Special Needs Record Keeping
Parents of medically complex children handle reams of paperwork- that which we review, sign, and much of it we are given to retain for our records. It’s all part of our secret part-time job. My rule of thumb for filing vs recycling is that if it can easily be found on the internet or in books I own (ie vaccination info, first aid, general parenting advice), if it’s an easily accessible record such as on the hospital’s online patient record portal, if it’s legal form letters (hippa, liability, institution policies) or if it’s not likely to ever be an essential reference (dme packing lists), then I recycle them. This rule usually eliminates any information that isn’t especially helpful and specifically about June. This has helped me pare down significantly the files I retain, but it still leaves quite a bit. After not quite three years of using this system, these are the records I’ve retained- the “short” stack on the left is medical bill records, and tall stack of files is the actual pared-down medical data on June, and the spirals are my own notes from doctor visits and hospital stays.
I found that June’s records alone were taking up a whole file cabinet drawer. When I sat down to write a “concise” review of her medical history for a genetics consultation, I had to admit that at this point and volume of data, I needed to further organize it in order to make it useful.
Previously, I saved the medical bills in folders by year, which works well for the annual schedule of our flex spending, health savings, and taxes etc. But I kept all of the medical data in one folder (and then a second and then a third) filed chronologically, rather than splitting it all up by institution, year or subject. The reason for this bulk file approach, besides not having toddler-free time to work on filing systems, is that for a good portion of June’s early life, every service, specialty, and institution was delivered inpatient. If I were to break it up- would a dermatology consult while inpatient go in the hospital file or a specialist file? Would g-button instructions from the hospital go in a hospital folder or in a surgical info folder? Would g-button instructions from the DME company go along with those hospital g button instructions (wherever those end up) or with the DME file, or with the hospital file since we received them while inpatient? On and on and on. So I just put everything into one file chronologically until that system became ridiculous, which is now.
I picked a hybrid organizational system for this data including a general medical data files separated by year- data which I further thinned- and specific files for organizations when they have enough paperwork to warrant it. So the tower of paperwork has been distributed among:
-4 files of general Medical info: 2013, 2014, etc which includes anything not in the folders below; this tends to include timeline-relevant info on June’s health including pcp, specialists and inpatient
-Speciality pharmacy for Synegis
-Speciality pharmacy for Lovonox
-3 files, one for each nursing agency we’ve had the misfortune of utilizing
-My notes spirals
-Surgery photos, pictured below. This includes her two trach placements, g-button surgery, larygotracheal reconstruction, a lot of bronchoscopies and various minor sedated checks and OR procedures, with each procedure netting between one and three of these surgery photo pages.
The files are all manageable and easily referenced. I think this system will serve us well for a while, which is good given that it took me a year to finally sit down and cross this off of my to-do list. And the motivation for it- writing the “concise” review of June’s medical history- was well worth the effort. Doctors are using to try to draw connections between her varied symptoms and history to see if a genetic syndrome might be present, despite no clear diagnosis from the exome sequencing. But just as valuable to me is the fact that I have a copy of it in her medical bag and can quicky give any new professional a concise but thorough history of her so they can have a complete clinical picture.