The Day I Saved Andy’s Life

I am not in a life-saving profession - at least not in the traditional medical interpretation of life-saving. I was never really interested in wielding that kind of power, although in many ways I think that I have learned that traditional life-saving power is easily reducible to a little chemistry, a little anatomy, a little slight of hand and technical know-how. Little else.

This is not meant to downplay that technical expertise though. Actually I am humbled by those who perform such acts on a daily basis.

I saved someone's life once. That is what I have been told anyway. I like to tell this story because the moral is that sometimes you might be in a position to make a difference, even if you did not put yourself in that position, and even if you had no intention of making a difference. I think that is important information to have tucked away for reference purposes.

One day my phone rang and it was my buddy John. John was an itinerant therapist in the truest sense of the word - meaning that he participated in his health care career episodically. Last I knew he was an FBI agent. Anyway, he told me "I told my sister-in-law to call you because they are worried about their son Andy's development - he is around 16 months old and he isn't walking yet. They are pretty worried, and I think they are going to call you this afternoon."

"No problem, John," I replied. "I'll see them right away." As I hung up the phone I remembered what a good friend John was, and that I was glad to do this for him. For his family, really. Immediately, the phone rang. It was John's in-laws, and we made an appointment for that afternoon. It was a late appointment, after hours, but I wanted to accommodate them. Least I could do.

Because of seeing him so quickly, the parents were not able to get a referral - this meant that their insurance might not cover the evaluation. As they went through the intake process and I listened to them debate the potential cost I grabbed the paperwork from them and told the receptionist we would worry about the insurance later.

"Andy's not been feeling well lately," his parents stated as I took a history. He had achieved all of his developmental milestones in a typical fashion but at 12 months everything seemed to stall. He stopped pulling himself up to furniture. He never took an independent step. And he was chronically ill: low grade fevers, sleeping more often, vomiting. His pediatrician was stumped, and kept recommending symptomatic treatment. Because Andy was not walking, the pediatrician agreed to refer him to a neurologist, but the waiting list was long and the appointment was not for another month. The parents couldn't wait that long, happened to mention it to John, and that is why they came to see me. I am not a neurologist, nor a diagnostician, but I am trained to complete developmental evaluations - and that would at least be a start.

Andy was cachectic. Pale. Clinging to his mother. He was clearly ill. I listened to the parents concerns as they explained the change in his behavior over the last couple months. They also expressed their concern that they couldn't see the neurologist as soon as they wanted to. Andy demonstrated typical development for fine motor skills, but when he reached for toys I noticed a subtle unsteadiness in his movements. The subtlety is difficult to describe... my initial impressions were that my eyes were de-focusing. As I concentrated strongly I could see that his entire body had a very slight shakiness to it. It was not just his hand or arm; the shaking was central to his trunk as well. It did not measurably impact on his performance, and he was able to crawl for mobility. When he was placed in a standing position he would become very upset and cry uncontrollably. "He does that every time we try to make him stand," the father stated. "It's as if he doesn't like the way it feels when he stands."

"Always listen to parents," I repeated in my mind as I tucked the information away. Although parents generally don't know the medical terminology or reasons, they are usually best at describing and identifying symptoms.

As I completed my observations, I was moving Andy's legs and arms to measure his range of motion and muscle tone. His ankles felt a little tight to me, but that is not always uncommon in children that are growing quickly. I quickly stretched the muscles to elicit any abnormalities in muscle tone, but there were none. Whimsically, I tapped on the patellar tendon to check deep tendon reflexes. His leg shot out *briskly* - moreso than it should have. As I tested these reflexes in other areas I noticed that they were all quite brisk. "Wow," I thought to myself. "I generally don't bother checking these reflexes, particularly in a child with no known problems, and I was glad that I took the time to check." I talk to myself all the time while completing evaluations.

I sat back to consider my observations, and started reaching for words that I could say to the parents. They wanted an opinion. They wanted to DO something to help their child. This is the moment when the therapist is on the hot seat.

As we began to chat, Andy burped, and then vomited. This was not your typical regurgitation of recently consumed liquid that can accompany a baby's hearty belch: this vomit came from someplace deeper, and it shot out of his mouth exorcist-style all over my cabinets. This is where having children can help a therapist keep their cool. I could handle vomit. I went into cleanup mode, shutting down my sensory awareness of smell and touch as I cleaned up. "I can do this," I thought to myself - just as I had done many times with my own children. "Dear God," I prayed quietly, "please help me do this."

