finding normal

The surgery went well, the post-op pain management surprised all with its ease, and "the boy who could" made it home.  The boys were both delirious with delight as we drove through Tennessee in the early morning.  It was snowing--big, wet flurries that blew about and melted on landing, except where they made a few slick spots on the Cumberland Plateau.

Now we are home, and the work sets in.  FuXia is in the tub, Shane is at school with a performance tonight, YoYo is playing with his cars while he waits his turn in the tub.  Every night FuXia has to shower or bathe to clean his pin sites.  Each of the fifteen "pins"--some slender wires, some 1/8" posts--enters his leg from the fixator, and each has to be cleaned individually every night to avoid infection.  MRSA, or staph infection, is a risk with this type of appliance, and it can travel with alarming speed from an infected wound on the skin's surface down the length of the wire to the bone.  Staph can actually colonize on the wires and pins inside the leg, much as with a knee or hip replacement.  For this reason, FuXia is now on a maintenance antibiotic twice a day.  His appliance, being steel, would easily tear holes in our tub, so I've lined the bottom with interlocking floor mats (created for exercising) that I found in a sporting goods store.

We have a loaner wheelchair, with footrests that raise to keep the fixator leg elevated at all times.  We rest the leg on a pillow so its weight doesn't agitate the pins in a manner that tears his wounds larger.  I'm told that as his femur is coaxed into growth, it will respond at a quicker rate than his layers of skin will be able to expand, so his progress will be measured in part by torn skin around the upper pins.  When we travel, I put the pillow on a small cooler just in front of him, so he can elevate his foot.  In bed, he lies flat on his back, foot elevated on a pillow, a blanket roll propped in between his legs so the weight of the fixator doesn't tip sideways and tear his skin or put undue pressure on the pins.

He sits sideways at the table.  There are two pair of pants he can currently wear, both gray basketball-style pants with snaps, a full size larger than his non-exfix pants, to stretch around the appliance.  The three pins in his foot prevent us from using a sock.  I'm fiddling still with a piece of fleece generously shared by Chris, the incredibly hospitable friend who opened her home to us for Thanksgiving.  More on that story later.  I hope to fashion the fleece into a soft shoe-a kimono slipper of sorts, especially for the mornings like this one, when we rolled out to school in 25 degree frost that looked like a dusting of snow.

FuXia tires easily.  Today he went for a full day of school.  Yesterday, he tried a half day, and by the time evening came, his pain had gotten ahead of him, and he requested morphine for maybe the fourth time since he left the hospital.  A few minutes later, he threw up.  He was asleep by 7 pm.  This afternoon, I suggested a nap as I rolled him through the door, and he didn't protest.  Though he slept nearly two hours, he was glad to be back in bed by 9, weary after dinner and his bath.

This is our new normal.  For a season yet undetermined, we will find a new rhythm and lean into it.  I am so thankful for Christmas on the horizon.  We are marking Advent with the children for the first time, and the anticipation of it alone has been therapeutic.  I feel the excitement of Christmas will help ease our hardest days.  As I drew the flannel quilt around him tonight, FuXia indulged in a rare moment of confidence, grinning shyly, his eyes dancing.

"Last Christmas I had surgery, this Christmas I have this, but maybe next Christmas I will be finished with the surgery.  Maybe next Christmas I can walk without the walker.  Maybe I will be taller.  Maybe I will even be tall enough for the star on the tree..." and here he motioned topping the Christmas tree with our glittery silver star.  I tried to speak and found myself crying for joy and hope, perhaps the first time I've not been able to contain myself with him.  It was all I could do to hug him close, and he giggled at my tears and threatened to tell on me.


If I feared that I was not close enough in heart to mother him, if I worried during surgery that my heart was still too strange to him to instinctively know how to comfort him or ease his pain or give him courage, the fear is gone.  I am this boy's Mama forevermore, and he is my little boy.  That is a good normal, I think.