The Super-Glenn

What a difference 24 hours makes. This time yesterday, Liam was being wheeled back into the OR for a last-ditch effort to bring him back to the land of the oxygenated living. Today, his saturations are 20+ points higher and his little body is pink and on the mend. 

There are different, non-medical, terms for the Glenn + Shunt: The Shenn, The Glunt, and my personal favorite, The Super Glenn. In talking with Duke’s Chief of Pediatric Cardiology yesterday, it seems as though there is a small subset of HLHS kids who just need more than what The Glenn has to offer. As of now, there is no research that would provide clarity on the existence of indicators which would point surgeons to an immediate “Super-Glenn” procedure. Partly because it’s only now that more and more kids are making it through interstage and partly because the need for more pulmonary pathways is being considered case by case, hospital by hospital. Maybe sometime soon a study will be created so that kids like Liam will not have to languish on the edge of life for days before a shunt is deemed necessary.

Today, we are hopeful once more. It is no accident this journey is described as a “roller coaster.” One day, we are trying to keep thoughts of funeral logistics at bay and the next, we’re thinking about extubation and getting the chance to hold our son for the first time in 9 days. 

Our faith has also taken a beating, but there seems to be a lot of mercy in spite of the challenges. My mom, who I consider one of the wisest people I know, reminded me of the story of Moses holding up his staff to win a battle (Exodus 17). So long as Moses held his staff above his head, the battle would favor the Israelites, but when he lowered the staff, the battle would turn against them. It was Aaron and Hur who stood beside Moses, brought him a stone to sit on, and held his arms up when he grew tired. Frankly, it’s a bizarre story, but the thing we can learn from it as people who are fighting a long and tiresome war is that we need people to come alongside us. We need people to find us a rock to sit on and hold our arms up when we can’t do it on our own anymore. 

And we have them- a whole army of Aarons and Hurs. From all over the country and the world they pray for Liam and his doctors, they comfort us when we’re scared, they bring us mountains of food, and they volunteer day after day to care for our daughter when we are unable to break away from the hospital. Even when we don’t get exactly what we pray for, we are sustained. 

One of our Aarons sent my mother a Psalm last night that captured yesterday so well and I will end this post with it in its entirety, bold and italics my addition as it perfectly captures yesterday’s agony. I love that we are allowed to question and to be angry at God in these times. I also love that God makes a path when we fear there can’t possibly be one. We are not so naive as to believe this is the end to all our troubles, but we are grateful we are getting through this one.

Psalm 77

“ I cry aloud to God,

    aloud to God, and he will hear me.

2 In the day of my trouble I seek the Lord;

    in the night my hand is stretched out without wearying;

    my soul refuses to be comforted.

3 When I remember God, I moan;

    when I meditate, my spirit faints. Selah

4 You hold my eyelids open;

    I am so troubled that I cannot speak.

5 I consider the days of old,

    the years long ago.

6 I said,[a] “Let me remember my song in the night;

    let me meditate in my heart.”

    Then my spirit made a diligent search:

7 “Will the Lord spurn forever,

    and never again be favorable?

8 Has his steadfast love forever ceased?

    Are his promises at an end for all time?

9 Has God forgotten to be gracious?

    Has he in anger shut up his compassion?” Selah

10 Then I said, “I will appeal to this,

    to the years of the right hand of the Most High.”[b]

11 I will remember the deeds of the Lord;

    yes, I will remember your wonders of old.

12 I will ponder all your work,

    and meditate on your mighty deeds.

13 Your way, O God, is holy.

    What god is great like our God?

14 You are the God who works wonders;

    you have made known your might among the peoples.

15 You with your arm redeemed your people,

    the children of Jacob and Joseph. Selah

16 When the waters saw you, O God,

    when the waters saw you, they were afraid;

    indeed, the deep trembled.

17 The clouds poured out water;

    the skies gave forth thunder;

    your arrows flashed on every side.

18 The crash of your thunder was in the whirlwind;

    your lightnings lighted up the world;

    the earth trembled and shook.

19 Your way was through the sea,

    your path through the great waters;

    yet your footprints were unseen.[c]

20 You led your people like a flock

    by the hand of Moses and Aaron.”