As the parents bustled alongside me, cleaning up Andy, cleaning up everything, they worried together about his being sick, about how they had just been to the pediatrician yesterday and he said to just let 'the virus' run its course. "Just keep hydrating him," the doctor told them... I don't know if it was the vomit, or my own mind spinning, but their voices fell into the background as other pieces of information came swirling together into a logical and deadly serious pattern.

Andy had a history of unexplained low-grade fevers. He lacked energy. He *looked* sick. His motor development stopped, and he had no tolerance for being in positions where his balance was challenged. He had that very slight... ataxia? "Ataxia," I said to myself. "That is what I am seeing. And brisk deep tendon reflexes. But I paused myself, knowing that I don't always even bother to check them. "Maybe they weren't that brisk," I said to myself as I tried to talk myself out of my observations. Then I continued to think... "Projectile vomiting???" Excusing myself, I ran to the phone.

In my office, I attempted to call the pediatrician, but could not reach him. I had him paged, but he did not return the call. My mind spinning, I phoned the medical director of our division. "Dr. Johnson, I have a kid here with..." as I described all of the symptoms. "I think I should send him to the emergency room, but I can't reach the pediatrician." Dr. Johnson, ever politically correct, told me - "You're on your own then. The pediatrician should be the one to make that call though, and as I am not there I don't know what to tell you. I suggest that you keep trying to reach the pediatrician." No help there.

As I walked back to the therapy room, I knew the parents would want an explanation. I considered the fact that they were worried about insurance coverage, and I knew that having no referral to the emergency room would really cost them some money. But as I walked I considered my experience. I read these symptoms before in my textbooks. I read them in charts of patients. I knew that I needed to trust myself. Without giving a single explanation or point of justification I told the parents with conviction, "I suggest that you try to see a neurologist sooner than your scheduled appointment. If you go to the emergency department you can insist that they call the attending neurologist." I swallowed the lump in my throat as I considered the charges they were about to incur because we had no referral to the emergency department. "If it were my child, I would go now."

Andy's parents looked at each other, looked at me, and without a word between them both responded, "Let's go."

I escorted the family downstairs to the emergency department, wondering if I would incur the wrath of the pediatrician, of the parents, and the ridicule of the emergency department staff. But I saw what I saw what I saw what I saw. There was no refuting what I saw. I provided a copy of my observations to the Emergency Department resident who read my notes with a cocked eyebrow. "This is a gutsy report," he told me. "I better call the attending."

I said goodbye to the family, trying to put the whole sequence of events out of my mind as I drove home to my own children. All night long my observations replayed in my head. Did I really see what I thought I saw? I am not prone to questioning myself. But I questioned myself all night.

The next day was a Saturday, and I was scheduled to work. I checked the computer system to see if Andy was discharged but it said that he wasn't. I decided that this didn't mean anything because billing entries are often a little delayed on the weekend. He may have gone home and it just wasn't recorded yet.

As I made my rounds in the pediatric ICU I looked up at the board to see where my patients were. I saw Andy's last name on the board, and I immediately ran to his bedside and grabbed the chart.

As I scanned the notes I read the diagnosis over and over again. Posterior fossa medullablastoma. As the tumor was so advanced they chose to operate immediately - that very night. I looked up to see Andy resting quietly in bed, the gentle whir of the ventilator pushing air into his lungs. The back of his head was shaved, and he had an externalized shunt to drain excess fluid off of his brain.

One of the medical fellows in the ICU walked up beside me, saying, "I hear that someone in your department made a good catch on this case. Neurosurgical service said his tumor was so big that it was a wonder he was not in a coma. He is lucky to be alive."

"Oh. Wow." I sputtered out, not knowing what else to say.

Andy had to have a second operation because they could not remove the tumor entirely the first time. He also underwent radiation treatments and chemotherapy. He survived, although he had some significant brain damage as a result of the tumor and the effects of all the treatments.

Andy became a regular at the hospital for the next few years as he went through all of this treatment. Each time I would see the family they would turn to any person that was walking by, grab them, and say, "This is the man who saved our son's life." I always thought to myself that it was really the neurosurgeon and the ICU staff who technically saved his life. I never got used to them saying this, but I always graciously accepted their thanks.

Last that I knew, Andy was attending school and living at home. He is blind, and severely mentally retarded. But he is a member of his family, and he is loved. And he is alive.

When I doubt myself, or when I think I should go home early, or if I accidentally let insurance issues get in the way - I think of Andy. And I think that sometimes you can make a difference even when it is not your immediate intention.


Anonymous said…
Thank you thank you for this story ...

Popular posts from this blog

Deconstructing the myth of clothing sensitivity as a 'sensory processing disorder'

When writing gives you the willies: Reconsidering 'tactile defensiveness'

On retained primitive reflexes