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. 

Just a quickie, to cheer you up after yesterday.

Lucy climbed the stairs today.

YOU GUYS.  SHE CLIMBED THE STAIRS TODAY.

I mean, I had to sit behind her and hold her butt and also throw her blankie up three stairs at a time but she did it.  And you know what the best part is?

She decided to do it. 

My kid is awesome. 

Ugh, that look.

I know a lot of moms get it.  Probably every mother of a child with special needs.  Especially the moms of kids who have special needs that aren't immediately obvious.  I mean, look, if Lucy had to carry around an oxygen tank people would know how to arrange their faces, but she looks completely normal except for one teeny-tiny thing.

She's teeny-tiny. 

And I mean really teeny-tiny.  She is 18 months old and mostly wears 12-month-old clothes.  She can shock a granny in the grocery store with how well she talks -- because nobody expects a 1-year-old to say "turtle" and "Charlie" and "biscuit."  Well-meaning assistants in our favorite toy store suggest toys she's waaay to advanced for.  And when, inevitably, a stranger comes up to me and says, "Oh, she's adorable! How old is she?" I have to admit, I do sometimes think about lying.

But I don't.  I tell the truth.  I tell them that she is 18 months old.  And then I get that look. 

They nearly always look shocked.  And then they try to cover it up.  Some of them start talking about something else. 

Some of them tell me that it's okay, that they knew a kid who suddenly GREW.  Like I asked, or intimated that I was worried.  Asshats. 

Some of them just find a way to walk away.  And tsk as soon as they think I'm out of earshot.  I HEAR YOU OLD LADIES!!!!

I figured out today that I'm carrying around a lot of anger and resentment because of all of this judgment.  I mean, I thought I had been shrugging it all off, because I can't expect everybody to just KNOW.  And it really takes 3-4 sentences to get to it:  "Lucy has intractible epilepsy.  It doesn't respond to most medications, so she has to take a medication that has an unfortunate side effect -- anorexia.  No, there really isn't anything else.  Yes, we are monitoring her weight and growth with a doctor."

But today broke me down.  We took Lucy in for her 18-month checkup.  As she is now too long for her 12-month pants, I diaper-pinned 18-month pants to her. 

The nurse came in and introduced herself and said, "So we're seeing Miss Lucy for her 15-month checkup, right?"

And I said, "No, 18 month."

And she looked at Lucy.  And then SHE GAVE ME THAT LOOK.

I know she didn't mean to.  She recovered fast.  I held it together until she left. 

But I was pretty upset, and it is awful to have this kind of judgment rain down on me.  As though I'm in some way trying to hurt my kid.  As though I did something to hurt her on purpose, or by neglecting her, or simply because I'm not smart enough to know. 

MINUTES LIKE HOURS YOU GUYS!!!!!

I'm going nuts.

Seriously.

I wait every day for the freakin'mail-woman, and then she has the nerve to only bring me a catalog and a pizza flyer!!!!!

BRING ME MY TEST RESULTS DAGGONE IT!!!

In the meantime, I am working my way through the EDCD Waiver.  And the Medicaid application.  The application is 18 pages long. 

My college applications weren't that long. 

Just one more month?

So, we got swabbed yesterday. 

And apparently, because they're only checking for the exact mutation that Lulu has, we'll have results in a month.  Wow. 

And, of course, like all other people who like to pretend to know what it's like to live my life without never actually lived it, the genetic counselor actually told us to make an emergency plan.

LIKE I DON'T HAVE ONE.  PLEASE. 

Also, as I do EVERY MOTHERLOVING TIME a person in a lab coat (or, in this case, in close proximity to a person in a lab coat) I pointed out that I can't tell an emergency room doctor what to do. 

Or, rather, that I can try, but they will never, ever, ever, ever (you picking this up, Taylor Swift?) listen to me.

So, they promised to write a letter that I can carry with me that explains what drugs not to use on Lulu.  It's better, but I'm not convinced that this is awesome because it's an EMERGENCY.  Who has time to read a letter? 

So, anyway, that has inspired me to start a series on this blog called "emergency preparedness" for the parents of twitchy kids. 

Yes, I know the four of you who read this blog don't have twitchy kids.  But one day, I hope that some mom who is just at her wit's end will stumble across me and find a little sanity and humor in the great land of epilepsy management. 

Also, some possible bad news/good news/good news?  I think Lucy had a seizure today.

