Hand to Hold's Official Blog: Written by Parents for Parents

Organization 101 for the Medically Complex Child

With a medically complex child, organization is key.

Truth be told, I have always been very organized. A useful skill after my son Caleb was born with VACTERL association as it helped us to better navigate his seemingly endless specialist visits, therapy, hospitalizations, surgeries, medications, and insurance.

Practical Organization Tips

  • Write everything down.  I have a notebook where I keep track of any interaction I have had for Caleb’s medical care.  Tip: Remember to write down the name and contact number for anyone you speak with should you need to refer back to it (especially important when having conversations with insurance, nurses or suppliers).  This is a great place to jot notes, questions you may have, and tips or recommendations you may receive.
  • Create a notebook.  Make a binder that has a section for demographics (patient name, date of birth, address, contact information, and a copy of their insurance information), medical information by specialty (clinic and follow-up visit notes), lab results, radiology reports, hospitalizations by date (hospitalization summary, history and physical, any operative or procedural notes, lab and radiology reports, discharge summary), therapy (plan of treatment, notes and discharge), and suppliers (account and contact information for your pharmacy, home health agency, medical supplies company along with item numbers, etc.).  This was affectionately nicknamed Caleb’s “baby book” and it saved us time after time.
  • Make a cheat sheet.  We have a multi-page synopsis of Caleb’s medical history including his full name, date of birth, allergies, medications (with strength, dosage and frequency), prenatal  and birth history, diagnoses (current and resolved), dates of last lab draws, dates of radiology tests by type, surgeries,  hospitalizations, and vaccination status.  We have a one page demographic form with his patient name, date of birth, address, contact information, parent/guardian information, emergency contact information, insured’s demographics (name, date of birth, social security number, work, work address and phone number) and a copy of his insurance card.  Our third cheat sheet is one that lists his specialists and therapists, their address and contact information, along with pharmacy and suppliers.  There often is not enough room on forms for all his information and in an emergency all that information flies out the window.  It is nice to be able to hand it all over in a concise form.  Marty Barnes has links to templates in her article Seeing Another Specialist?  Reduce Your Paperwork.
  • Back up important information.  After working hard to get all that information together, you do not want to lose it!  Back up the cheat sheet information stored on your computer or use an online document server like Google Docs to create and store them.  We scanned all of Caleb’s medical records while making copies and have them on a jump drive.  Using an online document or storage service also makes it accessible to other caregivers (if you give them permission) and allows you to access the information remotely, should you have left the notebook at home.  If you have digital copies of images on CD, make copies before you give them out.
  • Keep a calendar.  This I did not know the importance of until recently.  Yes, I did have a calendar for Caleb’s appointments and would include important pre-visit information as nothing to eat after 4 a.m., etc.  What I also suggest you track is mileage, receipts of any medication or equipment you purchased, parking garage receipts, co-pays or amounts paid at a visit, and notes about when to schedule a future appointment if you do not make the follow-up appointment at that time.  When it comes time to do your taxes, medical costs can add up (including travel costs and medical items paid for out-of-pocket).  You want to have an accurate record to have a shot at being able to deduct medical expenses from your taxes.  We travel out-of-state for medical care and track the cost of the flight, rental car, hotel, meals, etc.
  • Get it in writing or digital image.  We make it a habit to request records on our way out of an appointment or after a hospital stay.  Many hospitals and clinics will charge a fee for medical records, but if the records are going directly to another medical professional the records are free due to continuing care.  I put down our pediatrician’s information as he is the hub of our medical team and tracks all of Caleb’s medical care.  Bonus is he lets me make copies for my notebook for free.  If you have had radiology testing done, many doctors want to read the images themselves and not rely solely on the radiology report.  You can ask to have those images burned on a CD.  Read the records too to check that the information you were given matches what is in the report or have your pediatrician check for you.
  • Your phone is your friend.  If you have a smart phone with a wireless data plan, you can access and track much of this on your phone.  I use Google Calendar for Caleb’s calendar and it is shared with my husband so he can see upcoming appointments.  Our pharmacy has an app I use to order medications and I use email to track medical supply receipts and packages.  Many clinics now offer text appointment reminders.  I also have all of our medical team’s contact information in my contacts so I can call any time I have a question or concern.
  • Kathryn Whitaker has tips on staying organized with insurance/finances in her article on Navigating Claims, EOBs and Insurance Companies.

What other organizational tips and tricks do you use?

Bea Smith About Bea Smith

As a nurse, Bea Smith (TX) found the roles reversed when her son was born with a congenital condition, imperforate anus (IA); he had no anus. He had surgery at two days old, spent a week in the NICU and has had three more surgeries to create an anus and to correct his spine. Diagnosed with VACTERL, an association of conditions, he also has kidney/bladder problems and had a tethered spinal cord. Bea is the mother of two daughters in addition to her son. She is adjusting to her role as a rookie special needs mom, balancing family, friends and work with a little humor and a lot of faith, chronicling it all on Caring Bridge.

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