Emergency Preparedness, Part 1: Documentation

There are certain things you really need to have with you at all times in an emergency situation.  Among them, a list of medications, the names and phone numbers of your doctors, and your medical insurance information. 

If you are anything like me, you do not have this stuff memorized.

Therefore, I recommend that you prepare it ahead of time and stash copies in 2 places: 
1.  Your purse or wallet or diaper bag, and
2.  Your emergency room bag.  (We'll discuss this bag soon, I promise.  Not that we need to.  You probably already have one.)

But Melly, you are thinking, only TWO?  That's CRAZY.  I need at least 50, so I can stash one in each car and one in the kitchen and one in every single pair of shoes and . . . .

No. 

You need two.  Think logically with me.  You are going to update this document every time you see a doctor.  Every.  Single.  Time.  That means you are going to have to track down every copy and replace it.  And God forbid you end up in an emergency with an old one. 

You need two.  Because you will always either have your purse wallet or diaper bag OR the ER bag.  Trust me. 

But before we get to this, let's talk about your insurance cards. 

I recommend you do this, because it has been the biggest help in the world:  get thee to a scanner and scan that thing, front and back, and save it to your computer.  Now you can print a copy every time you need to go to a doctor.  I've been able to email it.  It's super-handy.  Then, make yourself a copy for the emergency room bag, just in case.  You don't want to end up in the hospital without your insurance information.  I always print our names and "please return" on the copy in red pen, because a lot of times we emd up at a different hospital from the one where we begin. 

Next, your emergency medical information: 
This is a personal document, so I'm going to talk about what needs to be on it, and then give you some pointers about what we put on Lucy's, though I'm not going to post the actual document.  Essentially, this needs to be quick and dirty. 

I keep this to one page, printed on the front.  I think it only needs to be information that is absolutely necessary in an emergency situation, and I try to imagine a situation in which I don't get to answer any questions and can only pin this page to Lucy before the doctors take her away.  What must they know so they can treat her properly?  Keep in mind, they'll only have time to skim, so your information needs to be bullets, and user-friendly to the doctors.  Try to pay attention (it's hard, I know) to the questions that the doctors ask most often so you can anticipate the information they need and in what order.

So what, specifically is on our document?  The following, in order -- although it is formatted out much like a resume. 
* Title (Emergency Medical Information)
*The date the document was last updated.
* Lucy's full name
* Lucy's date of birth.
* One sentence identifying Lucy's diagnosis. 
* One sentence identifying her unusual drug reaction to a common emergency anti-epileptic.
* Her neurologist's advice for doctors unsure about how to handle status epilepticus. 
* Her weight at last checkup.  I give this in pounds and also convert it to kilograms, and I recommend you do the same -- don't make the doctors and nurses waste time finding a calculator and doing a conversion. 
* Her list of current medications in the following format:
BRAND NAME(generic name) 00mg/mL sol 0x daily
* Information about her immunizations.  In Lucy's case, it's one sentence indicating that her immunizations are up to date. 
* Names and contact information for her pediatrician and neurologist.
* Our names, address, and contact information. 
* Brief information about Dravet Syndrome disorders, as most doctors in Emergency Departments haven't encountered them.  I yanked this mostly from dravet.org, and added a Lucy-specific sentence:

Quick info about Dravet: 
Dravet Spectrum Disorders describe a group of related epilepsies having a similar genetic cause, most commonly mutations in the SCN1A gene which encodes a sodium ion channel, NaV1.1, found in the brain. The Dravet Spectrum Disorders include the following syndromes, listed from least severe to most severe:  Familial Febrile Seizures (FS); Generalized Epilepsy with Febrile Seizures Plus (GEFS+) Intractable Childhood Epilepsy with Generalized Tonic Clonic Seizures (ICE-GTC); Severe Infantile Multifocal Epilepsy (SIMFE); Severe Myoclonic Epilepsy Borderline (SMEB); Severe Myoclonic Epilepsy of Infancy (SMEI); also called Dravet Syndrome.  These syndromes encompass not only epilepsy, but also often intellectual and developmental delays along with comorbid conditions.  Lucy’s doctors have not given a definitive diagnosis as to her specific syndrome yet – they are waiting to see how she develops.  If you need more information, please go to dravet.org.

Okay.  You've probably now figured out why you'll be updating this so often.  Every time there's a meds change, or your kid gains an ounce, this document gets trashed. 

So I keep one in a folder in Lucy's diaper bag with a pen, so I can mark changes to make when I get home (it's with me in a doctor's office, natch.) and 6-8 copies in a folder in the emergency bag, along with a copy of our insurance card. 

Why so many? 

A lot of times, we get about 4 doctors and nurses asking questions and shouting instructions to the point person, or doctor who is actually working on Lucy.  These people keep walking in and out of the room, and I've observed that the best way to handle things is to pass these documents out like I'm wearing a hot dog costume. 

Anyways, I hope this helps.  Good luck with preparing for your own emergency.  I'm so sorry you had to do this.