She was a beautiful three year old girl. Her name was Alexis, Lexi for short. Lexi was perfect in every way except she was brain dead. She was found face down in her aunt’s pool where she floated for more than 5 minutes.

Lexi could only lie on her side, she was blind, unable to swallow, blink or close her eyes to sleep. She was unable to use any of her motor functions and had 10-15 seizures a day. Tube feedings supplied her nutrition, a ventilator allowed her to breath and her family moved her arms and legs so she could turn every few hours.

The manual human functions we take for granted are profound. This beautiful little girl was being manipulated and cared for like a human puppet. The family was exhausted and her 8 year old brother was riddled with guilt because he was the one who left the gate to the pool open that claimed Lexi minutes later. During every visit I made to the family’s home, the grief and despair was so immense it could be cut with a knife.

How do you get through the guilt, the blame and the “what if’s”? How do I as a Hospice nurse even begin to offer my support and service?

The hospital team of specialists and pediatric doctors had told the family numerous times that there was nothing further that could be done. Yet, they wanted more treatments, different medications and more specialists. That is when Lexi’s doctor’s referred the family to hospice care in an attempt to keep Lexi comfortable until she passed. The parents were not ready.

During the first visit, our Hospice team explored the goals and wishes of her mom and dad regarding the care of their daughter. “What do you want for Lexi”, we asked. “A miracle” said mom. “I know all the experts say that she is already gone and one violent seizure will be her last. We want a miracle none the less.”

Lexi had three seizures during our initial visit. As her little body jerked and writhed my heart ached. Every twitch made my breath stop.

Each visit was a struggle as we tried to negotiate medication adjustments to decrease the severity and hopefully frequency of the seizures. We tried short periods of time away from the ventilator so mom, dad and brother could hold Lexi without all the tubes. Marginal results were achieved. Lexi continued with violent seizures, mom and dad still wanted aggressive treatments and Lexi’s brother continued to be silent in the background. Every visit left me drained and strained.

After a few weeks of daily visits, Lexi was no longer able to tolerate the tube feeds. She was throwing up and aspirating. She was having more respiratory issues and spiking fevers that brought on more seizures.

“Tell me about Lexi-before the accident,” I asked one day. “Oh, she was a handful” spoke her father. “She was always running around getting into one thing or another. She never wanted to be held down even to stop and eat.” Never wanted to be held down I thought. Then it came out of my mouth before I had time to think, “How do you think Lexi feels now about being tied down with all the tubes and unable to move?” Silence.

Nothing more was accomplished during that visit. I left feeling that I completely over stepped my bounds, made a horrible situation even worse and now the parents would probably call the office and ask that I never return.

Lexi’s heart stopped later that night. She was no longer tied down and was free.

My forward and intrusive comments continued to haunt me for weeks. The family met with our Bereavement counselors for months after Lexi’s passing. Reports back were that mom and dad were beginning to “move forward” while dealing with their grief. Lexi’s brother was dealing with his guilt. I was pleased to hear of their progress but still I questioned if I had caused more harm than good during Lexi’s final day?

Months later I received a card in my mailbox at work. It was from Lexi’s mother. My heart skipped a few beats as I sat down to read the brief note. It started off by thanking me for my time and care for Lexi and went on to give some other updates on the family.

It ended with these words, “Lexi was set free a few hours after you left. Our family gathered around her and we told her she didn’t have to stay any longer. She was free to go and play.”

Her mother painted such a beautiful picture of the event that I could feel Lexi’s spirit fleeing as I read the story. Happy and free. I cried.

I am still cautious today as I talk with families about their dying loved ones. Is it my own frustration or inspired thinking that I want to verbalize? I think of Lexi during those times with the hope she will give me some gentle nudge of inspiration so I can help others in setting their loved ones free.