We have experienced the full gamut of vent life from infancy to adulthood; each phase with its own challenges. Infancy was less stable, but recovery was quicker. Therapy was easier. As he has aged, he became more medically stable, but more physically demanding for us (transfers, therapy, etc.).

Over the years, we have adapted our home to meet his needs. Many things we had to design ourselves - therapy equipment, shower chair, pool lift, etc. Ryan has his own living quarters with room-covering ceiling lifts. He has a private bath and therapy room. He uses a Dynavox with switch to communicate and control his music and TV. Ryan uses a custom wheelchair, stander, therapy tables, Astral 105 ventilator (he is on pressure support), Fisher Paykel humidifier, Cough Assist, Vest, pulse oximeter and CO2 monitor. He loves music and has nearly 4,000 songs in his library. He can access his computer with Jaeco Arm supports and a NueroNode (an EMG switch we have on his thigh). For transportation, we use a full-size conversion van with wheelchair lift.

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Ryan has received excellent care his entire life and has only been hospitalized a single night. He is not on any medications. His father (a retired ER physician) and I are his primary caregivers. This includes trach and G-tube changes, bathing, bowel management, getting him up in the morning and putting him to bed at night. We have night nurses working from 11:00 pm - 8:00 am (so we can sleep) and 6 hours of day nursing Monday through Friday. He receives physical therapy four times per week. Though Ryan is on Medicare, our nursing and physical therapy are self-paid.

By far, the most challenging part of our lives is staffing. Finding caring, competent nurses who are willing to work nights is nearly impossible. We run our own ads, do our own training (which is extensive), and pay very well. Yet, we still have great difficulty finding people. Once we do find someone, though, they tend to stay with us for many years. We have our staff go through an agency for payroll and insurance.

COVID has been extremely difficult; especially keeping COVID out of our home. We have been very isolated, avoiding crowds and indoor spaces, and not seeing family (they all live out-of-state). Ryan’s caregivers wear N-95 masks and gloves that we provide. We have had numerous uncovered shifts due to illness. It has been exhausting, but we have been successful in keeping COVID out of our home and Ryan safe. Early in the pandemic, we stocked up on masks, gloves and medical supplies.

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The quality and availability of supplies have declined over the years, specifically ventilator circuits. Ryan does not tolerate HMEs well and needs active humidification. For most of his life, we have used custom 8’ heated wire circuits. The longer circuits allow him to float in the pool, use the stander, and do transfers without disconnecting his circuit (disconnecting during a transfer causes him to aspirate). At the beginning of the COVID pandemic, Vyaire decided to discontinue all custom circuits without warning, including Ryan’s custom 8’ circuits. The longest heated wire circuits now available are 5-6’. This has been a huge step back for his quality of life. While ventilators have seen great technological advances over the past 27 years, humidification has gone backwards. It is frustrating. We are constantly on the lookout for alternatives.

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Ryan is an amazingly happy and content young man. He has a wicked sense of humor and is seldom without a smile. He has no self-pity and is exceptionally patient. He loves music and has it playing 24/7 – even when he’s sleeping. He enjoys using his computer to surf the internet and stream his favorite content.

We have an active life; swimming (using a pool lift and floats), boating (we have modified our boat to make it accessible), and biking (VeloPlus bike in which the wheelchair rolls onto a platform in front of the bike). Though on hold because of COVID, we used to attend numerous plays and concerts each year. Ryan loves all types of live performances and has been to over 100 shows. We also take an annual trip to Disney. We enjoy doing everything together as a family and are grateful for every minute we spend together. Our focus is to keep him healthy and give him the best quality of life possible.

Our life is not a “normal” life, but it is normal to us. Our journey as a family has been both extremely challenging and extremely rewarding. Ryan has brought joy and love into our lives and taught us to be brave, patient and grateful for each day we have together.