This year has started out with some difficulty. Regular readers will know that my adult son Justin was born with Duchenne's muscular dystrophy. We knew the time would eventually come, but we were still not prepared for the last stage of this terminal neuromuscular disease. Justin, who is 23 years old, stopped breathing at his apartment due to respiratory failure secondary to pneumonia and Covid. His caregiver immediately called 911, and Justin was resuscitated in the ambulance on the way to the hospital. Once at ER, Justin was intubated and began breathing attached to a ventilator. After a few days, he was extubated. After just a few hours, his breathing crashed again, and he was re-intubated.
At that point, the doctors decided to let him try to gain his strength back for a total of two weeks on the vent for one more try to breathe on his own before going ahead with a tracheotomy which would attach to the vent on a permanent basis. In fact, Justin did regain some strength and was successfully extubated for awhile. He was able to eat a little food, talk with us, text non-stop during some playoff football, and seemed to be getting back to where he was pre-hospitalization. They moved Justin from ICU to intermediate care and eventually to general care.
During that period, Justin began experiencing severe back pain and needed heavy doses of pain medication. And then things took a turn for the worse with his blood pressure crashing and then his respiration crashing. Yesterday, he was back in ICU. Early this morning, we were informed that he had several overnight respiratory events and was going to be intubated again.
Justin has been in the hospital for going on four weeks, and it's been a tough ride. Although all of his muscles have atrophied progressively over his entire lifetime, Justin has a strong disposition and continues to fight. This disease is relentless, and no one emerges victorious. We will go to the hospital again later this morning, but it seems inevitable that a tracheotomy and permanent attachment to a vent is going to be inevitable, if he survives this time. The vent will provide stable respiration, but it's something that Justin wanted to avoid if at all possible. Two of his remaining joys are eating and talking, and these activities will change. We don't know yet how much.
Our winter travel plans have obviously been canceled. Family comes first.
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