As far as we knew, Joshua was a healthy, active child up until he was 8 and a half, when he suddenly had a respiratory failure, ended up in the hospital and on a ventilator. It took months for doctors to diagnose his extremely rare condition
now known as ROHHAD which stands for Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation. He was the 23rd person in the world known with this condition. It meant, for some unknown reason, his brain stopped getting messages telling him he needed to breathe or produce hormones, regulate his body temperature or hydration – all things most of us do without giving them a single thought. There is no known cure.
So, 3 days before he turned 9, Joshua got a tracheostomy, and he came home from the hospital a few weeks later with a home ventilator and other medical equipment and supplies. We didn’t know how to get Medicaid for him and had no money to pay for nursing so I got quite an education taking care of him and researching his disorder. Oh, and Joshua was also featured in a Discovery Channel Documentary when he was 10 years old.
Joshua has since been approved for a Medicaid Waiver program, had nurses help take care of him. He had surgery to implant a breathing pacemaker when he was 12. He uses his pacers to breathe while he is awake – as long as he is not too sick. He also got swine flu and double pneumonia when he was 13. He came home after that using an IPV machine to help him clear secretions. It has worked well for the last 8 years.
He is now 21 years old, graduated high school and even has a part-time job.
I went back to school and became a Registered Respiratory Therapist and worked for a while at University Hospital in San Antonio before learning of Apple Homecare Medical Supply, where I now work and get to be my son’s RT. I am so glad we have such a great DME company providing for Joshua’s needs.
Thank you Vanessa for sharing your Joshua’s story.
Mom-Vanessa is a Registered Respiratory Therapist with Apple Homecare Medical Supply, Inc 866-332-7753 / www.applehms.com