National Rehabilitation Hospital

Yesterday I was discharged from outpatient physical therapy at the National Rehabilitation Hospital in Washington DC.  NRH is on the same medical campus as Washington Hospital Center and Children's Hospital.  I've quite a bit of history at all three.

Johnny and Tommy were born at Washington Hospital Center.  Johnny underwent three open-heart procedures by the age of four and multiple related treatments at Children's.  After he suffered what amounted to an arrhythmic attack a week before he was to graduate from St. Jerome's grade school, he was rushed back to Children's.  Rendered a non-verbal quadriplegic because the oxygen to his brain was blocked during an incorrect CPR attempt, he was admitted to the NRH/Children's Hospital ward.

I'll save the details of being blocked from seeing him during his first few days there for a later blog.  Suffice to say, the staff at NRH was outstanding.  Johnny was responding to his physical therapist.  The nurses were as kind as (in my case kinder than) many blood relatives.  The doctors exceptional.  The same can be said for the patients, their families, even the security folks.  Often as I left, during the hours you are not sure count as night or early morning, a guard they called "coach" would stop me and say, "Don't worry, they do miracles, here."  It always brought a smile.

By brief stint at NRH this past month or so was twice a week to help get some strength in legs that were less than mobile prior to my spinal surgery.  The left, the one that bore the brunt of pain, had atrophied a bit more than the right.  So it was the object of most of the exercises.  I have to admit that each week the residual discomfort (minor) diminished and equal amounts of strength and confidence appeared.  As I went through my paces I would look around at the patients and kinda searched in case Johnny's therapist might still be there.  

Each visit, each search for a parking space in the adjacent garage, each time I walked to the front desk for an ID tag, brought back memories.  

At nights spent with Johnny, the nurses would say, "here's dad" then tell me Johnny was inconsolable no matter who was there including his mother until I appeared.  Then, they said he would quiet down.  I suspect he was on his best behavior when his young therapist was present.  He'd brighten when she walked into the room.  

Once in his room I would play songs by Andrea Bocelli.  I tried to keep the music quiet but it filtered down the corridor and on more than one occasion I was told how much the nurses appreciated the soothing music.  I'd talk to Johnny and ask if he could do minor things like touch one finger to his opposite hand.  He would try.  You could see movement towards the goal.  I would change his diaper if necessary then watch as he dozed off to sleep.  I could tell by his heart rate when he was in his deepest sleep.

I will always hate (that's the correct word) the anti-male bias of the current Maryland court system dealing with custody of children.  It's as real and hurtful as the racist Jim Crow laws that still existed in the state in the 1950s.  Any time a father, me, protested that the doctors were being told misleading information, I was deemed belligerent.  My observations about his condition were totally ignored if contradicted by his mother (not to brag, but on Mother's Day, both boys pushed me to stand when all the mothers in the church were being honored because, in their words, "Dad you are more of a mother to us..." I'll not mention the rest.  But stand I did).  And, despite the progress being made at NRH, he was uprooted and placed at Kennedy-Krieger, an adjunct of Johns Hopkins in Baltimore.  Nothing against KK.  It's just that NRH was more personal.  KK more a medical factory.  

I'm convinced that had he stayed at NRH, Johnny would be alive and thriving today.  Nothing against KK.  They are very competent, very lovely folks.  It's just that Johnny's comfort level was disrupted and he shut down there and would not cooperate no matter how kind his keepers.  I think he didn't like Baltimore.  Before his episode he was taken from his friends at St. Jerome's in Hyattsville to the Baltimore Campus of Lab School were he learned: he's not rich, that the F word was acceptable in class, and that a certain teacher found it amusing that he was beaten up each day by the class bully (that's what Johnny said and I believe him).  Don't get me started.