You can listen to two different family experiences below.
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Marta: When the doctors told us about the trach and vent option for Miguel, we knew it was the best choice for us. We couldn’t just keep living at the hospital – that wasn’t going to work. Miguel was born premature and had already been in the hospital for months before he could even get his trach surgery.
Tomas: All we wanted to do was get him home so we could be together as a family. It was hard with one of us at the hospital and the other home with our 4-year-old Sammy. Marta and I hardly ever saw each other.
Marta: Yeah, and we didn’t feel like Miguel was making much progress in the hospital. For him to be the best he can be, he needed to be held in the love of his family.
Tomas: We knew it wouldn’t be easy, with everything we had to learn about, like how to take care of his tracheostomy, how to suction, how to work the pulse ox machines and the feeding pump and everything. It was basically like taking the whole hospital home with us. It was scary, but doable. We have a big family and some of them are able to help us with Miguel.
Marta: I’m happy we went for the trach and vent, because I can see my baby acting like a baby, and not using all of his energy just to breathe. You can tell that he’s so much happier now!
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John: I know some parents choose the trach and vent option, but it just wasn’t right in our situation.
Ruby was born premature and her lungs were so weak. She spent her entire life on a ventilator in the hospital. We kept thinking she would get better, but she never seemed to. We were in the hospital for seven months so we’d had many ups and downs, lots of time to talk about what to do.
At one point the doctors brought up putting in a trach so that we could take Ruby home with a vent. Her mom and I were no longer together by that point, but we researched what we could about the trach and vent. We talked with some other parents with a child on home ventilation.
But, neither of us felt we could do it alone... you know, take care of Ruby with a vent and probably a feeding tube too. I didn’t have anyone to help out. My parents live across the country and I live in the middle of nowhere! I’m not even sure there are nurses that could come to my house since I’m pretty far out of town. And even if we did get a nurse, it wouldn’t be 24/7.
I knew that if I couldn’t completely care for Ruby, she would end up in some facility and I couldn’t let that happen to her after living in the hospital her whole life. And I saw Ruby, stuck in bed, always on the vent, never seeing the world outside of her hospital room. I just thought, “Is this really the life I want for her?”