall’s first open heart surgery.

Breathe, Rebecca…  

Too Surreal For Words

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We have new worries.

But we have a plan.

And since we all love this little boy sleeping peacefully as I unwind my worry into this poor laptop, it’s long overdue that I let you in on both.

Please forgive me. This is soooooooo much.

Since I have yet to discuss the details with Marshall’s brothers and a few family members, I can’t share them now.
I will, however, express how surreal the past seven weeks have been.

There are not words enough in the English language to describe the feelings involved when one learns their son is in severe heart failure, is dependent on i.v. meds to perhaps get better, has suffered a stroke, and qualifies for a heart transplant.

There are also not words enough to express how absolutely heartbreaking the entire experience of watching all of this happening while 308 miles removed from my big wild boys, home, and all forms of life as I knew it is.

What makes this experience better is the people we encounter along the way and all of the prayers, good thoughts, and well wishes people sent. When I needed to smile again, my mom showed up with three big wild boys ready for long overdue hugs. When I needed reassurance, I chatted with another mama in the play room whose beautiful teenage daughter was three years post transplant. When I needed a brief break, Michael or the staff kindly took over (well tried to…Marshall doesn’t much like when I step away).

When we needed support, we found in in others’ generosity, kindness, and wisdom.

I can not offer enough thanks to the people who helped make this process better for all of us – especially Marshall. One thing is certain: Marshall is one HELL of a kid. He is the strongest, most resilient human being I have ever met.

So please lets hope that works to his advantage as he approaches this next round of very imminent challenges.

And while we’re hoping, please lets hope really, really hard.

With everything we’ve got.

(Sadly there were some people who made it worse. Yes even they deserve mention. They proved a nice strength test. Plus I trust that the universe will correct that at some point or another as it does all things.)

The moral of the past seven weeks of roller coaster-like experiences is this: Marshall has one HELL of a team (please pardon my language.) I watched them turn his heart issues one hundred and eighty degrees in a direction none of truly expected (though I truly hoped for.)

There were a bunch of very scary, very trying, and very difficult moments for all of us.

Thank goodness for the people who helped us through that.

And thank goodness Marshall is none the worse for wear.

This experience made me appreciate the best life offers more than I could ever say.

Nothing is more powerful than family, friendship, kindness, and most importantly – love – in times like these.

So as we go forward I have to ask for two things on behalf of this sleeping little boy next to me:
1) Please send more good thoughts, prayers, big hopes, and any kind of positive energy you can offer our little miracle (I’ve been here and watched those thoughts, prayers, and big hopes work better than anything else)
2) Please accept my gratitude and thanks for doing the above…I will pay you back one dozen times over (not that I could ever repay you for this but I’ll try my hardest)

“Put your heart in it boys”

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Has taken on a whole new meaning

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Isaac caught the ball at Fenway Park

Proof that when things are meant to be, they just are.

It all started when the social worker for the transplant team offered: “How can I help?”

And Michael jokingly said “Get us Red Sox tickets?”

So one week later I received the call that they had four tickets donated to the hospital.

I willingly accepted. Then called the box office to find out how to get a fifth ticket.

Then bent a few rules to get all of the boys and Michael sitting in seats next to me in the Pavillion behind the baseline from third to home.

In 2012, I lost a dear friend who went to Harvard. And whose favorite baseball team was the Red Sox. And Tristen was born when they broke the World Series curse in 2004.

You see, the heart wants what it wants. And when mine is set on something, “NO” is not an answer mine accepts.

So despite the inherent risks, we were all together for one of the 12 Most Incredible Moments in My Life Ever with the exception of Marshall’s absence. But he likely would have hated the experience.

The game was h-o-t. Marshall hates the heat.

The big boys were enthralled.

Entirely. Mesmerized. For. The. Entire. Game.

And thanks to text messaging, I knew Marshall and Grandma were doing well despite our absence.

The Red Sox played a (forgive my brutal honesty terrible) game until the eighth inning.

Then they picked it up.

And smacked a foul ball into the seats far behind us.

And Isaac, in his three years of experience as the strongest hitter I’ve ever seen, “caught” the ball with big help from Michael after it bounced out of the reaching hands far behind us, bounced down the stairs, and landed into his hands.

It was a truly one fantastically absolutely mindlessly incredibly awesome moment in our lives.

Especially since the probability of that happening equalled next to nothing.

And the best part was when Isaac turned to me moments after getting the ball and said he wanted to practice at Fenway park the next day :-).

One day he will.

I know this because I want it with all of my heart.

And more importantly, he does too.

If anyone asks him what he wants to do when he’s big, he’ll tell them “Play for the Red Sox.”

The Red Sox ended up turning the game around. And won in the 9th inning (I hope in part to my loud pleas to “Put your heart in it, boys!!!”).

On Marshall’s six month birthday.
Under the lights.
And stars.
In the city our baby was born.
And where my five year old’s dream became more than a possibility…

Overwhelming Gratitude

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Marshall received four more donations this week.  These donations pushed his fundraiser above $3000 for the first time. 

In fact, they brought the total closer to $4000!

It seems the generosity of these great gifts have a lasting effect which frequently leaks from the corners of my eyes.

We.  Can’t.   Thank.  You. Enough. For. Your. Help. And. Support.

:-………)