Saturday, February 11, 2012

CHD Awareness Week - Medically Organized

Each day for CHD Awareness Week I'll be posting about the 7 most important things I've learned as a heart mom.   From practical to spiritual, the past 2 years have been a new experience for me and for us as a family.  My prayer is for these insights to help educate and encourage my fellow heart moms and others who follow our journeys.   

Don't forget to check out this post for a special heart giveaway!
AND another Heart Momma, Joye, also has an awesome giveaway on her blog!

I’ve learned how to create a medical notebook.

Medications, procedures, feedings, appointments...information overload, especially for a new mom.  Organization made it so much easier to track all of Liam’s care, plus have everything handy and in one place should we need to quickly get to our closest ER.  In fact, my parents have actually used this notebook at the ER when Dustin and I were out of town.  It’s presence in our life is irreplaceable.  We even made a copy of this notebook for the daycare, when Liam was attending, and it made everyone feel at ease, mostly me.

The BIG binder with EVERYTHING!
The portable emergency binder
I thought I would share what we keep in our medical notebook.  Granted, I have a much BIGGER organization binder with EVERYTHING we’ve ever received medically for Liam, but this portable emergency notebook includes everything that would be needed should we not be the ones providing his care.  We used a flexible red notebook with sheet protectors to contain all the info.  And at the end, if you want some extra resources, I've provided free downloads of all the forms I've used (most are re-done in a better format, the ones I currently have in the binder need some updating!). 

First page:  Emergency Medical Summary Sheet

I decided to create this first sheet as a snapshot of all the pertinent information the other sheets have, but only what would be critical to know as quickly as possible in an emergency situation.  Our cardiologist told us, if we ever went to the ER, he requests that he be notified immediately, no matter what.  So you can see above at the top, I clearly have that stated.

Second Page:  Consent to Treatment of my Child

This is important if others are caring for your child (or when you will be out of town, etc.).  This is a release you sign to allow those “others” to sign off on medical treatment for your child while you are unavailable.

Third Page: Emergency Information Sheet

This is a continuation or more detailed version of the first page, and includes places to list things like blood type, allergies (although these probably should be added to the summary sheet also), name of preferred hospital, religion, Emergency contacts, etc. 

Fourth Page: Insurance Information

While a copy of your insurance card would be completely acceptable here (and I recommend you insert a copy of it on the backside of this form - see below pic), it’s good to write out all the information, including the policy holder’s information since the cards usually don’t include that.  Also, if you have secondary insurance or Medicaid, you can group everything together on one page for easy reference.

Fifth Page:  Medical History (optional)

During one of my attempts to get Liam approved for therapy, the therapy group required that I submit a  report on his entire medical history (surgeries, procedures, swallow studies, hospitilizations, etc.).  Talk about overwhelming!  Thankfully, he was still less than a year old, so things were still somewhat fresh in my mind (and my calendar!), so I buckled down and about 4-5 hours later emerged with this lovely Excel spreadsheet (right side of notevook pic) with EVERYTHING (I even include doctor’s appointments) that he has been through medically.  While I can’t say this is completely necessary, it is nice having a complete history in case it’s needed down the line – as it was once for therapy approval.  Once the back-tracking was done, all I do now is update it every time he visits a doctor.  (Although, I need to update this, I'm a little behind as you can see!)

Next Tab – General Information

Child and Family Information – Includes parent and sibling information, addresses and emergency numbers.

Health Care Providers – Includes a detailed list of all your child’s doctors, specialists, therapists, preferred hospital and other health care providers (can also include here medical supply companies, home health, etc.)

Copies of all current medication bottles – prescription and non-prescription that your child is currently taking.  I started this when I was frequently asked the potency levels of his nebulized treatments, and at the time I didn’t know, I just knew the name of the medication and what dosage we gave.  I also include a copies of any supplement, vitamin and OTC drugs (which you can usually find print outs online, especially for supplements) I am currently giving. 

Next Tab – Heart Notes

The next tab I file all of the letters we receive from our cardiologist after each check-up.  I also have a copy of his Contegra Conduit medical device implant card filed with these.  

Last Tab – Other Information

This is where I file the Care Guides for Liam’s Mic-Key button and his helmet when he had it.  I also filed a sample feeding schedule here when he was tube fed, and would probably recommend for infants or children with varied/different feeding procedures.

That pretty much sums it all up!  I recommend creating separate binders with this information for any person who cares for your child on a regular basis (daycare, grandparents).    I added links below for printables and downloads of all the medical sheets I described above.  I have both a PDF fillable file (unfortunately you can’t save it filled in unless you have Adobe Pro) and printable Word documents.  I also included an excel file for the feeding schedule. The only one not included is the excel file for a medical history.  If you'd like this one, please email me and I can send you the format and I'll say some extra prayers for patience for you while you create it =).

Medical Notebook Sheets - MS Word Files - Download Here
Choose this link if you would like to take the basic sheets to print and fill out by hand or to edit them to save as a Word document.  The formatting may appear different initially in Google Docs viewer, but if you click (upper right) to download the file, it returns to normal when you re-open it in Word.

Medical Notebook Sheets - PDF Files - Download Here
Choose this option if you want a fillable form to fill out and print from your computer.  You will need to download the file in order for the "fillable" feature to come up.  You won't be able to save typed data unless you have Adobe Pro.  

For another resource, I adapted numerous forms for my binder from this site:

This is a great site and very in-depth for other medical information and condition-specific forms.

If you have any problems with the downloads or files, please contact me and I can send the originals to you.


  1. You are so AWESOME!!! I have been wanting to do this for Greyson for so long. We never leave him over night but we have just recently started going out for an evening here and there so I would feel so much better if I had one of these I know I would feel so much better. Thanks for posting these templates!!

  2. Great post Tara! I need to do this, so now that you've gathered all the stuff, I guess I have to get one put together for Max...LOL! I put your post about Liam on my blog today. Thanks for your input once again!

  3. Tara - this is awesome! Ethan is starting preschool in the fall, so now I have a summer project :) Thanks, friend!

  4. Wow, Tara! You are super organized. We should probably have something like this too, but it scares me to think how long it would take to get it done! Thanks for sharing and we probably have a project to do now too!