That's the bad news.  The good news?  That I'm not sure.  See, normally, Lucy's seizures are like being in labor (if you think you're in labor, you are not in labor.  You will KNOW when you are in labor.  So will everybody in a -mile radius.  But I digress.)  But today, she stilled (tonic) and then her left leg began a rhythmic movement, just for about 7 seconds (partial focal seizure?)  and then (good news again) IT STOPPED ON ITS OWN.  Which is awesome.  Lucy's seizures, like, never do that. 

Mom In Motion Study

So, people have been asking me how *I* have been doing.  And I'm fine, really, but I tell them I'm a little bored because I suspect that's what they want to hear.

Mostly I'm not terribly bored.  I mean, this isn't as intellectually stimulating as trying to get 26 adults to identify a thesis statement when they have no idea either what a thesis statement is or what it does despite their insistence that they have advanced high school diplomas, but I'm not horribly bored.  I've been able to write more, which is kind of awesome, and I'm getting a lot of good stuff done for Lulu, which is super-awesome.

Also, I've been able to clean out three closets. 

But since people wonder what I *do* all day, I thought I'd write it down.  Apparently, they think I simply wipe bottom, drool, and then sing ABCs.  It's close, but not quite. 

And so, I present to you, with only a little more ado, a Mom in Motion Study. 

To get you in the mood, you probably need to listen to this:



My day begins between 5 and 5:30am.  I wake up after some crazy-ass dream (last night, I dreamed we were living in a townhouse with a teeny-tiny yard, and we bought a horse) and check for breathing. 
   Me:  Check
   T:  Check.
   Lulu . . . . . . . . . come on kid, give me something . . . . . . . . . .  . . . . .Lulu? . . . . . Ok, Check.

Then I carefully get out of bed and head for the bathroom in the hall.  Then coffee.  And then?

IT'S MOMMY'S FREE TIME EVERYBODY'S ASLEEP HOORAY!!!!!!!!!!!!!!

 

Some mornings (in fact, many mornings) MFTEAH doesn't happen.  Some mornings Lulu wakes up before I can even get out of bed, so we go right to:

 

EVERYBODY IN THE BIG BED SNUGGLE TIME AWESOME HAPPY.

 

This will last until I get kicked in the face, or someone looks at the clock and realizes that if both adults wish to be washed and dressed this morning that we need to get up, or my bladder is about to give out. 

 

Then we get up and I get Lucy her morning beverage and pull her hair into her ponytail in case she decides to fight the medicine and we commence the medicine taking.  Daddy is normally in charge of this, because she fights him less, and I am not going to take away a job he is clearly better at than me. 

 

And then I bathe and dress and dry my hair and then we switch and I try to entertain a toddler while making the beds and dressing her.  Then we attempt breakfast, though we're rarely successful, especially after we've just shoved 3 teaspoons of anti-epileptics into her.  And then Daddy goes to work, and we cry, and then it's time to try to watch the weather forecast and get a nebulizer treatment. 

 

You should probably picture an adult woman trying to herd kittens into a sack with one hand.  It's a little like that. 

 

And then we commence to working on our homework.  Lulu needs to learn to:

   1.  Stack

   2.  Scribble

   3.  Walk up the stairs

 

These are hard things.  The stacking is coming along nicely -- we're up to three blocks.  We like to make some dots on the paper and then try to gnaw on our crayon and we ARE SO MAD when Mommy takes them away. 

 

The stairs are HARD, you guys.  There is this shit called gravity and it is a bitch.  Lucy can make it up a step, but a lot of times she can then fall off of said step.  She never gets hurt (it's really just surprise) but she gets really scared.  However, it's good for her, because she needs to understand that there's a certain amount of danger and risk in going up the stairs.  I just hope I'm not creating too fearful a kid. 

 

Anyway, then it's 9:00 and it is naptime.  So we lay down and I get the computer and I check my work email and my regular email and then I get to write. 

 

Dudes, I have been so prolific in the past two months.  I write a humor column for an online magazine, and I wrote two in addition to all of my blogging.  And I started a book, but then again who isn't writing a book?  But anyway, I get some stuff DONE. And I also do the laundry and prep dinner and race around doing, well, stuff during naptime. 

 

Then she wakes up.  Back to homework. 

 

11:30am.  Lunch!  Throw raisins on the floor!  Throw cheese on the floor!  Throw crackers on the floor!  Eat some carrots! 

 

12noon:  While Mommy is cleaning up, eat raisins, cheese, and crackers off the floor.

 

12:05:  Daddy give Lucy her afternoon meds.  Tears. 

