The End of the Road, or a Tale of Two Viruses

The end of the road:  this was the literal translation we were given for Bundibugyo.  So you'd think I'd be used to living there.

But I'm not.

Because the end of the road where I've been camping out lately is called the ICU.  This is a 5-bed unit shared by adult and paediatric medicine, with the most directed nursing care in the hospital, the best monitors, the only ventilators, the most space, and the smartest doctors.  Well, on the medicine side anyway.  I am a bit of a stretch, an intensivist-imposter.  Which is rather tricky because lately the paeds patients have outnumbered the adults.  One day this week I had 4 of the 5 beds and had a baby waiting to move into the 5th.  This is a room that beeps and bustles, where lights flash and IV pumps smoothly push and ventilators sigh, where we rally to the emergency and ponder the best plans.  But it is also a room where a lot of people die.

The problem with the end of the road is this:  100% of the people we bring in would die in the next few minutes, hours, or at most days, without this care.  We generally can achieve at least a 50% survival, which is really a remarkable thing.  But that's hard to remember when half your patients die.  That much death gets pretty discouraging.

The last couple weeks I've had two girls in side-by-side beds with very similar presentations:  high fevers, seizures, incoherent speech, weakness, and rapid deterioration.  The 11 year old girl in bed 3 we think has Herpes Simplex Encephalitis, a viral inflammation of the brain.  And she's the happy side of that 50% story.  After an initial touch-and-go period, she responded to acyclovir which we have to give in a tube to her stomach since we don't have an IV form.  She's waking up, following me with her eyes, lifting her fingers when I tell her to.  The excellent physical therapy and nursing care just may carry her through.  

But the 3 year old in bed 4 came to the real end of her road on this earth on Tuesday.  "S" was a little Maasai girl, who suddenly developed fevers and seizures, an inexplicable downward course.  Her grandmother and I tried to communicate in Swahili which neither of us speak well, this wizened lady with her stretched beaded earlobes and bald head, me with my white coat and desperate questions.  The night she was admitted I was frantically reading about viral encephalitis because of her neighbor in bed 3, when the word "rabies" jumped out at me. "S" was hyper-salivating, foaming at the mouth.  She was hot, hypertensive, smiling and singing inappropriately at first, incomprehensible, and going downhill fast.  The next morning her father came in.  Had "S" ever been bit by a dog, I asked?  Oh, yes, he replied, about 3 months ago.  What happened to the dog?  They killed it, because it was a stray, aggressive, behaving strangely, and they feared it would bite others.  Oh dear.  Over the next ten days we watched "S" get worse and worse.  When she couldn't breathe on her own anymore we intubated her.  We tried to find a way to make a diagnosis, and sent samples out that will take weeks to be analyzed, hoped that it was something else, something survivable, something temporary.

And over those days, as we reluctantly drew closer and closer to the end of the road, I spoke often with "S"'s father.  Unlike many parents, he was unfazed by the ICU atmosphere.  He stood tall, like a man who was used to planning things, to being heard.  He asked questions, really good insightful ones.  He wanted data.  He remembered what I said.  He sat and stroked his daughter, talked, looked for signs of life. (His wife with her regal green beaded necklaces was sent home after a brief visit, to care for the baby.)  I could imagine this father unbowed by the challenges of fighting a lion with a spear.  On the last day of her life, we held a conference in our side room, with this father, his brother, the chaplains, the nurses, and me.  "S" was no longer responding to pain, no longer taking breaths at all.  She was gone, I believed, and it was time to withdraw the ventilator.  We talked and prayed and agreed, and then all stood around "S"'s bedside.  I removed the tube and held her hand, while the pastor prayed.  Children's hearts can sometimes beat on for a long time without oxygen, but "S" died quickly, without a flicker of motion or struggle.  I let go of that little palm.

Then there was the flurry of papers to sign, and questions about the body, about the bill.  But before they walked out, I shook hands with this Maasai father, and said sorry.  He gripped my hand so tightly, and started to cry.  Thank you, he said in Swahili, I know you did everything you could.  

There was something so poignant and real in that moment.  This tall thin man of the savannah, defeated by a disease we could not treat, grieving, struggling, the first crack in his authoritative control.  Yet in his moment of sorrow, holding on across a chasm of culture and education and everything, to say thanks for our effort in spite of our failure.

The end of the road is like that.  An emotional journey up hills and through quagmires, sometimes an unexpected turn, and then the abrupt, inevitable end.  Emotionally exhausting.  After two patients this week for whom I had to have those "this is the end of the road" conversations with their families, and one more who came abruptly from the theatre where he had bled profusely and arrested and was pulseless and unrevivalbe, well, that's a lot of death in a few days.  I'm spent.  

But the gripping hand of a parent who knows that we were in the struggle with them, the walking-alongside that occurs at the end of the road, is still a beautiful moment.  I suppose that's why I'll go back tomorrow, and the next day and the next, and keep beating my head against the end of this road, with a glimmer of hope that the path stretches on into eternity.