Once ALS progresses enough, Clinic days do not offer enough time with the neurologist or pulmonologist, so often patients have to pack up and head in to another appointment.
That means that in addition to the usual morning routine that could take two hours to get Mary up and settled into her power wheelchair for the day, we had to pack her feeding pump and charger, formula, urinal, baby wipes, depends, pain meds, bipap with charger and back up battery, and load her into a medical wheelchair transport van for the 1 to 1.5 hour drive into Portland. All the while, hoping that nothing went wrong with the bipap power.
We didn’t have enough time with the neurologist or pulmonologist at clinic in November 2014, so we had another appointment in December, 12 months after her initial diagnosis. The “to trach or not to trach” debate continued. I hated that conversation, I hated that we even had to have it, and keep having it, for months on end.
At that appointment, they told Mary that if she had a trach, it could be 4 to 6 weeks before she could go home IF she was able to go home at all. Apparently only about 30% of PALS that go the trach route are able to actually go home and not to some type of facility. Mary was already respirator dependent (and had been for at least 6 months). At this particular appointment, Mary said that she wanted to live long enough to have stem cell treatment. I was stunned speechless. So was the neurologist. Mary had never said that before. There had been ONE patient in Israel who had shown improvement after stem cell treatment, and the results had not been duplicated. My thoughts that day, after my initial shock at her reason were “How realistic is that? How long until it’s available in the US, and will she even be a candidate?”
The doctors were trying to encourage her to make a decision because they were worried that it might have to be done as an emergency rather than planned, that it might be done in a hospital that didn’t understand ALS instead of at the hospital next to the clinic. They offered to try to connect her with more patients with trachs, and with someone who took care of a person who wasn’t happy with it. Mary wanted as much information as she could get before making a decision.
Knowing what I knew then, if it had been me in that condition, I believed I would say no to a trach. Knowing what I know now, I absolutely would say no. I was terrified she would say yes. The doctors both told her that if anyone could make it, she could. They both implied they were surprised she was still alive, let alone still talking, a year after diagnosis and with her rapid progression. She was so positive about all of this, when all I wanted to do was hide somewhere and cry.
If she were to say yes, the biggest barrier to bringing her home afterwards would be finding 24/7 caregivers. We couldn’t keep caregivers as it was, and a trach and ventilator would definitely limit our options of qualified caregivers and agencies willing to provide them. There was no way I could do it all. I couldn’t quit my job to take care of her. I already wasn’t getting any sleep. She never did really understand all of that.
She emailed with a couple of local people with trachs. The people who aren’t happy with the decision to trach typically don’t want to talk to anyone or share their experiences, so she never did hear about the ones who weren’t happy. And she still didn’t make the decision, leaving her options open and me in a perpetual state of dread and fear.