She noticed the tubing first. It was filled with moisture, the kind that settles and stays when nobody has taken the hose apart and let it dry. Then she looked at the rest of it: the mask, the water chamber, the whole kit that sat beside her father's bed. None of it had been cleaned. It had been used that way for about two to three years.
Her father is 91. Every night he breathed through that tubing.
She called what she found horrendous, and the word stayed with her. The worry that followed was worse. His nights had been rough and he was not sleeping well, and now hers were rough too. She lay awake thinking about the machine in his room and everything she had not known to ask about it.
The call
She called us because she wanted the machine replaced, and she wanted it done quickly. Our team went to the house.
Our respiratory therapist looked over the old setup and asked the question that matters most with any home breathing equipment: how often is it cleaned? The answer was that it never had been. Nobody had shown the family how. The therapist was shocked. The point was never to find someone to blame. The point was what to do next.
What his doctors were watching
Her father lives with bronchiectasis, a lung condition that makes it hard to clear mucus, and he also has trouble swallowing. Several specialists follow his care. In August his pulmonologist reviewed a sputum result and judged that, given how he was doing at the time, the organisms found were most likely living in his airways rather than causing an acute infection. A culture taken in September showed a light growth of ESBL-positive E. coli and Pseudomonas aeruginosa, and the family says he completed an eight-day course of antibiotics. His lungs stay in his doctors' hands.
The old equipment was never cultured, so no one can say whether it had anything to do with what was found in his sputum. What the family could do was make sure that from now on, the air reaching him passed through clean equipment.
The afternoon at the house
Our team replaced the machine and set it up beside him. Then the therapist sat down with his daughter and went through the kit piece by piece, the way you would show someone how to care for anything they mean to keep.
Here is the mask cushion. Here is the water chamber. Here is the tubing, and here is how you hang it so it dries all the way through. A mild soap, warm water, a proper rinse. Distilled water in the humidifier. For his setup, the routine is simple once you have seen it done: the mask cushion and the water chamber every day, the tubing and headgear once a week.
While they worked, the therapist noticed something else. Her father breathes through his mouth. A nasal mask had been planned. The therapist fitted a full-face mask, which covers both the nose and the mouth, instead.
The first nights in it felt strange to him, as any new mask does. So they took it slowly. For about a week he wore the full-face mask only during his afternoon and daytime naps, until it stopped feeling new. After that he began wearing it at night, and he now wears it every night.
His daughter learned to fit it herself. She knows where the straps sit, how snug is snug enough, how to check the cushion before he lies down. The equipment in his room is no longer a mystery she worries about in the dark. It is something she knows how to look after.
Now
She is very happy, and very pleased. The fear that kept her up has eased into routine: a rinse in the morning, a chamber left to dry, a hose hung over the rail.
"I finally know what I'm doing, and I know he's breathing through something clean."
We asked what she would tell other families bringing a parent home on a machine.
"Be sure to give your caregivers proper instructions, and educate them properly."
Then she added the part she learned the hard way. Make sure whoever looks after your loved one has actually been taught how the equipment is cleaned and maintained. And get professional help, because it is your loved one's life.
Most evenings now, before her father settles in for the night, she lifts the tubing to the light and looks through it. It is clear.
If someone you love uses a CPAP or BiPAP machine at home and nobody has shown your family how to care for it, message us. A licensed respiratory therapist can walk you through it at home.