Today was not sunny, but today James got to go outside. James is seven years old. Today, he was allowed to drink ginger ale. He’s never been allowed to drink what he wants. He hasn’t left the hospital in weeks.
Since James was born, he has had an array of complications. He’s suffered numerous heart attacks, a nearly fatal hemorrhage, a stroke, renal failure, and has lived most of his life on dialysis. His doctors have tried heroic measures “to save him,” but so far they have only prolonged his life. James is still dying. He’s rejected two kidney transplants and is reliant on extreme doses of epinephrine to keep his blood pressure high. The epinephrine cuts off circulation to his feet. Sometimes he complains his feet hurt. He says it feels like he’s walking on pins and needles.
His mom is strong. She’s never cried. His doctors and nurses have cried, but his mom is strong. Sometimes she’ll allow her eyes to water, but then she’ll regain composure and continue to stand by James’ side.
James loves SpongeBob. Almost every time I walk by his room, he’s sitting up to watch it on the TV. Last week, Dr. Wilson interrupted his SpongeBob episode to introduce me to him. He was slow to turn his head, but when he looked up, I saw he was smiling. He said it was nice to meet me.
James’ newest complication is a fatal problem relating to his heart valve. The doctors think he’s going to die if it’s not corrected. The heart surgeon says there is a 100 percent chance that more complications will result from the surgery. He also believes there is a 50 percent chance that James will die during it. James’ mom must choose if she wants to go through with it. She is given this cruel choice. She could put her son through another surgery, and she may lose him. She could choose this, or she will lose him. Could you choose to let him die if there were still a chance? Does she even have a choice? James’ mom agreed to the surgery.
When the heart surgeon was notified, he was displeased. Why would someone elect a surgery when there was a 100 percent chance something would go wrong? He did not want to play roulette with this child’s life. After some reconsideration, he told James’ mom he would not do the surgery. For the first time, she showed true emotion. She was relieved. James did not have to suffer through another surgery. He could die in peace. She felt like she had done everything she could.
James can now drink what he wants. He is not controlled by fears of a fluid overdose. He often asks for French fries to accompany his SpongeBob episodes. Today he was pulled through the PICU on a wagon waving like he was on top of the world. The person pulling the wagon pulled him onto the elevator and took him outside.
James’ mom has given an order to resuscitate James if she is not by his side and cannot get to the hospital. But, she knows James is dying and if she’s by his side, then no medical intervention will be used to prevent him from slipping out of this life.
Today when I left the unit, James was crying out in pain, but today James got to go outside.
Author’s note: All names have been changed to preserve patient privacy.
Contributing Writer
Eastern Virginia Medical School
I am an MD candidate in the Class of 2017 with an interest in primary care and underserved populations.