Life at Home with a Trach
Nursing: Sacrificing some control, we had to expand our village.
The mom of a son with an extremely rare genetic condition talks about giving up a little control over her son, Quinlan’s care by inviting nurses into their home to help care for him. She discusses how the nurses on his care team became part of their family and realizing that having people to help her was necessary in order to give Quinlan the best life.
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There is no road map when the diagnosis is so rare.
Nursing: Sacrificing some control, we had to expand our village.
Tracheostomy: It’s a big decision. What will be the impact on the family?
Tracheostomy and Decannulation: Reassessing benefit over time
A nurse: The hardest part about caring for a child at home with a trach is that it’s 24/7
We’ve had some scary moments with the trach.
I did not want to isolate him. He loves school.
Moving through the initial scariness, you can be trained.
When he wants to do something, you just want to move heaven and earth.
I wonder if I project my own feelings on to him.
You can still find a place for the vent and do fun things.
He's doing great. He's fantastic, even if his normal is terrible.