Two years ago Marsh was running from the Longwood Grille to the Yawkey with a two (or few) quick breaks.

At 3 a.m Marsh woke screaming in pain. I held him and soothed him the best I could. Then few short hours later he went to the OR in what turned out to be a Fontan failure. Marsh’s heart wasn’t strong enough to sustain the Fontan circulation. And Dr. Baird couldn’t wean Marsh off of bypass. So Baird did what he could surgically to attempt to optimize the circulation.

I will never forget the look in Dr. Baird’s eyes when he sat us down to tell us the news.

And I will certainly never, ever forget the mess Marsh’s body was in post op. To this day, two year’s later, I still cry at the thought of what we saw. Where Marsh had been pink and warm, he was ghastly white and cold to the touch. Where he had been alive and running, he was medically paralyzed with a sea of medication, wires, and equipment supporting his “life” (but non-living) functions. Where he had been breathing freely, he was on not one but two vents.

For three days, Marshall’s dad held post in one corner. And I sat bedside trying to find an open place on his essentially cold, gray, and lifeless body to touch while I still had him on earth with us.

It was a living hell.

And all his dad and I could do was sit. I cried silent tears while I hoped no one caught me. I listened to music. I begged everyone I knew and didn’t know for good thoughts and prayers. I told Marsh it was ok to go if he had to – all the while begging a force I was uncertain of in a silent chant: “Dear God, take me first.”

For days.

On the fourth day, I couldn’t find the inner strength to even go to 8 South to see Marsh. I slept the better part of the day in parent housing. And then I couldn’t stand being away. That was the afternoon we found Dr. Baird and Dr. Friedman together in Marshall’s bedspace – a situation so unlikely and improbable that it is equivalent to seeing Peter Parker and Spiderman in the same place. They were there because his nurse tried to wean him off the nitric vent. And it didn’t work. So the world’s greatest came up with the plan to try sildenafil as a bridge. The plan worked and they were able to shut down the nitric vent.

The team slowly pulled Marsh and his body together again. He broke through the sedation at times and would cry, gag, and gnaw into his vent. Horrific to witness and (later) he could recall times where the team insisted he couldn’t remember.

On the fifth day, they weaned down the vent and it worked-ish. This was the longest and profoundly terrifying day I have ever lived in my entire life. Marsh’s heparin levels were too high to complete the wean on the day shift so his poor night nurse K.A. (I will not forget her either though I swear the night was so difficult that she may have had a grown up drink on her lunch break).

He was delirious as they woke him. He was afraid of me – like absolutely and completely terrified – and even more afraid of the team in 8 south. His gut and lungs were full of something other worldly that he was literally and consciously drowning in. And he just barfed and barfed that otherworldly fluid. All. Night. Long. And. Into. The. Next. Day. All the while, his cognitive function was hung up between worlds. He would bounce between laughter and sobbing and fear and heartache.

It was hell.

He settled around 8:30 a.m. on the sixth day for a few minutes. And I caught a catnap but woke to him in distress with a swarm of people surrounding him. It was time to address other issues that I can’t recall right now…labs? Line removal? Chest drain removal?

And then I was able to finally crawl into his bed, hold him tight, and let him pinch my neck. We slept for six hours and then the road to “recovery” began.

It has been a rocky road every day since. The failed fontan left Marsh’s sinus node in a malfunctioning status. So he was in junctional rhythm for six months( or more?)- rendering the quality of physical function severely limited. He developed a pair of chest wound infections which left a crater so deep above his heart that my entire first knuckle of my pinkie fit inside (to apply antibiotic cream). He had a cough that he still can’t shake. And he hasn’t gained weight since.

But he was inside of himself again…just with severe ptsd and a different type of living. Pre-fontan failure, each hospitalization and treatment added life to Marshall’s living.

Now they just subtract. Last fall and winter took so much from him that I can’t even share it here today.

And words the world’s best medical team said after this last cath echo deeply but I can’t bear to mention them.

Despite all of this, Marshall still stands as the strongest person I have ever known.

I do know that all of the concern, good thoughts/prayers, and support have paved the way to making more days (even the not good ones) with Marsh.

For which, you have my eternal gratitude.

He is loved so much by so many that he is living his best life. And that’s all any of us can do. Speaking of which, time for meds…

Hugs. Love. And so many, many thanks.