The Rider Chronicles 14 – Rider’s New Forehead: Waiting

We had been dreading this November day for weeks ever since his parents’ difficult decision to go through with the operation.  A few months earlier Rider was diagnosed with ectopic craniosynostosis, a condition in which his two forehead parts had fused together too soon.  An infant’s skull is made of several pieces of bone that are designed to be able to expand as the brain grows, but not the two that made up Rider’s forehead.  They had fused too soon.  Doctors determined that he had suffered no brain damage and likely wouldn’t, but that his face and head would appear increasingly abnormal as he grew up.  Though we all realized this reconstructive surgery was necessary, it didn’t make it any easier.

By the time we arrived at the Upper Eastside NYC hospital at 7:30 (after waking up at 5 a.m. to catch the train in time), Rider and his parents and an aunt had been there already for a couple of hours.  He needed to be thoroughly examined to make sure he was infection free.  His little body would need every ounce of its strength to get through the surgery.  This type of operation, involving a cut from ear to ear across the top of his head, peeling down the scalp to reveal his skull, then cutting, removing, reshaping and replacing the pieces of his forehead, has a very good track record, but it still scared us for Rider to be under the knife. 

I was glad we had spent the week-end before the surgery with Rider and his parents.  He had been his usual happy self, smiling, interacting, reminding us how fast he was growing up.  The thought made me, made all of us, sad and a little scared, during those fun times, that he soon would be facing a major ordeal.  My only pre-surgery interaction with Rider that morning was a brief visit in a small exam room.  My little grandson looked small and helpless in a hospital gown big enough for a four-year old.  The sight of him swimming around in that thing would have been comical in any other setting; then, it was just melancholy.

Surgery began sometime around nine.  Rider’s resourceful grandmother had brought cards and game ideas to keep the six of us occupied in the waiting room.  I will not draw out this telling the way the day drew itself out, hour after long, nervous hour.  From time to time over the course of the day another doctor, nurse, or patient advocate would give us news which we devoured like starving people.  We were grateful for those updates but never completely satisfied not knowing how much longer the surgery would last.  We had first heard three to four hours, then four to six.  He wasn’t out of surgery until 5:00 that evening, nearly eight long hours after it began.  We were relieved and exhausted, and anxious to see Rider again.  Well-meaning, optimistic staff kept telling us he’d be in his intensive care bed soon which stretched to almost three hours later.  So hard to wait for our poor, little guy.

When we finally saw him he looked so, so small lying in the center of a large hospital bed, head swathed in white gauze the size of a football helmet, tubes and wires all around, active, happy Rider now still and solemn, on medication to help with the pain.  So hard for us to see him like that.  At least his breathing and heart-rate were what they should be, and the doctor who dropped by while we were there said he was doing well, was strong, and just needed time to heal.

We left the hospital, finally, nearly thirteen hours after we arrived.  A dreary, cold rain poured from the sky, somehow fitting our moods.  We rode in a taxi that got stuck in bad traffic, backed up because of preparations for the Macy’s parade scheduled for the day after tomorrow, Thanksgiving.  Not wanting to miss the train, we got out of the taxi and walked the last several long blocks along the rainy, busy city streets.  Hungry and exhausted, we wolfed down some pizza at a shop in Penn Station and were comforted.