When you have a child with medical complexity, you quickly realize just how much information there is to keep track of.
Specialists. Appointments. Surgeries. Medications. Lab Results. Imaging. Therapy Evaluations. Hospitalizations.
It's a lot.
Finding a system that keeps important information organized and accessible can make advocating for your child feel much more manageable.
Parent Advocacy
& Organizing a Medical Record
While Beckham was in the NICU, I requested access to his patient portal. The process varies by healthcare system, so ask your child's healthcare team for guidance.
Once you have access, you can usually view things like lab results, imaging reports, clinical notes, medications, test results, and upcoming appointments.
Some of the medical terminology can feel overwhelming at first. You don't have to understand everything. If you see something you don't understand, ask! Learning about your child's diagnoses and care is an important part of becoming their advocate.
Get Access to Your Child's Patient Portal
Keep Notes & Questions
During a hospitalization, there can be an overwhelming amount go information coming at you.
Keep a notebook or use the Notes app on your phone to jot down important dates, test results, changes to the plan of care, and questions you want to ask the medical team.
You don't need an elaborate system. The goal is simply to have somewhere to put the information so you aren't relying on yourself to remember everything.
Track Important Information at Home
Some information is helpful to track between appointments, especially if your child's medical team uses that information to make treatment decisions.
For Beckham, I keep a monthly note on my phone documenting his post-void residuals. I Record the date, catheterization time, and amount each time we cath him.
Having actual data makes it easier to recognize patterns and give his urology tam accurate information.
Depending on your child, you might track medications, seizures, blood sugars, or anything else their medical team recommends.
Create a Medical History Document
Beckham's Neurosurgeon recommended creating one document that summarizes his medical history.
I keep ours as a Word document so that if Beckhams is every hospitalized, sees a new provider, or someone needs a detailed history, I can quickly pull it up instead of trying to remember everything.
Think of it as a quick reference guide to your child's medical history, rather than a copy of their entire medical record.
Organize the Document by Specialty
I separate Beckham's document into sections such as:
Neurosurgery: Doctor Name
Brief summary of important diagnoses, surgeries, test results, medications, and current follow-up plan
Also, somewhere within the document, include current medication list, allergies, blood type, and brief summary of delivery and NICU stay.
Keep It Updated & Accessible
After an important appointment, procedure, test result, or change in treatment, update your child's medical summary.
I periodically email the newest version of Beckham's document to myself so I always have a copy available from my phone.
Whatever system you choose, make sure the information is current, secure, and easy to access when you need it
Remember: You Know Your Child Best
Each specialist may focus on one part of your child's health, but you are the person who sees everything.
You notice changes, remember what happened between appointments, communicate information from one specialist to another, and can speak up when something doesn't seem right.
Being your child's advocate doesn't mean you need to know every medical term or have every answer.
Start Small. Ask questions. Learn as you go.
No one knows your child quite like you do.