Barbara and I woke early Friday morning. We had taken a gamble on my hunch, based on an article I had found on the internet. The day before had been an unqualified disaster. Avner destroyed personal possessions, taken a stab at ruining his most important friendship and scared us as his parents. We chose between calling for emergency services to have him involuntarily committed or going with the hope that he would fall asleep and we could move him to the hospital the following morning without waking him. That time had come. I had printed the Wikipedia article about Kleine Levin Syndrome.
Barbara and I woke early and dressed. We made a quick and utilitarian breakfast, assuming it might be a while before we get the next chance to eat. Cautiously, we climbed the half flight of stairs to where Avner’s room and the guest room are located.
Avner’s room remained a mess from the previous night. He tore open an Angry Birds pillow the day before and the styrofoam beads still covered every surface in the room. Books, pulled off of shelves and other belongings littered the floor. Everything in the room looked like collections of heaps. The bed was the tallest heap and Avner was heaped, face down on top of the bed, asleep in his underpants.
We knew from experience about the dangers of waking Avner. He could lash out, hitting and kicking or run away and try to hide behind a closed door. However, when he slept he could remain oblivious to his surroundings. For more than a year, he had been falling asleep in restaurants, leaning against Barbara for support Or just lying in her lap if we sat in a booth. We believed that we could dress and move him without waking him, if we moved slowly and cautiously.
It seems odd to me now, that while moving a sleeping child to the hospital, we concerned ourselves with seeing that he should be properly dressed, but we often cope by relying on habit and ritual. It never occurred to us to get to the hospital without dressing him. Who would be embarrassed? He was asleep. He didn’t care.
Even so, we dressed him completely, pants, shirt, socks and shoes. We swung his legs over the side of the bed and leaned him forward, so that he naturally draped his arms over my right shoulder. I crouched beside the bed and stood up, with Avner in a fireman’s carry position over my shoulder. He was already over five feet tall and getting too big to carry easily. I managed to get him through the doorway and down the stairs to our livingroom.
I put Avner down on the sofa beside me as Barbara went ahead of us and opened the passenger door of her Rav 4. We figured that my Prius was too low and the doors too small to place him in the car without waking him. I draped Avner over my shoulder again. I lifted him and carried him through the kitchen and the door to the garage, down the two steps out to Barbara’s car.
I walked around the open car door and placed Avner in the front passenger seat. After seating him, as gently as I could, I swung his feet into the car, I pulled the shoulder belt around Avner and buckled him into place.
Avner stirred. We explained that we were taking a short ride and he drifted back to sleep. I closed his car door. I got into the back seat and Barbara drove us to the hospital.
Asleep and Fighting
Avner still slept but not completely at peace. He wouldn’t be moved. I walked into the emergency department. I tried to explain the situation and requested help getting Avner out of the car. They told me that the patient would need to come in voluntarily but they could let me use a wheelchair.
Avner was unbuckled and refusing to leave the comfort of the car. I returned to the nurses station. I explained that our son wasn’t really awake but he refused to leave the car. I needed assistance getting him out of the car. A reluctant nurse followed me out to the patient drop-off. She tried to get Avner into the wheelchair. He was nonverbal but unwilling to move. He held the grab bars above his seat and tried to curl himself into a protective ball.
After a few minutes of that exercise, the nurse understood our dilemma and called for assistance. After some conversation about how to remove our son from the car and a few more fruitless attempts, they decided that a gurney was a better solution than the wheelchair. It took the coordinated effort of five nurses to get Avner from the car to the gurney.
Immediately, Avner snatched the fitted sheet from the gurney and cocooned himself within the sheet. He curled into a ball in a face down position. They wheeled him directly into an exam room.
The emergency doctor came into the room and a nurse informed him about the patient’s presentation and, how he came to be wrapped in the sheet and that they had not been able to get vitals. The doctor reached into his lab coat and pulled out a pair of scissors. Without comment, he cut through Avner’s makeshift cocoon. I offered the Wikipedia article to the doctor.
A nurse tried to take Avner’s arm to put the blood pressure cuff around it but he pulled it back quickly. To us, he was clearly asleep but the hospital staff believed otherwise. The doctor requested sedation and left us in the room with Avner.
