A Day in the Life of a Medically Fragile, Medically Complex Child and Family
written by Katie Voight
I wanted to take a minute and introduce myself before I dive into a day in our life. My name is Katie, and I am a mom, wife, daughter, sister, granddaughter, and a full time nurse. I have two amazing, beautiful, unique, and strong children. First, is my 14-year-old daughter. Her name is Cheyenne. As everyone says she is my mini me. She is bold, daring, creative, kind, loving, funny, beautiful, plays the flute in the band, loves art, reading, and spending time with her friends and family. Second, is my 8-year-old son. His name is Garry. He is my medically fragile, medically complex child, and he has autism. He is a fighter, warrior, brave, strong, kind, funny, loves to play outside, loves swimming, and loves his family. I am going to guess most can relate to having a child with extra medical needs. We are a part of two unique groups: the complexity of medical and health issues and then the autism piece.
I decided to go with the title A Day in the Life… because this is a topic so many will understand, connect with, and feel on some level. My day begins at 5:30 am almost every day (Monday-Friday). I get up, get ready for work, begin or finishing packing lunches, fill up water bottles (including an extra one for my son for school as he requires thickened liquids), and waking up the kids to start their day. Somewhere in this process I fix something for myself for breakfast, usually something I can eat on the go.
As I continue with these morning tasks, I begin prepping my son's morning meds (4 syringes and 4 med cups). No longer do I need to stop and think about these meds and what he gets, as it has become second nature over the last 7.5 years. Once his morning meds are set, I get his feeding bag ready for school, it gets placed in his backpack and is ready to go. I continue working on getting the kids up, ready, and hope to be out of the house on time. I get him up, dressed, give meds, and ready for the day. Also ensuring my daughter is up, ready, and all set for the day and leaves the house on time to catch the bus. I leave the house and go get my grandma and bring her and my son back to my house. She helps me every day with putting him on the bus for me. Once they are dropped off back at the house I head into work.
After work I come home check my son's communication log to see how his day went and what kind of day he had and unpack his lunch box and feeding bag. I place his feeding pump back on the charger, so it is ready for the next day. Since he has a lot going on medically his communication book allows school and I to communicate easily and if they notice anything it gives me a way to relate information to his medical team.
From the time I get home from work until after dinner is pretty "normal" in the sense of unpacking everything from the day to fixing dinner. After dinner begins the evening schedule. This consists of preparing my son's colon flush (he has a MACE which helps with chronic constipation), hooking him up to the flush, letting it run, and ensuring my daughter is working on her homework. His flush takes about 21 minutes to run in and then about another 25 minutes to take effect. While his flush runs, I attempt to multi-task and get other things done (laundry, cleaning, helping my daughter with homework or whatever she may need, and anything else I can get done during this time).
As the night goes on, I try my best to prepare for the next day as much as possible. Once his flush is complete, he either takes a shower and then gets into his pajamas or just puts on his pajamas. Bedtime meds follow, again just second nature at this point. Once all bedtime meds are given, he heads off to bed, and I continue doing what needs to be done. It’s important for me to check in on my daughter to see if she needs anything, needs help, or just simply spend some time with her.
Typically, my day ends around 11:30-12 and repeats the next day. This is a "normal" day in our life. This brief glimpse doesn't show what the day looks like if we must spend all day at our local children's hospital for appointments which includes his monthly infusions. Not included is every other Monday night of music therapy for my son.
No two days in our world are ever the same. This sense of a "normal day" doesn't have factored into it any illness that we are battling, flare ups he may be experiencing, or even just simple fatigue. If he is sick, tired, or just not feeling his best, there is the extra of packing him and everything he needs to go spend the night with my mom. When he is sick, tired, having a rough day and simply can't head to school, he stays with my mom so I can still work. Finally, this brief glimpse doesn't even have factored in the nightly growth hormone injections we will be starting.
Every day in our world is filled to the max. Each day is filled with constant nonstop worry, unknown, uncharted territories, always on alert, waiting for the next crisis to happen, never letting my guard down, constant behaviors associated with his autism (stimming, sensory seeking, avoiding meltdowns when possible, embracing and riding out the meltdowns, the constant need for routine, the constant need for consistency, repetition, always needing to be moving, same foods every day). Despite it all, every day is also filled with love, laughter, help and support from the community we have built. We enjoy the life God has given us, blessings, making memories, cherished moments, advocating, fighting, never giving up, hope, prayers, strength, hugs, kisses, smiles, and of course lots of coffee!
Thank you for the chance to share a small glimpse of what it is like inside our daily world. This is not an easy world to be in or a part of as most of you all know.
Katie is a mom, wife, daughter, sister, granddaughter, and a full-time nurse. She has two incredible children, Cheyenne and Garry. She loves to read, take walks, enjoy art, and spend time with her kids. Katie and her family live in Lees Summit, Missouri.