 

12:15.  Sesame Street is brought to you by the Letter C, the number 8, and some the highest people EVER.  I'm waiting for a segment called "Puff, Puff, Pass."

 

1:15:  Naptime.  Back to writing, emailing, blogging, hemming pants, cleaning out a closet, etc. 

 

2:00:  Tell Lucy that she has not had enough nap.  Nice try.

 

3:30:  Shit.  Is she ever going to wake up?

 

3:45:  Hi, Baby!  Let's play!

 

4:30:  Daddy comes home!  Time to make dinner.

 

5:00:  Dinner!  Throw raisins on the floor!  Throw crackers on the floor!  Eat some beans!  Chew up a roll and spit it in Mommy's hand! 

 

5:30:  Fussy time.  Tired again.  Daddy reads books.  Mommy tries to figure out what to defrost for tomorrow's dinner. 

 

6:00pm:  All the books go ON THE FLOOR. 

6:10:  Lucy wants to read Humpty Dumpty.  WHERE IS HUMPTY DUMPTY?

6:12:  Lucy is sitting on Humpty Dumpty.  I attempt to explain how she can't read the book that is under her bottom.  Fail.  Tears.  I pull her into my lap for soothing and rescue the damn book. 

6:20:  We read Humpty Dumpty.

6:21:  And again.

6:22:  And again.

6:23:  And again.

6:24:  And again.

6:25:  I put Humpty down and tell Lucy to find another book.  She chooses Little Pookie.

6:26: We read Little Pookie.

6:27: And again.

6:28: And again.

6:29: And again.

6:30: And again.

We repeat with other books until 7:00.  Then we take meds and a bath and go snuggle in front of Jeopardy with some milk. 

8:00pm:  Brush teeth, bedtime.  Also baby's bedtime.  Yaaaaaawn. 

8:30:  TV.  I normally watch about half of a show and then fall asleep, which leads to some wonky dreams. . . . .

Hope is the thing with feathers, right Emily?

Because right now, there are feathers EVERYWHERE.

And I am afraid of feathers. I might, might, MIGHT get to go back to work.

See, today, we met again with the folks from the local government who are going to offer services to Lucy.  They brought in a coordinator, a registered nurse, a physical therapist, and an occupational therapist.  A lot of people looked at Lucy.  The news was what we expected -- some good, some bad.  Her actual chronological age is 17.5 months. 

Social and emotional:  21 months.  Very good.
Verbal:  24 months.  EXCELLENT.
Gross motor:  16 months.  This was actually surprising, because we thought she was more delayed than that. 
Fine motor:  14 months.  Disappointing.  We thought she was not quite so delayed here. 

The physical therapist helped us understand some things about Lucy in regards to the delay, which I'll explain in a moment -- but for those of you with kids, or considering kids, I really recommend any book by Dr. Sears.  He has a philosophy of trying to get behind your kid's eyes, which can really help you understand your child.  Why does Lucy fight sleeping alone in a crib?  It's scary when I walk away -- she's never been alone in her life, EVER.  It's so much better if she can see another human being. 

That being said, Travis and I don't really understand what it's like to be in her body.  In addition to the seizures, Lucy has a condition called hypotonia.  Essentially, her muscles and ligaments are extremely loose and flexible, which doesn;t sound necessarily bad, but she can't always control them, which is bad.  This isn't a muscle thing, which we could counter with exercises, but a brain-to-body thing.  When she was first learning to walk, she would pull up and take a step and then just Bambi out. 

The PT explained that kids with hypotonia learn not to trust their bodies.  They don't trust that the messages they get will be accurate, and they don't trust that their bodies will be there for them.  Understanding this really helped me understand a lot about Lucy -- why she doesn't want to use a fork -- because she doesn't trust that she'll be able to.  That she doesn't want to stack blocks, because it's really frustrating -- but she'll stack anything with a hole on it on her wooden ring-stack toy.  She knows she's supposed to do these things, and part of her wants to, but mostly she's either afraid to or she's given up.  I'm so sad about this, but at least we know what to work on now. 

Lucy's homework: 

1. Stack blocks.

2.  Scribble with crayon.

3.  Try to walk up the stairs.

BUT, while talking with the service coordinator today, I discovered that for some reason, Lucy is eligible for medicaid.  (Just Lucy.  Not us.)  Which means that she might then be eligible for home health services.  Which might mean that the person who comes to take care of her everyday might be an LPN.

Which might mean that I get to go back to work.

I KNOW.  I'm so happy I'm sharing happyfuntimes with all of you.