Organizing your Records
1. Notebook or Binder: Depending upon where you go for care, your hospital may send you home with a detailed binder organized with your baby's entire medical journey. However, if they don't, you can easily create something similar. Simply grab some binder dividers or hanging folders and label the tabs with relevant headers. The labels may say "bills," "receipts," "records," "evaluations," "therapy," "important document," "imaging," and "current medical documents." Then, get all the paper hole punched and add to the binder or drop into the correct hanging folders in your file box.
2. Condensed Medical Record: There will likely be many times where you are asked to recall your child's entire medical history on a new patient form, sports application, or school enrollment form. Chances are, you will be given one or two lines to sum up your child's entire medical history. The best way to make this possible is to create a condensed, one-page form that you can staple to the form and write "see attached" in the one line provided. This will include medical history, family medical history/past surgeries, allergies, doctors/specialist numbers, immunization records, past and present medications, and diagnoses. Click Here to download a great example/template!
3. Car and Diaper Bag: Emergencies don't always happen at home where your binder or hanging folder may live. For this reason, it is important to ensure you keep a condensed medical record in various locations. One location to include is the car. It can be easily attached to your child's car seat with the letters "I.C.E" (in case of emergency). This way, if there is ever an accident and you can't give them your child’s history, it is all there for them. You can also leave a copy in the diaper bag or your purse. Additionally, leave a copy at your child's school or on your fridge for babysitters.
4. Imaging CD: Before you leave the hospital, swing by records and request a CD of all imaging that has been done. This way, if your CDH baby gets sick and needs to go to a different hospital, they will see what your baby's lungs look like when they are healthy and compare them with what they see that day. Some CDH kids have naturally hazy or small lungs that resemble pneumonia, leading to a misdiagnosis. You can also call your treating hospital’s medical records department at any time to request a CD.
5. PDF Records: Also, before leaving the hospital, you can request your children's full medical record be placed in a PDF. This will allow you to keep a copy stored safely on your computer or external hard drive in case something ever happens to your binder/hanging folder system. Consider uploading it to Google Drive or a similar cloud service so you can access it from any computer (you may want to mark out any identifying information such as social security number before uploading).
6. Phone Apps: Believe it or not, there are even apps you can download on your phone to organize medical records. Definitely do your research if you decide to go this route. Putting it on your handheld device is a great way to make sure you have access to it when you need it!
No matter which way you go, the important thing is to make sure the papers are all in one place, easy to access, and that the system is sustainable. These records will likely need to be updated or added to regularly so it is important to find a format that is easy and convenient for you.