In 2005 and 2007, Holly and I adopted two medically fragile infants. We met our son Aidan when he was 10 months old, living at a nursing home in Ohio, where Holly was his therapist. Born at 32 weeks with a stage 3 intraventricular hemorrhage and multiple congenital defects, Aidan spent his first months hospitalized, where Childrens Services took custody of him for reasons of neglect and abuse. We were lucky enough to become his foster and adoptive parents.
Aidan has extensive medical issues. His congental defects include severe scoliosis, cardiac anomolies, a tracheo-esophogeal fistula and atresia, kidney stones, anatomical malformations, and a skin condition called ichthyosis. Aidan is trach/ventilator dependent due to significant tracheobronchial malacia and bronchiectasis, is tube-fed, deaf, and developmentally delayed. He’s had multiple surgeries, including fistula and atresia repair, ASD/VSD repair, nissen fundoplication, apendectomy, cochlear implant, and medical port placements. Despite all of this, he is an amazing 13 year old that brings so much joy to so many people.
We also adopted our daughter Halle, who’s about to turn 12. She too was born at 32 weeks with significant respiratory issues, including a predisposition to repeatedly code (including in PICU and Walmart!). She also was trach/vent dependent until 5 years of age, and still requires significant respiratory support for bronchiectasis, apnea, and asthma. She is tube-fed due to neurological problems affecting her ability to swallow. Along with medical problems, Halle also has learning disabilities, ADHD, and an anxiety disorder that requires patience, therapy, and a lot of intervention. But she is a sweet girl and we love her dearly!
Since moving to Salt Lake in 2011, the kids’ needs and level of care (Aidan in particular) have increased dramatically. The past 6 years have been full of extended stays in PICU and long recoveries afterwards. The constant medical demand ultimately forced me to withdraw from my PhD program, forego employment, declare bankruptcy, and live off of adoption subsidies to assist with their care full-time.
Both kids see multiple specialists and therapists, and transporting Aidan requires two people. The nature of their disabilities make illnesses frequent and potentially catastrophic. For example, almost two years ago, Aidan contracted corona virus and a haemophilus infection in his blood from a routine bronchoscopy. The combination created the perfect storm, attacking his heart and lungs. Within a twenty-four hour period, he went into heart failure along with a collapsed lung and required emergency placement on ECMO (heart/lung machine) for nine days.
We nearly lost him, but Aidan made a miraculous recovery, as he often does, to everyone’s amazement. But his recovery had significant complications. About two weeks after coming off ECMO, the bovine patch used to repair his femoral artery failed, and he developed a pseudo-aneurism that burst. Luckily, we had brought him into the hospital the night before, but the rupture sent him into hemorrhagic shock. Primary Children’s brought in vascular surgeons from the University of Utah Hospital to perform emergency surgery to reconstruct the artery with a cadaver graft. Due to MRSA in the wound, they left his wound open to heal from the inside out with a wound-vac. The hospital stay lasted 40 days, during which Holly and I took turns attending to Aidan at the hospital, while the other helped Halle at home.
After discharge, we returned to the hospital twice a week for sedated dressing changes, and those bi-weekly trips lasted for two months. Rehabilitation required PT, OT, and home-schooling. It was a crisis for the whole family that took 6 months to get back to baseline.
We survived! But the extensive wear and tear on Aidan’s body has diminished his mobility. Aidan requires the use of a power wheelchair outside of the home. We have a 2008 Toyota Sienna, but its age and milage (110,000) disqualify it for conversion. I’ve been using an ATV ramp to push the wheelchair into the back of our van, but at 400+ lbs, the wheelchair’s incredibly difficult to get into the van. With all of the medical equipment connected to the back of his chair, it barely fits and causes considerable wear and tear. As Aidan grows, our van won’t accommodate the length of his chair. With a wheelchair van, however, my wife could easily load him into the van with just a nurse, which also subsequently gets me one step closer to be able to provide for my family again.