Back and forth…

It wasn’t long before it became clear to us that Jake wasn’t ok. The Remicade wasn’t working like we’d hoped. The Sarcoidosis /autoimmune theory wasn’t completely wrong- something was causing his body to respond, but they couldn’t find it. We were back and forth several times having excess cerebral spinal fluid drained and IV bags of prednisone. This bought us time… we’d show up at the emergency room, and the doctor would look at his file, and inevitably say, “There is nothing we can do for you…” I would respond, “We just need pain control until Dr. S. gets in and can admit him.” During one extended stay, they inserted a tube/drain into the spinal meninges to relieve the pressure. We found out later that the amount of pressure was unprecedented.  They were able to keep it under control so Jake remained coherent and alert. A young doctor was on rotation again and got to talk to Jake. “Man, I am so glad to see you again and talk to you. I was so afraid that before [when you were so incoherent ] you’d never be back [to normal].” No one had ever suggested the possibility it could cause permanent damage. When word spread around the floor that he was the valedictorian and planned to go to an engineering school, people treated him differently. I know people assumed, especially in the ER, he was out of his mind from drugs. His hair had grown longer and his beard was pretty scraggly.  All I knew was he was my baby, and I wasn’t ready to let him go.

Leave a Reply

Your email address will not be published. Required fields are marked *