Finding our new groove

Readers of this blog may have noticed that José hasn’t been as present here this year as in past years. A combination of his ALS progression and a series of infections have made it harder for him to communicate. I’ve been reluctant to step in but decided that we’re overdue to share a meaningful update.

So much has happened in the past few months that it’s hard to know where to start, so I’ll begin with the a quick update on José’s health.

Lab work early last week confirmed that he was battling another severe UTI and likely a secondary infection, possibly pneumonia. Based on his condition, he officially met the criteria for systemic inflammatory response syndrome. When the source is an infection as in Jose’s case, it’s called sepsis. Generally, this would mean hospitalization.

José declined, just as he did when the same thing happened in May of this year.

Getting to the hospital would require an ambulance transfer and given his advanced health directives there’s not a lot more they can do for him there than at home. Furthermore, he’s less comfortable and has trouble sleeping in the hospital. Our biggest shared concern, however, is that he would never come home–which is not what he wants.

Thursday night he gave me quite a scare after calling for my help. I found him unresponsive with his eyes wide open, pale, cold, and barely breathing. He had passed out and came to a few minutes later but in the moment I hadn’t realized that was what had happened. It was terrifyingly grim.

Friday he started coughing around 1:30 p.m. and it continued until sometime after 8:00 p.m. We started a third antibiotic that night which he projectile upchucked (in his words, a la The Exorcist) less than 30-minutes after it was administered via his feeding tube.

Fortunately his coughing subsided enough for him to sleep through the night – only waking me a couple of times. His urine output was still limited despite good hydration which was another worrying sign (kidney function), and his heart continued to race like he was in the middle of one of his old OTF workouts.

Needless to say, we spent the weekend finalizing the few remaining gaps in our plan for his transition (thank you to everyone who shared their experiences when I asked for help on Facebook last week).

As of today? No pneumonia, third antibiotic has kicked in, coughing has subsided, and he’s doing a bit overall. New blood work this morning confirms an improvement as well.

I share all of this to give you a glimpse of what we’ve been going through behind the scenes. When folks ask how José is doing, it literally depends when you ask. Week to week, day to day, and sometimes even hour to hour he can go from cracking jokes to being too weak to do anything but sleep (when he’s not struggling to clear the crud that builds up).

Fortunately, as we’ve shared many times before, he has an outstanding team of medical professionals–as well as all of you–standing by to help when needed. It truly takes a village. Thanks for being part of ours.

José asked for his eye gaze device to be set-up today for the first time in weeks, so I’m hopeful he may return to writing for the blog soon. Whether that happens or not, I plan to start sharing weekly updates— a bit of our everyday living with ALS, both the beautiful and the terrible—and we hope to hear from you, too.