Faces of Caregivers: Kelly Capener

My caregiver journey is full of many people. I am a single mom to five amazing kids, and I was a foster mom to six amazing boys. One of those boys we adopted and he is considered in the medical world to be Medically Fragile and complex. He was born at 27 weeks and spent the first two years of his life in hospitals, nursing homes and foster homes. He has a trach and feeding tubes. He has chronic lung disease and subglottic stenosis (his airway is swollen). He also aspirates on his saliva and is not able to eat any food by mouth. Because of these challenges J.J. requires 24/7 care. He is always at risk of having a medical emergency where he could end up coding and needing to be resuscitated. Thankfully, that has only happened twice in the four years he has been with our family.

Because of his high level of care needed, it means I am on duty full time all the time.

Kind of like having to be a helicopter parent to ensure he is safe at all times. In my spare time I offer support to my four teens as they navigate entering adulthood and deal with various challenges from trauma they endured years ago.

A day of care for J.J. includes….
We start our day with suctioning his airway to help get things clear.
We start up his nebulizers with his airway breathing treatments.
We blend up his food for the day which is about 2,500 calories using real food.
We pour it into the bag and put it in his backpack that he will carry for 14 hours and run the food through his feeding pump.
We change his trach ties and clean the area around his trach to make sure he stays infection free.
We check his oxygen levels throughout the day.
We suction him as needed to prevent him from having plugs in his airway.
We also manually vent his Gtube to help him burp as he has a nissen that prevents him from refluxing.
We change his trach if needed because of a plug.
At night, J.J. sleeps using a vent to give his lungs pressure support.
We wake up every hour or so to reconnect him to the vent or to dry out the tubing. He is a wild sleeper.
We monitor his oxygen levels all night long and connect him to oxygen if needed.
We must always have an emergency bag with us wherever we go that has spare trachs, spare feeding tubes and a portable suction machine.
In between all of his care, I am homeschooling him and one of his sisters and making myself available to my other three kids who have graduated, but still need mom’s input on various tasks LOL.

No Barriers told me it is okay to take some time for self-care.

It is needed to fill my cup so that I can then fill up others cups. I do not take time for myself and I know that can make me feel even more tired than I already am. I am thankful for the self-care challenge. I am not actively doing it daily yet, but I at least think about it daily and I am really trying to be okay with giving myself some downtime to enjoy the things I like to do!

Baby steps and now I have an amazing group of new friends to hold me accountable that understand the challenges I face each and every day.

November 18, 2021 Support our Caregivers Program
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