Miles vs. Life

Everything can change in a moment.

My best friends, Kandace and Jessica, were in town visiting. We had been at the pool and came home to hang out with my sons. As we arrived, we immediately went to Miles and picked him up to take pictures with him. Miles was all smiles.

Pictures with Miles just moments before the incident.

Pictures with Miles just moments before the incident.

While taking photos, Bryce asked me to help him change the car’s oil in the garage. As I walked out, I heard Miles’s pulse oximeter alarming. Miles alarms so frequently that I didn’t think much of it. There was a nurse by his side so I assumed she knew how to handle it. That moment is frozen in time for me. I wish I had walked in sooner.

After hearing the alarm continue for awhile, I walked in the living room to see my friends standing horrified and the nursing bagging Miles. I walked up to see him blue and lifeless. His oxygen levels were at 3% and heart rate was dropping. I remember yelling for someone to call 911 and I ran to the kitchen and dialed myself. My hands were shaking but I knew I was moving quickly. The operator asked several questions. Was he breathing? Where do we live? How old is my son? Is someone performing CPR? I screamed for Bryce to come in and get an oxygen tank and his face changed as he ran in the house. He knew what was happening.

I was transferred to another operator to repeat the questions. I started crying into the phone. “She isn’t bringing him back! Pease hurry!” His sats were at zero now. The nurse kept saying the same thing, “Come on Miles! Come on baby!” She was shaking his unresponsive body. She asked my friends to flick his feet but they were paralyzed at what was unfolding.

I threw the phone to Jessica and took the ambu bag away from the nurse. I squeezed it and felt no resistance. I began chest compressions. I heard Bryce yell, “Check is trach!” That’s when I look down to see his trach dangling around his chest like a necklace. The nurse had been bagging him for about 3 minutes without an airway. She never checked. For a moment, I thought it was too late. I moved into action.

“His trach is out!” I screamed. I grabbed another trach, opened the package, pieced it together and put it in Miles’s neck. My baby’s lips were purple. His eyes were in the back of his head. Life was gone.

My husband was struggling to get the oxygen tank going. He asked for help and his voice was shaking and cracking. I began bagging Miles while I held his trach in place with my other hand. I stopped every so often to do chest compressions. Nothing. I tried again. “Please come back Miles!” I begged him. Nothing.

The visual of my tiny baby. Purple now. Beyond struggling. Given in to defeat. It is burned in my brain forever.

I thought I heard sobs behind my but I never turned from him.

I slowly saw color enter his face. First blue, then white, then pink. I heard the nurse say, “He is coming back up.” I just continued working on him. He began having a seizure or temors from lack of oxygen. His hands were shaking and he stared blankly.

EMS arrived and flooded into the room. At least a dozen of them. They started assessing Miles.

I asked the nurse to put his old trach ties on. She could not do it. I asked an EMT to hold the trach so I could put the ties on. I got them on quickly but as reality was setting in, I saw how much my hands were shaking. As soon as they were on, I saw how loose the nurse had put his trach ties on and I knew that’s why this whole scenario happened.

Miles had color now but still no life to him. His eyes stared blankly. Was he gone too long? How long had it been? I knew he had been without oxygen for almost five minutes. He must have brain damage, I thought.

Bryce came to our side and said in in the sweetest voice, “Hey Miles. Hey Buddy.” Miles turned and looked at him. His eyes had life!

I heard Weston crying. He woke up to the chaos and probably felt terrified. Jessica brought him in our bedroom to calm down.

I felt a pat on my back from the EMT. “You saved him mom.” Another EMT stood in front of me. “Yes you saved him.” She said. I finally let go of the ambu bag and got up. I saw for the first time how many people were in the room. I walked straight to Bryce and cried in his arms.

The paramedics assessed Miles but we all decided not to send him to the ER. He clearly wanted to go to sleep and he ended up sleeping a lot the next 24 hours. Two police officers asked me questions and eventually everyone was gone.

The event has replayed over and over in my head thousands of times. Of course, when I reported it to the nursing company, our nurse blamed us for the event. She said we were poking Miles’s shunt. It is clear she is making excuses because she made a mistake about the trach ties but I don’t blame her. People panic in these scenarios.

I did ask her later why she had the ties on so loose and she said she knew they were too loose but she hadn’t gotten around to tightening them. She said she had a, “fat finger, small baby neck scenario” so she had trouble getting them on.

I am in the process of fighting the state of Arizona about Miles’s nursing hours. They want to cut him from our 112 hours a week, to 54 hours a week. This is the minimum a ventilated child can be given. They want Miles to have minimal care. It’s heartbreaking but I’m not a mom that is afraid to fight the good fight. It’s my full time job right now. Lefebvres VS. The State. Bring it on.