Description
Steve started using this primarily at night. When he struggled to breathe more, he would use it periodically throughout the day. He would get his breathing “fix” or reset.
Eventually, he used it more during the day. He would take it off to eat and brush his teeth. Through his decline he found ways to work, present, and record videos. He also walked both of his daughters down the aisle. By late 2024, he was on the NIV 24 hours a day. He consumed a lot of energy and brain power focused on breathing. This huge amount of stress went away when he got his tracheostomy.
We bought an external battery and carry case through someone in an ALS group. This battery gave us more security as we traveled around. The carry case made it easier to hang on the power chair. Overall, we were very happy with the Astral system.
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Astral respiratory ventilators | Resmed
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Backup power is essential when your basic needs like breathing require a machine. Most of the equipment we use has battery power like our ventilator and our lifts. The onboard power is usually sufficient but typically only lasts 4 – 8 hours depending on usage. But we wanted to be prepared for power outages and travel.
We had a situation where Steve’s NIV ran out of battery power at an event. We were able to get it plugged in, but it was going to take hours to charge before we could go home safely. Friends and family jumped into help. Our friends got us the Ryobi battery solution and our son in law brought our large generator from home about an hour away. We got home safely, and the importance of backup power was reinforced.
Ventilation Backup Power Estimates
We are using these stages to help you understand when these tools and apps were most effective for Steve.
EARLY STAGE | July 2021 – November 2022
From first symptoms to the walker
Key points
• No ventilation
• Able to walk without help
• Limited upper limb function
MIDDLE STAGE | November 2022 – August 2023
From walker to power chair
Key points
• Limited ventilation with an NIV
• Help needed to transfer
• Limited upper and lower limb function
• Work transitions
• Supplemental nutrition through feeding tube
LATE STAGE | August 2023 – Current
Power chair
Key points
• 50% to full time ventilation
• From NIV to tracheostomy
• Lift transfers
• Loss of limb function
• Most nutrition through feeding tube
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