From Sorrel King’s speech to the IHI Conference in 2002
Josie was 18 months old….In January of 2001 Josie was admitted to Johns Hopkins after suffering first and second degree burns from climbing into a hot bath. She healed well and within weeks was scheduled for release. Two days before she was to return home she died of severe dehydration and misused narcotics…
Josie spent ten days in the PICU. I was by her side every day and night. I paid attention to every minute detail of the doctors' and nurses' care, and I was quick to ask questions. I bonded with them and was in constant awe of the medical attention she received. Every time Josie moved or fussed someone would be quick to push her pain button. I tried rubbing her head and found that often this would settle her. Much to our relief, Josie was experiencing a quick recovery. Her burns were healing beautifully. She was sent down to the intermediate care floor with expectations of being sent home in a few days. Her three older siblings prepared for her welcome home celebration. We were told that no one had ever been sent back up to the PICU.
The following week her central line had been taken out. I began noticing that every time she saw a drink she would scream for it, and I thought this was strange. I was told not to let her drink. While a nurse and I gave her a bath, she sucked furiously on a washcloth. As I put her to bed, I noticed that her eyes were rolling back in her head. Although I asked the nurse to call the doctor, she reassured me that often times children did this and her vitals were fine. I told her Josie had never done this and perhaps another nurse could look at her. After yet another reassurance from another nurse that everything was fine, I was told that it was okay for me to sleep at home. I called to check-in two times during the night and returned to the hospital at 5:30 am. I took one look at Josie and demanded that a doctor come at once. She was not fine. Josie's medical team arrived and administered two shots of Narcan. I asked if she could have something to drink. The request was approved, and Josie gulped down nearly a liter of juice. Verbal orders were issued for there to be no narcotics given. As I sat with Josie, I noticed that the nurse on morning duty was acting very strangely. She seemed nervous, overly demonstrative and in a hurry. Uneasy, I asked the other nurses about her and they said she had been a nurse for a long time. Still worried, I expressed my concern to one of the doctors, and he agreed that she was acting a bit odd. Meanwhile, Josie started perking up. She was more alert and had kept all liquids down. I was still scared and asked her doctors to please stay close by. At 1:00 the nurse walked over with a syringe of methadone. Alarmed, I told her that there had been an order for no narcotics. She said the orders had been changed and administered the drug.
Josie's heart stopped as I was rubbing her feet. Her eyes were fixed, and I screamed for help. I stood helpless as a crowd of doctors and nurses came running into her room. I was ushered into a small room with a chaplain.
The next time I saw Josie she had been moved back up to the PICU. Doctors and nurses were standing around her bed. No one seemed to want to look at me. She was hooked up to many machines, and her leg was black and blue. I looked into their faces, and said to them. You did this to her now YOU must fix her. I was told to pray. Two days later Jack, Relly and Eva were brought to the hospital to kiss their beloved Josie good-bye. Josie was taken off of life support. She died in our arms on a snowy night in what's considered to be one of the best hospitals in the world. Our lives were shattered and changed forever.
Josie died from severe dehydration and misused narcotics. Careless human errors. On top of our overwhelming sorrow and intense grief we were consumed by anger. They say anger can do one of two things to you. It can cause you to rot away or it can propel you forward. There were days when all I wanted was to destroy the hospital and then put an end to my own pain. My three remaining children were my only reason for getting out of bed and functioning. One day I will tell them how they saved my life. My husband Tony and I decided that we had to let the anger move us forward. We would do something good that would help prevent this from ever happening to a child again.