How Ventilator-Dependent Jessica Kennedy Speaks
Can you imagine always having to wait a few minutes before you can speak? Learn about how people who are ventilator-dependent like Jessica Kennedy struggle to speak.
Many people can’t speak or speak clearly due to a stroke, a debilitating illness, birth defect, T B I (traumatic brain injury) or S C I (spinal cord injury). The ability to speak isn’t effortless for them but takes concentration and focus. For Jessica Kennedy to speak she must constantly think about and adjust the number of syllables she says with the amount of air supplied by her ventilator or risk running out of air in the middle of a word. To speak to an audience for an hour or more isn’t easy. It takes a lot of energy and concentration. “It’s a good thing I enjoy the challenge of speaking professionally. Since I became a ventilator – dependent quadriplegic life has provided endless challenges. Speaking is just one.
At Age 26, She Had to Learn to Speak Again
Because of the brain stem stroke and herniation Jessica couldn’t breathe on her own and thus she was ventilator-dependent. To explain it in simple terms, the stroke hit her breathing center and she no longer breathed involuntarily. In addition, due to her inflated cuff on her tracheostomy tube she was unable to speak audibly. At first, she only mouthed words. Since the stroke affected her control of the mouth muscles it was difficult to read her lips. It was like reading the lips of someone with a mouth full of marbles.
A speech therapist helped her strengthen her mouth muscles during the 6 months she was in the rehabilitation hospital. Jessica detested the simple exercises prescribed by the speech therapist, but did them diligently. A huge part of rehabilitation and recovery is dependent on a positive mental attitude and willingness to do the prescribed exercises regardless of how stupid you look or feel as you do them. Her dislike seldom affected her willingness to run through them several times a day. When tempted to forego the exercises, she was surrounded by family that encouraged her and insisted. They gave her no choice.
Rehabilitation and Recovery
She left the hospital and worked with a home health respiratory therapist, who discovered Jessica had minimal diaphragm movement. To begin with, Jessica was only able to contract her diaphragm twice a day and often the muscle became fatigued and the following day might not be able to move at all. At those times she grew discouraged and felt like giving up, but her family fought to keep her motivated and refused to allow her to quit. A strong support system was key to her recovery.
Daily they worked to strengthen the muscle. Initially she attempted to move her diaphragm without any added weight and it was hardly perceptible, but over time it strengthened, and weight was added. A Kleenex box, books and a dozen different items of various weights from around the house were placed on her stomach and she contracted her diaphragm against the resistant weights. When she could consistently move her diaphragm, she began to work with pressure support ventilation to speak, but it took time and a lot of practice to coordinate breathing and speaking.
How to Speak: The Specifics
On PSV (pressure support ventilation) the ventilator’s BPM (breaths per minute or breath rate) is changed from eight to zero. If Jessica forgets to contract her diaphragm to trigger the ventilator to give her a breath her ventilator will not supply any air. Consequently, she’ll pass out and her caregivers must ventilate her manually. While she speaks someone must monitor her closely. Due to that fact, Jessica can’t relax while her ventilator is on PSV and her cuff is lowered, she spends most of the time with her ventilator on it’s normal settings and her cuff inflated.
The Bivona tracheostomy tube’s cuff must be lowered for Jessica to speak aloud. Otherwise air doesn’t pass over her vocal chords However, with the lowered cuff the air will simply pour out of her mouth unless she controls the air flow and closes her epiglottis. This forces the air into her lungs. “When my cuff and ventilator are adjusted for me to speak I have to remember to stop talking and allow air to go into my lungs. My family and caregivers must remind me to stop speaking and let air go into my lungs because if I forget, I turn blue and pass out. For the most part, they have noticed in time and reminded me to stop talking and breathe.”
At all times, when her equipment is adjusted for speech, she must guard against distractions and forgetting to just breathe. Dizziness or an alarm are warnings that tell her she needs air. There have been instances she concentrated on something and just forgot to breathe. It may be difficult to imagine, but just think about what you do when straining to do something. Do you hold your breath? She tends to do that. So, when she speaks she must be hyper aware of how often she has taken a breath, paused her speech to allow air to travel to her lungs and oxygenate her body and appear to speak without showing how hard her brain is working otherwise, to watch her speak wouldn’t be enjoyable, but distressing, for each speech she performs, she spends hours of preparation with these factors and more in mind.
Something as simple as the ability to speak can no longer be taken for granted . Jessica never anticipated, at the age of 26, she would have a stroke, become a quadriplegic nor dependent on life support for the rest of her time on earth. For a little under a year after her stroke, she couldn’t talk aloud and only mouthed words. (The doctors had believed Jessica had Locked in Syndrome. A person with that condition can’t move anything but their eyes nor speak.) “I prayed God would heal me. For a long time, I didn’t think he had answered my prayer, but He answered in His time. He healed my spirit, left arm, hand, head, and ability to speak, and not my paralysis, but eternity walking, dancing and singing in heaven is worth the time I spend disabled on earth. Who knows by sharing my story and Christ’s gift of salvation someone else might open their hearts to Christ.”