How Did We End Up Here?

IMG_3721(2)The words hit me like a well placed punch in the stomach. I had to catch my breath before I could go on.

“We will also discuss various end of life issues such as tracheostomy and mechanical ventilation.”

My head was spinning. I kept hearing the words over and over.

“End of life issues. End of life issues.”

We saw Kevin’s pulmonologist just weeks before for a little snoring. It was no big deal, really. Now, I was reading the letter that he sent to the pediatrician. How was the pulmonologist supposed to know that I was a nurse and I would be the one at the pediatrician’s office to open the letter?

“Tracheostomy and mechanical ventilation.”

He couldn’t possibly have meant my Kevin. He was fine! I was a nurse, after all. I knew he was fine.

I quickly showed the letter to Kevin’s pediatrician. She read the letter and I knew immediately what she was thinking. She didn’t even have to speak. I couldn’t think straight. How could this be happening?

“What if I just watch him closely?”  I knew I could do that. I was pleading with my own thoughts.

As the days passed, we settled back into our comfort zone.

Within a week, Kevin began having short episodes of apnea. We were extra vigilant though, and we had oxygen as needed and we monitored Kevin’s pulse ox continuously.

It came on as suddenly and unexpectedly as a loud clap of thunder on a sunny day. Kevin was awake and alert. He breathed out. I waited.

And I waited.

And waited.

No breath in.

I shook him. I yelled. I shook again. Kevin’s color went from rosy to purple to dark purple right in front of my eyes. I started mouth to mouth. Nothing was helping.

My older daughter was home, so I screamed, “Call 911, Kevin’s not breathing!”

I was helpless as Kevin’s pulse ox plummeted down through the 40s and into the 30s. It felt like an eternity waiting for the ambulance. Then there was a knock at the door. It was a respiratory therapist from our home care company. We had no appointment with him. He was coming to check on the oxygen equipment that was recently delivered for Kevin.

“You’re a respiratory therapist?” I screamed. “My son is not breathing!”

Together, we both tried to get air into Kevin’s lungs.  Nothing helped. Kevin’s color was darkening and he was completely unresponsive. His pulse ox was 24. It continued downward until the paramedics arrived.

Completely drained of everything I had and emotionally broken, I handed my son over to the ambulance crew.

Kevin’s color was dark blue. His pulse ox was 9. He was lifeless as he was placed into the ambulance.

By the time we arrived at the hospital, Kevin began to breathe again. His color and his smiley demeanor returned as quickly as it left.

Over the next few days, while in the hospital, these episodes became more frequent. “Central apnea,” they said. After a failed trial of CPAP, our options were slim: Tracheostomy and mechanical ventilation or nothing. Less than three weeks since our pulmonary visit, my greatest fears had become reality. We were facing end of life issues with my sweet and full of life 11-year-old.

Kevin’s eyes said everything that he could not. We knew we had to choose the tracheostomy.  Even though Kevin was a true champ and the surgery and recovery were uneventful, we felt like we had let him down. How could we let this happen? Now, in addition to all the limitations Kevin had, he would be strapped to a ventilator that breathed for him for the rest of his life. I felt defeated and crushed. Kevin didn’t though! DKevinay after day, he continued smiling. Nothing got him down!

Before long, Kevin only required the ventilator at night. Our new normal was not as bad as I envisioned. That was 15 years ago and Kevin is still smiling! I have learned so much from this boy. And what was once my greatest fear, life connected to a piece of equipment, has become something I am so grateful for.

Imagine that.IMG_3921







4 thoughts on “How Did We End Up Here?

  1. I remember the horror of that time as if it was yesterday. Difficult decisions that no parents should have to make. But, you have such good instincts, Lori… Kevin and ME are so lucky to have you as their mom! xxx

  2. Your children’s’ smiles always brighten my day Lori and I thank God that Kevin and MaryEllen are here with us today to share that happiness. I truly hope to meet them in person some day so I can say thank you to them both for brightening up our days. And you two are such amazing parents to all of your children. Blessing on you all! <3

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