A week after the third time Mary almost died, early in November 2014, a Trilogy non-invasive ventilator was delivered as a replacement for the BiPap/AVAPS. The Respiratory Therapist spent over three hours making sure the settings were just right for her, and was very patient with Mary’s intense anxiety. In addition to the internal and external batteries in the Trilogy, Mary had requested and gotten insurance approval for a second external battery. It took some time for her to adjust to the differences between the Trilogy and the AVAPS; the biggest challenge she had was adjusting to talking with the increased power of the breath support and air volume (which she needed).
The first night she was on the Trilogy, I was up most the night adjusting and re-adjusting settings and alarms that kept going off every time she fell asleep.
People had always suggested contacting the electric company and requesting priority power restoration. I had contacted the electric company shortly after the second time Mary died, trying to be prepared for winter storms. It turns out not every area/community/company offers that option. In our rural area, when I called about getting a medical alert set for the home address due to life-sustaining medical equipment, the power company told me that their only suggestion was that I get a generator, or call an ambulance for a ride to a hospital that would have power. If we had a power outage, we were on our own. Restoring power was based on the number of customers impacted. Fortunately, we already had a portable generator that I had purchased for doing work around the property, and I did keep gas on hand, but only a couple of gallons.
Less than a week later, I was at work when I got a call from the caregiver that a big storm had knocked out the power at the house. The Trilogy seamlessly switched to battery mode. There was no panicked scrambling for the backup battery. Another life-threatening crisis had been averted because of the previous week’s incident. I had the caregiver hook up the land line phone in case she needed to call 911, and then I called the neighbor to come down and fire up the generator. The power company had no ETA for when our power would be restored. It was cold The caregiver spent the next four hours alternating the generator power between the Trilogy, the Kangaroo feeding pump, the lights, an electric blanket and a portable heater. I checked the forecast before I left work; it called for high winds, snow and ice moving in over the next 24 hours, so on the way home, I picked up a 5 gallon can of gas for the generator in case we lost power again.
Literally as I pulled up to the house, the power came back on. Mary was bundled up under multiple layers, but was joking with the caregiver. Despite the unexpected and early winter storm, we did not lose power again that time.
When someone is dependent on equipment to breathe, when they have no ability to breathe on their own, backup power is crucial. Having the Trilogy with its rechargeable internal power supply kept Mary alive. Having a generator ready to go with gas on hand helped keep her alive. Having a neighbor who happened to be home and willing to help out was priceless. All of this meant there was no “fourth time Mary almost died.”