5 Strategies for Managing Children Who are Medically Complex

Life with two children with medical needs can be chaotic. It can be messy, medically, physically, and mentally. There are always medications to give, seven for my son twice a day, five for my daughter five times a day. There is always paperwork to organize, medical records to keep and file. Because of the chaotic nature of day-to-day life with medical miracles, systems must be in place to help alleviate the stress that can come with raising children with medical needs. One thing I have found helpful in managing the chaos is organizing the various aspects of their medical lives.

Organization is a key component of life with children who have medical needs. Each aspect of our children’s care has been carefully considered, and accommodations have been made.

Strategy 1: Creating To-Go Bags

To-go bags are packed and hanging by the door, with complete medical histories typed and placed in the bags. My son, Michael, has the larger bag, and his sister, Maiya, has the smaller diaper bag ready and waiting. Duplicates of authorizations and insurance cards have been obtained, and can be found in the front right pocket of each to-go bag respectively. Extra supplies, such as gastrostomy tubes, Tylenol, and a can of Elecare formula can also be found in the bag, along with clothes for the kids, and a phone charger for mom and dad.

Strategy 2: Creating a Medication Management System

Medications are located in separate baskets, each labeled with my children’s names. Designated syringes can also be found here, allowing us to keep one child from accidently getting the wrong medication. Once pulled for the day, the medications go in multiple cups, which I have labeled according to the time of day, dosage, and frequency. Michael has two cups, one for morning medications, and one for evening medications. Maiya has three cups, one for morning medications, one for her calcium carbonate, which must be given three times a day, and one for her evening medications. A separate cup can be found in the refrigerator, containing medications that must be kept cold. Inside the cup is a homemade barrier, which separates her medications from his. Maiya is allergic to red dye, so some of her medications must be compounded differently than her brothers.

As important as organizing their medications is, it is more important to have a medication sheet on hand, and visible. Ours is hanging inside the door of the medications cupboard. This sheet contains dosages, frequencies, and allergens. There is one sheet for our son and one sheet for our daughter so that medications are not mixed up on accident.

Strategy 3: Organizing Medical Supplies

My son, who is fed via gastrostomy tube, has so many supplies that we had to designate a rolling drawer system. Each drawer is labeled according to its contents. The top drawer contains all of his lab supplies and paperwork. The second drawer holds all of the miscellaneous items: tape, gauze, Band-Aids, creams, G-tube pads, and medical scissors. The third drawer is strictly for his gastrostomy tubes. We try to keep an extra feeding tube button on hand, as well as a Foley catheter in case of emergencies. The fourth drawer in the rolling cart contains syringes for bolus feeds, Farrell bags for venting, and water flushes for flushing his G-tube twice daily. Supply orders come once a month, and organizing these supplies is key to making it easier for us, his home nurses, and visitors to find what he needs, when he needs it.

Strategy 4: Creating a Handbook

Out of all of the things in our home that require organization, the most important is our visitor’s handbook. This document contains the ins and outs of our children’s care, with instructions on anything and everything medically related in our home. This book is updated regularly, noting any changes to their levels of care, diagnoses, and medications. We call it our “How to Guide” and have designed it so anyone entering our home would be able to provide medical care for our children.

Outlined in its twenty plus pages are specific instructions for anything and everything. Confused as to how to deliver our sons Epipen? There is a diagram and written instructions. Nervous about giving our daughter her injection? There are two pages on how to properly clean, prepare, and inject her medication, including what Band-Aids are hers; she prefers the Frozen princess bandages. Medication schedules can be found on page two, along with a comprehensive list of allergies and intolerances. Feeding and asthma protocols are located on pages four and five. Asthma protocols are highlighted, delineating breathing levels, an asthma action plan, and warning signs.

Strategy 5: Making a Paperwork Storage System

Medical paperwork is organized in two file folders, one for him and one for her. Discharge plans and medical notes are placed in accordance to specialty. Between the two children we see pulmonology, gastroenterology, neurology, genetics, endocrinology and an allergist. Each visit summary is carefully filed away, along with existing medical orders, and a comprehensive list of diagnoses and medical problems.

Organization Systems are Critical

While life with my children is often messy, it is manageable by implementing systems that I have found help alleviate stress. Whether it be filing medical histories or unpacking medical supplies, I have learned that organization is the key to successfully caring for my two children with medical needs, and making my world a little less chaotic.

Maria Colon is an ex-teacher who has spent the last three years as a stay-at-home mom. She writes when neither of her children with medical complexity needs her. She has two children—a daughter and a son—as well as a dog, a husband and a whole lot of housework.