When The Lights Go Out

When you have a kid with a trach life is different. That trach becomes their airway. An airway that can be a bit complicated. And a touch scary every once in a while. Especially if your kid is on a vent. So as a parent you have to learn how to adapt.

One of our adaptations is our version of the ‘family bed’. Because Parker has a tendency to stop breathing at night, and because he needs a vent to insure that his breaths are deep enough to oxygenate his blood while clearing out the proper amounts of CO2 from their system. The vent helps Parker not to have to work so hard to breathe too.

During the night a trached kid on a vent is hooked up not only to the vent, but to an oxygen supply and, in Parker’s case, a feeding pump and a pulse ox monitor. This means that a lot of alarms can sound during the course of a night.

A Lot.


But these alarms provide a very important service. They let us know if Parker is in trouble with his airway, his oxygen supply, or if he just needs a Neocate refill.

Because of needing to be able to hear the alarms, and because a trach and a vent can be such a tricky business to attend to, someone has to always be with Parker during the night.

That person is usually Reed. And this is where he sleeps:


Granted, this arrangement ain’t gonna make the cover of Better Homes and Gardens, but it allows easy access to care for Parker during the night. And let’s just say that he requires a lot of care.

A Lot.

Reed insists on being Parker’s Night Nurse. He feels that since I am responsible for Parker’s cares, his preschool activities and therapies during the day that I need my sleep at night. Is that not the sweetest thing ever to do for me? Yet another reason why I love this man so much.

It’s all about peace of mind. I have known parents who have lost their precious children because of airway issues and they weren’t able to hear the alarms. It is easy for a tired parent to sleep through an alarm if they aren’t right next to it. Like I said, trachs are a tricky business.

And it is all about waking up to this sweet and healthy face each and every morning:


The same sweet face that takes his pulse ox alarm off of his foot each morning KNOWING that it will alarm and let us know that he is ready to get up. And no, we don’t encourage him to put this in his mouth. He was just being a goofball for the camera.


But isn’t he the cutest goofball you’ve ever seen?


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