Home Care: Sleep Deprivation, Mistakes, and Pushing Through

by Shelbi Cobb

277 days have passed since coming home to this new life.

My son turned three years old this April and has spent the last year fighting for his life while becoming the most resilient and brave little boy. We’ve had to hospitalize our home, welcome strangers into our home, and change our lives drastically.

I frequently get asked, “Does all this scare you,” and “How do you do it?” My response usually is something similar to, “Yes, it scares the hell out of me but I do it because I have no choice. I have to. This is our life.” I’ve had different adjectives used to describe me such as brave, fearless, and strong. But, I’m just a Mom. A mom who is terrified, but whose love for her child overpowers her fear.

There are never ending uncertainties that come with home medical care, at least for me. One small mistake could cost his life.

A Sleep-Deprived Mistake

There is a story that I’ve told about 1000 times, but I cringe at the thought of it every single time. Last November, my son was discharged from the hospital after 119 days of fighting for his life. We had been home for around two months. My life was a hot mess and I rarely slept. My son infuses Parenteral Nutrition and Lipids daily through an intravenous line. We use two little annoying, feisty, pumps on a hospital grade IV pole. (I say hospital grade because the cheap one we received initially was not equipped to handle the life of a superman-loving toddler.) These pumps were labeled TPN and Lipids on the back battery covers.

Easy, right? Nope.

After we got home from a 15-hour appointment day, which was in a neighboring state, I was setting up his pumps. Long story short, I mixed the two pump battery covers up while changing the batteries out and ended up infusing TPN at the lipid rate, and vice versa. Totally different rates and volumes, and potentially very dangerous.

I crashed. I was tired. I woke up four hours later to the pumps going crazy and my son retching and lethargic. I had overdosed him on lipids and didn’t give him enough IV nutrition, which was his only source of sugar and hydration. Did I mention he was NPO, no food or drink? We were lifeflighted to the hospital, and upon arrival his blood sugar was 46.

Home health care is scary as hell. I believe as a mom I will live the rest of my life in fear for him now.

Pushing Through

Living this life is beyond exhausting. Sleep is something I feel like I will never catch up on, even more so than my laundry! I feel like my house is one big hospital room with medical stuff everywhere. It’s nothing to find 15 to 20 sodium chloride flush syringe caps each time I sweep. It’s everywhere. It’s never ending. I’m in charge of running a doctor’s office, home, and pharmacy. I seriously think there are days I could fall asleep leaning over the counter.

The life of a toddler who is medically complex is so complicated, but so worth it. I love my son with all my heart. I will do this for him until the day I die if I have to. There are days that I don’t think I can do it any longer, though. But then it hits me how much he needs me. He needs me to be his nurse, medical advocate, teacher, taxi service, and most importantly his mom.

I will continue to pull the alcohol swabs out of my pockets at the end of the day. I’ll keep sweeping up flush caps that are occasionally used as weapons in our house. I will keep spending hours upon hours each week fighting with insurance, doctors, and any other obstacles that arise. I will keep doing it because it is worth it. I watch him smile and laugh every day, and that is enough to make this crazy, medical-centered life livable for our family.

Author: Shelbi Cobb • Date: 8/25/2018

About the Author

Shelbi is a mother to a beautiful 15-year-old daughter, and the bravest 3-year-old boy. She’s been married for 5 years, and lives in a small Kentucky town. She is a middle grades teacher, currently not teaching so she can care for her son. Brady Joe was born with laryngomalacia and subglottic stenosis and also is now living with short gut syndrome, anemia, portal vein thrombosis, and severe anxiety. She likes to share their story, and express her thoughts through writing. 

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