I stepped out of the room and started making phone calls. I let my parents know that we were at the hospital with Avner. I called our friends Barb and David to let them know we had brought Avner to Emergency and we were hoping to learn if our KLS hunch was right. Barb is a pediatrician who now practices law. She mentored another pediatrician who also practices psychiatry. Barb was very skeptical about the diagnosis.
There was a list of reasons why I was probably wrong. Kleine Levin Syndrome is extremely rare. No way would I be able to properly spot KLS as a parent. Avner’s hypersexuality wasn’t severe enough. In her opinion, it was just adolescent acting out.
Barb called her former student. She had seen a KLS patient as a student. The attending physician showed the patient to the medical students with the explanation that they would never see another KLS patient in their careers. This cemented her conclusion.
A woman with a radiology cart came to Avner’s exam room. The nurses appeared almost instantly to explain that the patient was potentially violent and not to return until sedation arrived. We continued waiting.
Waking Just in Time
Hours passed while we waited for sedation ordered for our sleeping child. In that time, Avner’s body relaxed and he stretched out on the gurney. We were still waiting for sedation when Avner woke peacefully on his own.
The radiology cart returned about the same time. We invited the woman with the cart into the room. Nurses who watched the room arrived at the door almost immediately to warn the radiology tech about Avner being potentially violent, only to find a fairly normal kid sitting up on the gurney talking with everyone in the room.
I asked Avner if he knew where he was. He replied “the hospital.” I asked him if he knew how he got there. He didn’t. I started to understand in that moment that Avner had been piecing his world together from visual context for some time. He had become accustomed to waking in uncertain circumstances.
Nurses started filtering into the room. Could they take Avner’s blood pressure, they asked? He agreed. What about placing an IV line for blood draws and/or medication? He explained that he didn’t like needles but reluctantly agreed. The doctor joined the parade of people now coming and going from Avner’s exam room.
Avner’s case now warranted attention. The doctor agreed that something unusual was happening. He began the process of admitting Avner. They ordered a head CT. In the mean time, Avner was hungry. He wanted a burger. Barbara handled the logistics of getting the burger to the emergency exam room, against general policy but with the blessing of the doctor.
I followed Avner in the gurney up to the CT. The radiologist recognized me immediately from my bone biopsy the previous week. “You’re back?” they asked me. I explained that it wasn’t me for me , this time. It was for my son.
Avner and news of him appeared to move more quickly. We were out of radiology and back in the elevator to Emergency. Barbara had Avner’s burger. A hospital representative told us that a private room on the pediatric floor was being prepared. More history was taken. Insurance information was processed.
Avner ate lunch. I called my mother and took calls from the few people who knew where we were. At some point, the Emergency doctor looked at my Wikipedia article and told me to share it upstairs.
With the room prepared and Avner admitted, we were escorted from the emergency department to the elevator to the second floor pediatric area. Across from the elevator as the door opened, a phone hung on the wall to call the nurses station from the alcove. The person wheeling Avner notified the desk that we had arrived and the automatic door swung slowly open. Avner’s wrist band was checked at the desk, Barbara and I were issued wrist bands to identify us as Avner’s parents.
They wheeled Avner to the end of the hallway. It was the last door on the left. The ceiling tiles were painted by children who had been in the hospital. A palm tree was painted on the wall in the corner next to the bed. The room had a chair that converted to a narrow bed for an adult to stay with Avner and a rolling table for food service as well as a small cabinet with a phone. Opposite the bed, Avner had a tv and a DVD player. We were informed that the nurses station had a library of movies, if there was anything that Avner wanted to see and we could also bring our own movies from home. However, all the sound played from a tiny speaker on the remote control in the bed.
A couple doctors came into the room and introduced themselves. The older physician said that Avner made an impression in emergency. I offered the doctor my printed copy of the Wikipedia article. He took some time to read the article and handed it back to me. “You make a compelling case,” he told me. “But we’re not qualified to make that diagnosis here.” However, they were lining up all the specialists who could help eliminate other conditions, while Avner was at the hospital. There would be an MRI and an eeg.
One person he seemed eager to consult was their genetics specialist, but they were out for the weekend. Lab work was ordered. Avner got comfortable in the bed, sipping on a Sprite. He found a movie to watch.
Barbara and I started to work out our watch rotation. I took her keys and made my way out to the parking garage. One way or another, this path led to a diagnosis.