Your Child’s Experience Topic 5A

Quality of life

Parents of children with breathing problems can have different ideas about what "quality of life" means for their child.

You can listen to two different family experiences below.

Kiana

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Kiana: Devin can go to school and be around other kids his age which is so good. Children need that, you know? We are able to get out more and go places. He looooves to ride in the van. He just gets a kick out of it. So, I would say his quality of life is really great.

It’s not easy to take care of Devin, but I’ve gotten used to it. It would be much better if his father, AJ, was still around because as an 8-year-old boy, Devin would love to have his dad around more. AJ comes over sometimes, but not that much anymore. He’ll bring his daughter around every other month or so and spend some time with Devin. Even then, it’s not like I get that much of a break, I still can’t go back to school or really do anything for myself because I don’t trust anyone with Devin. Not his dad, not even his nurses. So, yeah, if his dad was more involved, I think Devin’s quality of life might be better, and I would have a little time for myself. But we are okay, and Devin is a happy boy. Since he came home with the ventilator, let me tell you, we have been in the hospital much less. Devin is able to live his best life, gosh, much better than before the trach.

Mary

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Mary: With the BiPAP, we can take Chayton outside more. He likes to go with us to the store, or to the rodeo. We even got him on a pony. That was something. He smiled so much. He can still do that. He likes to be with his brothers. They are so good with him.

We were lucky because the BiPAP wasn’t the doctor’s first suggestion for Chayton. Last year, when his muscles were getting weaker and he couldn’t breathe good enough on his own. The doctors said Chayton might be more comfortable with a trach. My husband and I weren’t sure what we should do for our boy. Chayton he had gotten so sick after the gtube surgery, and the trach surgery seemed like a way bigger deal. And he might not be able to talk after the trach, and he would hate that, that’s for sure.

Also, the trach was no guarantee of anything either - the doctors said that even with the trach and vent, Chayton might only be with us for a few more years. So, we decided against it. We went for BiPAP instead to hopefully get him home and give us a little more time, knowing it would be short no matter what.

Chayton was so happy when the lung doctor said he could come home. It has taken him time to adjust to the BiPAP for sure. But slowly he did. Now he feels how it helps him and some days he doesn’t want to take it off at all.

We’ve had more time with Chayton than we thought we would and we are so grateful.