Fontan Circulation

My large family is joined in prayer with others in the Caring Bridge website community as we follow the progress of my  nephew's young son.  Guide the hearts and hands and minds of those who care for him O Lord.  He's had what's called a Fontan procedure, the last stop on a trail of heart surgeries to reroute his circulation.  His Mom's and his Dad's hearts have had their circulation rerouted too.  Mom says her heart now walks around outside her body. 
Bryan and Marcie, now Collin's Mom and Dad.  I have a mental picture of them during their courting days, snapped as they arrive at a family picnic looking all sun kissed and carefree.  Here comes Ken and Barbie, calls one of their cousins.  With a smile, Bryan snags a cold beer and toasts the group.  Marcie's dressed in a coral top and khaki shorts, and her long, blonde hair is pulled back by a matching coral scarf, some gauzy material looped into a bow.
After a fairy tale wedding they settle into married life and Collin is born by c-section following an uneventful pregnancy.  After they meet and greet him, baby goes to the nursery and they celebrate with calls and e-mails to friends and family.  He's here and he's beautiful!
Their pediatrician sticks his head in.  I'm sure it's nothing, but he seems a little dusky.  I'm going to have another doc take a look.  He smiles reassuringly.
The new pediatrician isn't smiling.  His heart needs to be checked out.  I think he needs to be seen by Mayo.  Stunned, they ask how soon they'll need to take him there.  They're coming here.  By helicopter.  Now.
That was four years ago.  Four years of joy and worry and triumphs and sleepless nights.  If the fontan can be done, blood with a better path to his lungs will pink his cheeks and lips, and each beat of his heart will send more oxygen to power little arms and legs that long to keep up with other kids. Your gift of abundant life heals and sustains him. He is renewed and restored by your Son's holy presence and the working of the Holy Spirit in his life. 
The surgery is over, but he's not out of the woods.  Keep praying!
As I get older, it's harder for me to understand why some little ones and their families have to go through so much.  I remember an image from The Blood of the Lamb (1961), by Peter DeVries. Anguishing over the death of his child, the protagonist speaks of the question why as a fish hook in the human heart. 
There's a new entry in Marcie's Caring Bridge journal.  Collin is doing well!  To those of us who read her journal, who witness their journey, the postings are an occasion of grace.