Originally Posted: 2/1/2012
My very first patient when I started my job as a music therapist working with children with hearing loss several years ago was a sweet, lively second grader. His constant energy made it easy to forget that along with hearing loss, he had a host of other medical issues including a lung transplant as a baby. Although he was definitely all boy, he also was very sweet and sensitive, always thinking of others instead of himself. I saw him together in a session with two other boys his age with cochlear implants. During one session, all three boys were not listening, being silly, and overall misbehaving. I repeatedly redirected the children with no avail, and after the three “strikes”, told them that they had lost the privilege of choosing a toy from the treasure box at the end of our session. The other 2 boys took this all in stride, but this particular boy was devastated. When we walked past the door to the treasure box without picking a prize on our way to meet his parents, he cried and cried. “I’m sorry I was naughty,” he told me, “PLEASE let me have a prize.” Never again in the over two years that I saw him for weekly sessions did he ever have to skip the treasure box!
One day in November, the child life specialist approached me to see if I would be interested in following a patient that she worked with that had recently been transferred from another hospital into the ICU. As she described him to me, I realized the story was all too familiar. “Wait a minute, I think I know him,” I told her, “But what is he doing in the ICU?”
People who receive organ transplants are often living on borrowed time, and unfortunately, the average set of transplanted lungs only last 5 years. My little friend was now trach and vent dependent and back at his home hospital for end-of-life care. Despite the gloomy picture, when I first saw him sitting in the ICU, he didn’t look any different from how I had remembered him. Although we had worked so hard have him use his voice to speak, his sign language now came in handy as communicating with the trach almost seemed second nature to him. He looked anything but the average ICU patient- up dancing in his bed, playing on the iPad, watching movies, or taking strolls in a wheelchair around the unit. He remembered me immediately and asked me if I could be his nurse. I signed up for his team that day.
My little friend still loved music, and each night before bed, if we finished his bath on time, I would grab the music therapist’s guitar from the PICU storage room and sing him a few of his favorite songs. Then it was prayers with Dad and lights out.
Somehow I always knew he was waiting to make it until Christmas. Near the beginning of December, one of my fellow nurses asked me if I really thought he was going to die soon. “He looks great,” she told me, “What is he still doing in the PICU? Why don’t they just send him home?” Indeed as the month progressed, talk of sending him, at the very least, up to the floor, and possibly even home, increased. “Who knows?” another staff member told me, “He could still live for several years.” But there were subtle signs that he was declining. He was becoming increasingly difficult to ventilate, his carbon dioxide levels were rising, and he had started complaining of chest pain. He had not eaten much in weeks and was sleeping more and more during the day. Often times at night before bed, he would talk about “becoming an angel” and being scared to go to sleep in case he did not wake up again.
However, even I started to believe that he would be going to the floor soon. His parents had chosen to make him a DNR, and as several people reminded me, there was no need for him to be in the PICU any longer if he was not a full code. The plan was to send him to the floor on the Monday after Christmas.
On December 23rd, my last night with him, he looked better than I had seen him in weeks. He spent the night finishing up his Christmas list to Santa, wrestling with Dad, and playing board games. Dad decided that he could stay up late because it was ALMOST Christmas and he was just too excited to sleep. I grabbed my guitar and we had an extra long sing-along. After exhausting all of the Christmas tunes he knew, he asked me “Can you sing the “Brush Your Teeth” song? ”
“Really?,” I asked, “You want to hear the Brush Your Teeth song? Ok.” So I played it. It was the first time that he had ever asked to hear songs that we used to sing in our music therapy sessions together. We went on to sing “The Opposite Song,” “Going on a Picnic,” and several others that I had made up to address the various language concepts that we had been working on. I was surprised that he still remembered each one and was able to sing along with me. We ended with the good night song, Dad and I tucked him in, he blew me a kiss, and fell asleep.
The strange thing was when I got home from work that morning, even though it had been a wonderful night, I couldn’t sleep. Something was not right. The night before he had begged and pleaded with me not to be sent to the floor. “I’m too sick to go up there,” he told me several times. “I like it here. I have 9 nurses that I like here. I only have 1 nurse that I like up there.” I reassured him that there were many nice nurses upstairs, and that it would be better up there because he would not have to see all of the really sick kids or be scared by the sound of the code button. The way our unit is set up, we keep little blinds open between the rooms so that we are able to see both of our patients at all times. He would often see the kids in the other rooms, with breathing tubes in their mouths, and become scared that the same thing would happen to him again. Many times I had to reassure him that he would never have to have the breathing tube in his mouth again. But seeing the other sick kids always made him very anxious. Everyone thought it would be better for him upstairs. But somehow I had a feeling that he did not have much time left, and I think he knew the same.
Sure enough, on Christmas Day, my little friend’s condition worsened. He had to go back on “the big machine,” a more powerful ventilator than his home vent, and a morphine drip was started to ease his pain. Several days later, his ventilator was withdrawn, and he earned his angel wings. He received his wish to die peacefully and pain-free, and for that I am forever grateful.
I became a nurse to work with children like this. To have the privilege to be present in moments such as the one we had on our last night together. To make a child’s last month on Earth be special and memorable- for both the patient and their family- even if it is spent in the hospital. To help them transition to their next life in the most peaceful way possible. These things can not be achieved without a team of healthcare professionals working together to help the family achieve these goals.
I feel incredibly lucky to have been a part of this child’s life when he was healthy, as well able to help him when he was sick. And throughout the entire time, to have the music to link these moments together.