A Series of Questionable Decisions Made Affecting Our Son’s Care.

The day began with my wife Jeri and me holding hands protectively over the inert body of Trey, our six-year-old son. Machines were keeping him alive. We had constantly whispered to him. “You are strong. We love you and are so proud of you. You will feel great when you wake up.” His teddy bear stood watch at his side.

“What are you going to do?” we had learned to ask the nurses.

There had been  It had been twenty-four hours since the surgery to save his life. He had a huge abscess in this neck that had begun as a simple strep throat. I had waited too long to take him to a doctor and now my son might die. As a third-year medical student now, it was my daily job to check X-rays after intubations to make sure the tube was in the right place. If it were placed too far down, it would go into the right main bronchial airway. It would deny air to the left lung, which would collapse on itself. The morning after Trey’s surgery, I went to look at his chest X-ray and was astounded to see the tube was indeed in the right main airway. No one had checked following the surgery. It appeared, to my inexperienced eyes, that the left lung had collapsed. I asked the radiologist on call to look, and he uttered, “Oh my God.” He called up to the pediatric ICU and spoke with the nurse, who called the doctor on call. That resulted in a quick response to pull the tube partially back out until breath sounds could be heard on both sides. Another X-ray was ordered, and a series of orders were written to increase the respirator pressure PEEP (Positive End Expiratory Pressure) and add bronchial dilating medicines to the routine every two hours.

A quick explanation and a quiet apology were given. We were not happy.

We resumed our watch and noted his heart rate was increasing, but I could hear breath sounds on both sides now with a stethoscope I borrowed from a nurse. The left side was faint. I watched the overhead monitor in our private room, and the heart rate had climbed to 200. It was due to the albuterol – asthma inhaler – they were giving him regularly. At midnight, the nurse came in and began to give another dose of albuterol. I requested her to stop.

“His heart rate is too high to give that medicine now,” I stated with certainty. “Please don’t give it.” Jeri nodded in support.

“These are the doctor’s orders for tonight. What do you want me to do? Wake up the doctor?” she queried in an irritated tone of disbelief.

“Yes, please, ma’am, I wish the doctor would come see my son.”

I did not know it at the time, but we had the legal right to refuse treatment. The nurse frowned and left the room. When the doctor on call came into the room, I pointed out the heart rate and my concerns about giving a drug that would make it faster. He agreed.

“And, sir, I wish you would look at his arms and legs. They’re quite swollen.”

“Well, Bob, that is common, because of all the IV fluids we’re giving him. Don’t worry.” And he left.

“My son might die!”

Unconvinced, I left Jeri in charge and started research on my own. I reviewed his lab work and saw his sodium levels were quite low, and the urine-specific gravity was also very low. He had gained four pounds of water weight. It seemed like the Syndrome of Inappropriate Antidiuretic Hormone Secretion or “SIADH” that I had learned about, and I recalled it was quite dangerous. It could cause the brain to swell, and it always caused the edema I was concerned about. “System Inappropriate Anti-Diuretic Hormone” secretion had many causes, and it made the body swell. I started looking for causes. Nothing I read seemed to apply to my son until I stumbled on a paragraph that reported it was seen in ventilated patients when the air pressure was set too high.

Trey’s PEEP (Positive End Expiratory Pressure) was set at the maximum recommended level since they were re-inflating his left lung. It had been going on all day, and both lungs were clear. I found his nurse and told her of my concerns. She refused to call the doctor again, and we felt helpless. The next morning, as doctor-rounds approached, I stood bedside and waited. When the doctor arrived, he was in a hurry. He had lots of patients to see. I blurted out my rehearsed research findings and requested that the PEEP be turned down. Third-year students (rightfully) have little credibility in the ICU. I was thanked and reassured, but they made no changes.

I was a father first, so I rechecked my medical facts and waited. The doctor would come back. The nurse was sympathetic but not convinced. When he came back later that morning, I was waiting. We had more time now.

“Sir, respectfully, my son has had his right mainstem bronchus intubated, which collapsed his left lung. The on-call doctor last night canceled the medication that had his heart rate over 220 after I requested him to. His PEEP is set high, and that may cause SIADH. I know this is unusual, but his lungs have clear breath sounds bilaterally, and I would appreciate it if you would turn down the PEEP pressure. He’s swollen all over, and his urine is inappropriately diluted. Please?” I pleaded.

The pediatrician listened but was not convinced. I was a medical student and had limited credibility, but was also a parent, and I might be right. He nodded and reached for the chart to write the order to reduce the PEEP. He did not seem convinced or happy.

“Thank you, sir,” I mumbled. “We will be here all day, monitoring him.”

During that day, my mother and younger brother arrived by plane from Virginia to help at home. I had called them in a helpless panic, and they came without hesitation. By 11 PM, I was tired and needed to go home to check on our daughter. I kissed Jeri, who was “on guard,” and went down to our ancient Chrysler Town & Country station wagon. It was dark out, but the car was distinctive. All four tires were different. We had bought them, one at a time, by getting discarded tires and patching them for $2. Sitting quietly in the driver’s seat, I searched for the keys in my pocket and tried to find the ignition. My hands were shaking, and my breathing came in choked sobs. I could not start the car, so I sat there, wanting to let it all out. I needed to cry but was not sure how. The pain in my chest needed release. One tear and one sob found a voice. I took a few deep breaths, found the keyhole, and started the car. The radio blared. I drove slowly home and called my mom.

“My son might die!” I sobbed.

My mother and brother arrived by plane in the morning. My brother decided on his own that he could help too and interrupted his own life to do so. He and Mom provided comfort and care for our younger daughter and us while we stayed at the hospital and prayed. This tale ends happily, with our son released from the ICU after four days. It was the beginning of Christmas vacation for our children’s school and me. We would be a family again and help him heal together. His swelling resolved, his voice returned, and he ate ice cream. Doctors had saved his life with immediate action. With Christmas a week away, I would be with family during the daytime again. Brother Bill and Mom returned home. Their generous help had proven invaluable.
Over thirty years have passed and my son has two young children of his own now. His son is named Robert Adams IV. My brother’s selfless gift of himself at a time of crisis is still cherished, and will never be forgotten.

From that day forward, I walked into the house, removed my germ-covered white coat, threw it in the washer, and washed my hands. The stethoscope was cleaned at work with alcohol swabs between patients. No kiss hello was permitted until the washer top closed. The next month, a ten-year-old arrived in the emergency room with the same neck abscess as my son had. An experienced physician had identified it immediately. Alas, before the needed surgery could happen, his abscess eroded an adjacent vessel. He became septic and died.

This experience profoundly moved me as a father with a critically sick child. My son and namesake had come as close to death as he could and survive. The emotions of fear and helplessness stay with me in my memory always. It made me a better physician when dealing with the inevitable losses my patients would experience in the years to come. Family helped us to survive a situation so grave that words do not do it justice. For that, we will always feel blessed and grateful. Thanks again, Bill.

This story is from my new book Swords and Saints A Doctor’s Journey.