In October 2022, Lonnie was 16 years old and completely healthy. He had two impacted wisdom teeth so he had a routine surgery to have them removed. Within weeks he was taken to the ER declared septic while coughing up blood. Within 48 hours he was placed on a ventilator and moved into the ICU. It wasn't until a week later when he still wasn't improving they discovered he had a rare autoimmune disease impacting his blood vessels: ANCA+ vasculitis as his lungs were filling up with blood. It is one in a million that someone his age would have this autoimmune disease but we were thankful to have caught it as he was immediately started on the appropriate treatment. Three weeks after being in the hospital he was discharged, and we thought recovery was the only thing we'd have to tackle.
It was soon discovered that his lungs weren't the only organ impacted. In January 2023, Lonnie underwent a kidney biopsy. The vasculitis flare up had caused damage to his lungs, spleen, kidneys, liver, and pancreas. All organs healed with time but the damage done to his lungs was just too much.
A week after his discharge from the kidney biopsy, he started to go into respiratory distress until finally he had to be admitted to the hospital in February 2023 for a lung biopsy to discover why his lungs weren't getting better.
The lung biopsy was extremely risky and landed him back on a ventilator in the ICU. It did give answers but not ones we wanted to hear: inflammation and scar tissue. They started him on a stronger immunotherapy medication but it was made clear to us that Lonnie wouldn't be able to keep his current lungs which were at 13% function. He is now on a BiPap ventilator machine continuously needing 6-10 liters of oxygen. He is inpatient at the University of Colorado now following his lung transplant which had some complications.
It is a 3 hour round trip daily to Denver in addition to food and income loss as I've let one of my main sources of income go in order to care for Lonnie. We also have 4 autistic kids at home who we are trying to balance everything for. I've worked very hard to just "make it work" without accepting outside help but Lonnie needing a transplant means this journey won't be over for awhile. The transplant will be a hard surgery with an even harder and longer recovery.
ALL medical expenses have been covered for Lonnie through insurance. I will only use the money if I absolutely have to to balance our family's needs. Any money left over will be used for a family trip of Lonnie's choice and/or any way he would like to use the money.