I was asked to give a ten minute slideshow presentation to a panel of medical professionals at a local children's hospital about the family perspective on life with a tracheostomy. I felt that my perspective was very limited since Ben only had his trach for three years and we had a good outcome. So, I asked friends of mine that have been or are still entrenched in trach life to add their two cents. I'm sharing my talk here, but have removed the contributions of my friends since I haven't asked their permission to share here.
16 years ago our first child, Ben was born. My husband and I both worked low income full time jobs and had no family in town. When seemingly healthy newborn Ben was a day old he inexplicably arrested in my arms on the maternity floor. He was in pulseless cardiac arrest for likely 30 minutes. He continued to code and desaturate for four weeks without known cause. His neonatology team advised he be given a trach and g-tube for stability and we agreed. A mere twelve days after being trached Ben was discharged to home. His nursing agency was told he wasn’t expected to survive. Ben had other plans. We would much later learn he had a neuromuscular disease likely in the realm of congenital myasthenic syndrome, though his definitive diagnosis and prognosis remain unclear.
Ben qualified for 90 hours of nursing per week though filling the shifts was a significant challenge. I recall one morning an LPN we’d never met was sent as a sub. She peeked at Ben gasped and said, “Oh my God! What’s that thing in his neck?” I did not go to work that day, or many other days for similar reasons. It was rare to be sent a qualified care giver and we frequently weighed leaving Ben with subpar nursing vs losing our jobs.
First steps provided OT/PT/ST/DT nutritional, and social services. Ben could generally be on room air while awake and Bi-pap when asleep. He continued to desaturate but having the trach made it easier to rescue him.
Ben had countless respiratory illnesses and hospitalizations. He suffered heart and renal failure. Happily, in time, his lung function improved, his desaturations ebbed, and the heart and kidneys returned to normal. Ben was decannulated at age three.
Though Ben’s entire life has been marked with struggle by disability and chronic medical turmoil, The trached years were our most stressful and isolating.
In addition to the demand of 24/7 care, lack of sleep, and frequent traumatic emergencies; juggling medical supplies, equipment failures, pharmacies, insurance companies, billing, nursing agencies, therapy homework, medications, and doctor’s appointments was a full time frustrating job.
We relied on each other, our revolving door of caregivers, our friends, our many specialists, our Catholic faith, and the on-line support group I had found in Aaron’s Tracheostomy message board.
The trach board brought together mothers of medically complex children from all over the world. We could help troubleshoot and “vent” to others who understood our unique challenges and victories. I have remained in touch with many of these amazing women. We now call ourselves “The Real Housewives of the PICU.” I asked them to lend their voices to this opportunity and asked what they would like doctors to honestly know about the day to day trach life. Each of these mothers are grateful for the technology that allowed their children to live and thrive beyond what would have been possible in the past. An alternative airway allowed each of us to know and love our children longer. The trach is a life saving but also life changing device that comes with many unintended consequences. It has been our shared experience that many medical professionals are not fully aware of the challenges of the trach life at home.
(Sharing of other perspectives/photos happened here)
Though I touched on the stressors that come with the trach life, I would be remiss not to stress the biggest joy, the continued relationship we’ve been blessed to have with our son, Ben. My Catholic faith likely instilled this value in me, but Ben affirms that it is in our struggle that we can be molded into people of extraordinary character.
My son still lives with chronic medical issues and disabilities, but thanks to the decision to trach, he was gifted with extra time that he is using to grow in wisdom and in service for others. He has a strong sense of perseverance, and empathy, always rolling with the punches.
Ben is invited annually to his old elementary school to give witness through his life’s story and to assist with abilities day.
He drives. He wants to go to college to be a writer or a computer programmer.
For one last parent perspective,
I turned to my husband, Jason. He said, All the problems associated with the trach life are not due to the trach itself, but rather the physical dysfunction of the child, that creates the necessity of treatment. Whether the existing co-morbidities warrant the removal or withholding of life saving treatment is a different conversation than whether or not to trach. No one can perfectly predict the nature of life with a trach.
Ben has been grossly misdiagnosed many times. One physician recommended we take muscle biopsies of his six month old heart because he would certainly die soon anyway, and we could use the results to determine the ethics of having future children. Thank God, we did not listen to him.
Explore alternatives to mantaining airways without a trach, but the ability to breathe independently shouldn’t be a life limiting determining factor. When trachs are required parents and back up caregivers need training and support. Encourage families to engage hospital and community resources. When lacking, they should be created. It is vital for patients to be followed medically and supported for as long as the trach is in place.
I’ll close with this story: I mentioned our nursing agency had difficulty staffing Ben’s case. A dear friend offered to fill in nights that had no nursing. First he’d watch the monitors and wake us if an alarm sounded.
Soon, he learned to address the alarms and progressed to feeds and medication dosing. He and his wife eventually became fully vetted and our most trusted respite care givers for Ben. This experience helped lead my friend,
to go back to school and become a neonatologist for this hospital. His time with Ben all those years ago still influences his care for the tiny babies he encounters every day. One trach did that. What I’ve learned by mothering Ben is to give life a chance, we can’t know how it will turn out. When you come to a cross road, do the next right thing.
Thank you for inviting me to share my limited perspective on this topic today and giving a voice to my friends who have also walked this path.
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