Prepare for the Unexpected
With CDH, comes the potential for unexpected hospital visits. It is always a good idea to plan for these moments and have a plan in place for how you will handle various situations. There is nothing worse than trying to pull everything together mid-emergency, so do it now and be ready for anything that may occur!
Educate Yourself - CDH kids have an increased risk of emergencies such as bowel obstruction, pneumonia, and reherniation. Be sure to educate yourself on what symptoms to look for so that you can recognize issues that may arise quickly and easily. Also, ask your doctors for safe doses of over-the-counter medications that can help relieve symptoms until you can get additional medical help (i.e. Acetaminophen, Ibuprofen, Benadryl, etc).
CPR - At discharge, your hospital should train you in CPR - if they do not, please ask to take a class. Be sure to pay close attention to these instructions and take notes to help you remember later. As you are home and move farther out from discharge, consider taking a refresher class or reviewing your notes to stay confident in this vital skill.
Medical Form - Create a medical form that lists all caregivers’ names, your address, any medicines taken, therapies, doctors/specialists' names, and a brief medical history (including surgeries dates, ECMO, and anything else relevant to their care). Keep a copy of this form in your purse, diaper bag, attached to their car seat, and with any other caregivers they may have. This form will allow you to quickly inform EMTs, registration at the ER, or new doctors of everything they need to know! It will speed up the check-in process and allow you to attend to your baby by simply writing “see attached” on forms instead of attempting to list it all out while dealing with a sick child. This form is also essential in case there is ever an accident and you are unable to relay information to the EMTs.
Go Bag - Pack a bag for you and your child containing everything you need should a hospital stay occur. Anytime you call for transport or go to the ER bring the bag with you. Being prepared will allow you to stay with your child without needing to run home and grab things or rely on someone else to know what to grab. You can find a list of what to pack here.
Trunk Supplies - Keep a spare outfit for each family member, a warm blanket and basic medical supplies in your car at all times. Extra diapers, wipes, toilet paper/tissues, and a first aid kit are also highly recommended. Think about what you would need if you are out and about when an emergency occurs.
Medical Supplies - Stock up on the medical supplies you will need should an illness, injury, or emergency occur. Have a reliable thermometer, pulse ox, humidifier, and possibly even a stethoscope on hand. Ensure your medicine cabinet has fever-reducing medication, an antihistamine in case of an allergic reaction, and cough medicine, as well as various size bandaids, antibiotic ointment, hydrogen peroxide, gauze and medical tape. It is also helpful to keep travel-size versions (in childproof containers) of each item in your purse or diaper bag as well if possible.
Sibling Plan - If you have other children, be sure to plan ahead for where they will go should an emergency arise with your Tiny Hero. Who will be on standby? Discuss your plans with this person and ensure that they are not only in agreement, but also trained to handle your children’s care (including your Tiny Hero). You will want to know they can run the oxygen, administer a tube feed, and give medicine at the correct times should the emergency occur and you are unable to perform these duties yourself.
Train Siblings - Teach your older children how and when to call 9-1-1. We hope it is never necessary; however, this skill could be lifesaving should an emergency occur. It will allow you to stay with your Tiny Hero while they assist you in making the call. If the siblings are teenagers and maybe babysitting, include them in your CPR training and teach them how to administer feeds, medicine, and oxygen just in case. If you do not have older children, consider training a neighbor who is typically readily available just in case you need them to run over.
Emergency Contacts - Create a list of important phone numbers and place it in a prominent location such as the refrigerator. This will allow everyone easy access to the numbers they need should an emergency arise. Attempting to find a number while in the throes of a crisis can be stressful – avoid that by having them ready to go. Be sure to include poison control and any numbers a babysitter may need, such as grandparents or even a neighbor if they cannot get in touch with you. Keep a copy in your purse, diaper bag, and go bag if possible.
Care Plan - Along with the medical form and emergency contact list, be sure also to create a plan of care. Write out your family's schedule (including feeds, sleep, medication, and therapy times). Detailed bedtime routines, school drop-off details, any allergies, and anything else someone may need to know should an emergency arise with you will all be highly beneficial in a time of need.
Organize Files - CDH kids tend to come with many phone numbers, bills, and documents to manage. Using the tips in our File Organization blog will help control the chaos and ensure that all essential documents are easy to locate when an emergency arises.
Using these tips and tricks will help you feel prepared for anything that may arise! You will hopefully be able to rest easy knowing you are stocked, planned, and prepped for all of the unknowns that come with CDH. It will also allow you to be present in those scary moments and available to meet your child’s needs without needing to run around packing or frantically making last-minute arrangements.
