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Catherine: Our house is small, and this equipment needs a lot of space. Vivian just has so much stuff. We had to rearrange the furniture to fit her bed in the living room. She sleeps there now so the night nurse can be with her. There’s medical supplies scattered all over the place and cords everywhere. Trach ties, suction tubing, formula, medication, they all need their own space. Even if there isn’t much space.

Life in our house is completely different with the trach and vent. We don’t go out much, and the nurses are constantly coming and going. My husband and I feel like our privacy is invaded. I can never let my guard down!

Traveling gives us a change of scenery and escape from our everyday chaos, but it’s a lot of work to get ready. We have to pack the vent, oxygen, suction machine, and two bags of emergency supplies. It takes an hour to get it all ready and then you’ve got to triple-check everything. We had to trade in our car for a full-size van to fit all of Vivian’s equipment and supplies that she needs with her at all times.

We try our best to help Vivian participate in family life. She has a special chair that gets her high enough to look out the window. Occasionally, we’ll strap her ventilator, suction machine, and to-go bag with all our supplies onto the stroller and bring her to a festival in town. Vivian loves listening to the music and, for a moment, it can feel like we have a pretty normal life.

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Mary: The first week home with Chayton on BiPAP was stressful because we were learning how to care for Chayton, how to use his equipment and the monitors and what the alarms meant.

The nurses had showed us how to use the pump for his feeding tube, the BiPAP, the sat monitor, and the oxygen. Chayton needed breathing treatments and multiple medicines for his seizures. It was overwhelming. I was so scared before leaving the hospital, and I couldn’t imagine having to deal with a trach and a vent too!

The hospital arranged for nursing at home, eight hours a night. But, the day we got home, the nurse didn’t show up. She wrecked her car. She was ok but couldn’t come. We live in a small town on the reservation. It’s three hours from the children’s hospital and there are not a lot of nurses who will come out here. We hardly slept at all that first week.

But after a few weeks, we had it down. We knew what to do. And our two nurses became like part of our family. There are still challenges. Sometimes one of the nurses’ kids get sick and they can’t come. We may go two or three days with no nursing help. Those days we don’t sleep. We are up with the alarms or the feeding pump is empty or the BiPAP mask is coming off. We can be really tired but have to get up and go to work.