Last Update (For Now)

Five days in to a planned 7-10 day recovery we started preparing for a return home. Theo responded well at nearly every step along the way and was rewarded with a night’s sleep in his own bed on Monday night. We’re thrilled that Theo’s recovery went almost entirely without a hitch.

After a relatively short but emotionally taxing week in Boston, following a much longer journey back and forth from Rochester dating back just about three years ago from today, we feel like we’re at a point where we can start turning the last page on this chapter in our lives. Theo has the circulation he will have for hopefully decades to come. And although never guaranteed, all signs point to a healthy childhood and beyond for him.

We’ve been told that 8-10 years from now it’s likely Theo will have a minor cath procedure to monitor his blood pressure and ensure his circulation is holding up as it should. But until then we’re looking forward to watching him thrive, and to shifting the focus ever so slightly away from his not insignificant challenges to his strengths and accomplishments. One day, we hope Theo sees that those are one in the same.

What’s Next for This Blog

Meg and I have thought quite a bit about how and whether we should continue writing on this blog in the future. Over the last three years, it has been equal parts practical and therapeutic for us. It’s probably helped us explore parts of our lives we may not have otherwise. And it’s kept us in closer contact with many of you. For each of these things and more, we’re tremendously grateful.

At the same time, we get a sense that everything has it’s moment and it’s season. Theo has made us more proud than we knew we could be, and we’ll always look back at the last three years as some of the most challenging but fulfilling in our family’s young life. Something feels right about moving forward — not grasping on to the past or rushing to the future, but allowing one chapter to end while the next begins.

Perhaps most importantly, we hope Theo reads this blog one day and feels proud of what he’s accomplished, and understands how proud he’s made us. And to that end, we wanted to end with a note to you, Theo.

To Our Son

Somewhere deep down, the following lyrics will be familiar to you. Your mom and I have played this song for you probably hundreds of times since you were growing in her belly. While written for his daughter, we’ve adapted SYML’s song Girl for our son. 

Boy

Perfectly you

Broken and hurt

Soft and asleep in the morning gray

Shake off the night and don’t hide your face

The sun lights the world with a single flame

I want you to see this

I want you to see this

Today

And all of your days

I’ll wear your pain

Heal what I can in your troubled mind

Sometimes our bodies will hurt for some time

And the beauty in that can be hard to find

I want you to find it

I want you to see this

I want you to see this

So run

Wake up and run

My little one

I wanna tear down these walls that can’t hold you inside

And rip out the cords and uncover your eyes

We’ll make our escape in the dark of night

I need you to see this

Boy

You’ll see the world

And you’ll come to learn

That falling in love is a strange work of art

All of your battles will shape who you are

And know that your scars are my favorite part

I want you to know this

Know Theo that your scars are a part of you but they are not all of you. You can and you will overcome anything and be anything you want to be — you’ve already shown that. Have the insight to believe it, the courage to pursue it, and the perseverance to see it through.

We love you so incredibly much and we’ll always be with you, though sometimes in ways you may not have expected. We want you to know this.

Quick Update

Theo is doing very well and although it’s not a race, in many ways he is progressing ahead of schedule. He’s still in the ICU but we’re hoping he’ll be moved to the inpatient floor later today. Next stop from there would be home — most likely sometime in the middle of next week. All things considered we couldn’t be more amazed with and proud of his resilience.

We had a chance to talk to his doctors in depth yesterday about the Fontan procedure and what the future could look like for Theo, and I’ll try to explain that here in the simple terms that I was able to understand. Warning: I’m not a doctor, so consult your local pediatric cardiologist before sharing the contents of this post; I am however a lawyer, so you get a disclaimer.

The Fontan and Theo’s Outlook

Starting with the takeaway up front, if all continues to go well, Theo shouldn’t need another intervention for decades — most likely somewhere between 20 and 40 years. His new circulation will likely, however, take a bit of a toll on his body over the long run. The current setup probably isn’t sustainable for the duration of his lifetime, but until another intervention is needed he will generally look and feel like the next healthy child.

Now, to get a little nerdier and more specific.

To refresh from some earlier posts, in normal circulation “blue blood” (blood without oxygen that is traveling from the body to the lungs to re-up) flows through the heart, where it’s pumped to the lungs to get oxygen. “Red blood” (blood with oxygen that flows from the lungs to the rest of the body) similarly flows through the heart, where it’s pumped to the body to deliver oxygen to muscles and tissue. Typical circulation keeps blue blood and red blood separate in the heart (blue blood going through the right side and red blood going through the left) and in our blood vessels (blue blood traveling through veins and red blood through arteries).

I promise this is relevant to Theo, I don’t simply enjoy writing about high school biology lessons…

So in all of us, including Theo, our bodies are constantly pushing blood out from the lungs to the body and pulling it back in from the body to the lungs. The reason this is relevant to Theo is two fold. First, he only has one ventricle to pump blood through his heart, so if that ventricle was used to pump both blue and red blood, the two would mix together and the oxygen level in that “purple blood” wouldn’t be sufficient to fuel his body. Second, our bodies rely on a difference in pressure between the system that pushes blood out and the one that pulls it back in. A normal heart helps maintain that pressure differential because it pumps blood in both directions.

After the Fontan, the one ventricle Theo has is now used to pump only red blood from the lungs to the body. The veins that typically bring blue blood back from the body, through the heart, and to the lungs were disconnected from Theo’s heart and reconnected to his pulmonary artery. Those veins now take blue blood directly from the body straight to the lungs, bypassing his heart altogether since he doesn’t have a second ventricle to keep the blue blood separate from the red blood.

This is where the pressure differential comes in. Our bodies were built to have the heart help push blood in both directions, but Theo’s heart will only help push blood out — he will rely on the negative pressure in his “pulling” system to draw blue blood back to the lungs without assistance from a second ventricle.

Having a heart pump only one way could have a few different implications, but primary among them is imperfect regulation of that pressure differential. If that differential isn’t well maintained, blue blood can have a hard time flowing back to the lungs and can build up ever so slightly in his liver. This puts Theo at a higher risk of developing a liver condition (such as cirrhosis) over a long period of time. Fortunately we’ll be well aware of the heightened risk and Theo will be regularly monitored so appropriate remediation can take place if and when necessary. And in 20-40 years, who knows what that remediation might look like. We may not even need hearts on Mars…

Wrap-Up

Although we’re not home until we’re home, we’re feeling very positively about Theo’s recovery and his future health. Your continued thoughts and prayers are always so appreciated and welcome, and we couldn’t say enough about how thankful we are for our Boston team.

We’re looking forward to welcoming family to the hospital today — I know Theo is ready to get all the love from his grandparents. Fingers crossed for smooth sailing from here.

Theo is out of the operating room and beginning his recovery. There were no surprises — all went well. More to come over the next few days. Thank you for your thoughts and prayers!