Creating a Care Notebook

Having a child with complex medical issues can get overwhelming. Even just the paperwork and information can get overwhelming. I’ve found that getting some things organized helps me feel more in control and more prepared.

One idea is to create a Care Notebook. A Care Notebook includes contact information for your child’s doctor, diagnoses, a plan of care, a record of appointments and more. This helps keep the information organized and in one place. The Care Notebook doubles as a safeguard for a caregiver to use in case of emergency or in case something happens to you and you are unable to care for your child. To me, a Care Notebook means order and peace of mind.

Start with a 3-ring binder, some dividers and page protectors. I use a divider for each doctor. Create a cover sheet for each doctor that lists the doctor’s name, specialty, nurse’s name, phone number, email address, street address, etc. Leave a space for any special notes you want to add.

At the front of the binder, include a directory list of all of your child’s doctors, their specialty, and their telephone numbers for quick and easy reference. Also at the front, keep a list of medications your child is taking, the dose, who prescribed it, when your child started taking it and what the medication is for. Keep the list updated. This is also a great place to keep a copy of your child’s shot record.

Next, go through the notebook one doctor at a time. Write a brief medical history for that medical area. Include surgeries, hospitalizations, and medications. Include things that have been tried, things that have worked, and things that have not worked. Include an explanation why this doctor is providing care for your child.

Create a generic sheet for preparing for an appointment that you can copy and place behind each divider. As you have questions or concerns, you have a place to jot down a list for the upcoming appointment. You can include any medications that you have questions about or refills you may need. You can take this sheet with you to all your child’s appointments and never have to worry if you’re remembering all your questions.

Create a generic appointment summary sheet that you can copy and place behind each divider. You can fill out a summary sheet after each appointment. You’ll want to include the reason for the appointment as well as the proposed plan of care. Include any medication prescriptions from that doctor and which pharmacy filled the prescriptions. Include space to record any side effects or reactions to new medications. Be sure to file the summary and any other paperwork in your notebook.

Once the Care Notebook is created, you can choose to take the notebook along with you to appointments or not. You may decide it’s helpful to have with you. Or you may decide it’s too big. Either way, a Care Notebook is a handy thing to have at home for sure. No more digging through piles to find important lists or notes. Everything is organized and in one spot.

There are many different ways to create a Care Notebook. Some include forms you can print and fill in, others include forms you can complete on your computer and print. You can save the information on your computer, too. Choose what works for you and your family. 

Check out the Cook Children’s Family Medical Planner and Texas Parent to Parent’s Care Notebook for more ideas and options. This website’s page on Organizing Medical Records: Creating a Care Notebook also includes helpful information and resources. Need more? Google “care notebook” for even more ideas.