My Experience on a Ventilator (Part 2)

For Part 1 of Leslie’s experience, read Just Breathe: My Experience on a Ventilator 

I experienced many frustrations and fears during my time on a ventilator. I’d like to offer four tips to health care professionals, family and friends of someone on a ventilator. These are based on my experience 

Never assume that your loved one cannot hear or understand you.  
  • Even in the very first days I could hear. I COULD HEAR EVERYTHING! When I was intubated, a tube was inserted in my mouth down my airway in order for the ventilator to breathe for me. I was heavily sedated. My eyes were closed. I did not respond in any outward way. I could not blink. I could not grasp your hand. Nothing. My appearance was dire. 
  • By all indications I looked as if I was not “present. But I was clearly aware of my surroundings. I heard the nurses. I heard the visitors. I HEARD IT ALL!  
  • Please, choose every word you speak wisely when you are in the room with a critically ill patient, even if all indications are that they are not cognizant. Let every word you speak in their presence be uplifting, encouraging and positive. In my experience, I was thirsty for words of HOPE.   
Look for possible subtle signs that your loved one is trying to communicate. 
  • My first communication came with a slight move of my index finger. My husband was the first to see this “sign. He then began to formulate Yes and No questions, allowing me to tap his hand with my index finger as a response. After the tracheotomy was placed after my initial few days of intubation via my mouth, I learned I could “click” with my tongue.  “Palate clicking” became my favorite form of communicating for three weeks. It involved putting the tip of my tongue on the palate of my mouth just behind the front teeth and then making a clicking noise. I could grab the attention of a nurse. I could click in sequence to answer questions. I became very skilled at this. It works with a tracheotomy because the sound is produced requiring no air to move over the larynx (vocal cords).   
Practice understanding and dignity. 
  • The most important thing to remember is that I wanted to be treated with understanding and respect. I believe that this would be universal for all vent-dependent patients.   
Adhere to Visitation Rules 
  • The medical team may have special instructions for their visitors, such as special visiting times or a time limit to the visit. Please follow these instructions. They are in place to allow the patient care team to give your loved one the care he or she needs. 

Although it was a long recovery, I am fully independent of a ventilator. I appreciate the care from my family, friends and medical staff during this time. It is their support that helped me through this difficult experience.   

I hope that these four tips will help you to support your loved one in their time of need.  


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