A non-ALS scare

Just before sunrise on Friday, Dec. 15, I found myself calling for an ambulance.

José had come home early from work that Wednesday–missing his on-air shift for the final day of HPR’s end of year membership campaign–with severe abdominal pain that turned into a sleepless night of pain, nausea, and more unpleasantness that quieted down most of the day Thursday, and erupted again by late afternoon. By 3:00 a.m. Friday morning things were looking pretty grim and despite his protestations, I made the choice to dial 911.

When the paramedics arrived, we used the ceiling lift to transfer him to their gurney, and I was able to accompany José in the ambulance to Queen’s Medical Center. The team at Queen’s emergency room determined that his diverticulosis had progressed to diverticulitis, and ultimately gastrointestinal perforation and sepsis. By 3:00 p.m. he was being prepared for surgery.

While this medical emergency was unrelated to his ALS, his current condition due to ALS created additional complications–namely due to the fact that surgery would necessitate intubation (insertion of a breathing tube). At this stage of his ALS progression, extubation (removal from mechanical ventilation) is considered high-risk. If he could not breath on his own after extubation, the options were: re-intubate, tracheostomy (which he has chosen against), or be placed on non-invasive ventilation for comfort.

Fortunately, the surgical team–with a special shout out to the incredible CRNA–was mindful to do everything they could to increase his odds of being successfully extubated post-surgery. This included their approach to anesthesia and recovery in the surgical ICU where the breathing tube was successfully removed the next day.

There was one particular exchange with a specialist that I will refrain from sharing, but was deeply troubling and the sole sour experience of what was an incredibly stressful ten days that could have ended very differently. Both José and I were comforted by the thoughtful and attentive care he received at Queen’s, from the ER to the operating room, surgical ICU, hospital rooms, and even now (post-discharge) through its transitional case management program.

José’s medical team has been exceedingly pleased with his recovery thus far. One of the main reasons he remained hospitalized until Dec. 24 was because they weren’t able to get him in for a swallow test to verify whether it is safe for him to resume eating by mouth.

Fortunately, since he already has a feeding tube that was placed late in 2022, they started him on formula which he planned to transition to in January as his primary form of nutrition; we simply accelerated that timeline. Once it was clear that he was tolerating the formula and his gastrointestinal system was functioning properly (via his new colostomy), he was cleared to return home.

When we’re able to get him back to Queen’s for his swallow test, he’ll likely be cleared to resume eating some food by mouth for comfort or pleasure but will continue to rely on the feeding tube.

With his discharge on Christmas Eve, we were able to spend a very quiet and restful holiday at home with our new rescue pup, Coco!

You can bet that José will be sharing much more here on the blog soon. Until then, thanks as always for your unwavering support in his journey living with ALS!