why Carrie the CNA is here, since there's that medication issue. And we are waiting on a nurse.
I might be getting her in trouble with this post.
But fear not. Carrie isn't her real name.
I will not post the name of the agency she works for. But, when we went over emergency procedures, I assured her that in the event of a seizure that required rescue diazapam, both Travis and I would assume that Lucy administered it herself, if she and Carrie were the only ones here.
I've also assured the agency that same thing.
And we all gave each other the look over Lucy's sweet little head, which is to say that nobody's going to stand by and watch the toddler seize and do nothing.
Okay. So, we were okayed for the EDCD waiver, and then we got Medicaid funding, and then while I was having a happy little phone chat with a person I discovered that their CNAs are prohibited from giving medication.
To quote her: "We can remind a patient, but we cannot administer."
This isn't great, especially since the patient may be convulsing and might need rescue diazapam. In her butt.
Yesterday was Purple Day, and I was overwhelmed by the love. Before I get into the negativity, and while I'm on the love, I can tell there are some new readers (because I'm obsessive and check my stats a lot) and you should know you're welcome. You should also know that you're welcome to comment. A lot of my friends have been making it a habit to email their comments to me, probably because of that post about not telling anyone on Facebook yet. But as you'll see, I should be out pretty soon -- people at work already know about Lucy's diagnosis, for the most part. Anyway, when I revamped this blog and decided that I'd start writing about Dravet, I opened up the comment section so that pretty much anyone could comment on the blog. I felt (and still kind of feel) alone out here, and if that's you too, come on and have a virtual cup of coffee. Comments are always welcome and appreciated. Unless, of course, all you want to do is swear at me.
Of course, there was a lot of love, anyway. The Supreme Court is finally hearing the marriage equality cases, and so there was love, love, love all over facebook. It was red and purple everywhere I looked.
Unfortunately, I kept having a bad feeling about March 26. I had decided to make it a day of celebration, simply because I decided that bad feelings, unless you are my psychic sister, are hooey.
So I started my Facebook Advocacy posts (those were fun) and got our purple outfits, and a cake, and Travis and I had a special lunch and talked about how our special kid made us a special family -- stronger, wiser, and tougher.
We did not, however, mention that it also made us more anxiety-driven and obssessive-compulsive. But you only have to look at my "Doomsday Preppers" posts to know that.
Anyway, the bad feeling didn't go away. I fully expected to finally get our remaining genetics tests and finally come "out" on Facebook. As it is bad either way, I felt like it would explain my feeling (de novo mutation = worse for Lucy; inherited mutation = better for Lucy, one of us has some guilt.) However, they didn't come.
But then, last night, we were all in her room. Travis and I were both cuddled on the big beanbag, and we were reading to Lucy. She was sitting on the floor, looking at us, and then she did it -- the same kind of posturing we saw this time last year. It is what we read about here (scroll down to myoclonic seizures) and it is hella scary for us because we actually cannot say it was anything else. We were both looking at her straight on. She wasn't doing anything else, and it just pulled her into a totally unnatural position and squished her little face all up.
It pisses me off to no end, because the doctors at the Hospital We Try Not To Go To But Sometimes End Up At In An Emergency Because It's Closer discounted these a year ago and then told me she didn't have epilepsy and tried to start weaning her off all of her antiepileptic drugs and then caused a REALLY BIG SCARY SEIZURE because she was, obviously, on far too low a dose of her AED. It's really hard to get these on video because they happen so super-fast. If you blink, they're over.
This, of course, is coming on top of the super-scary events of Monday: I had to go to a doctor's appointment at 4:00. Travis had to work until 4:30 (he works at home, so he is literally right down a flight of stairs). I wiggled Lucy's naps back and got her to sleep at 3:30, so I knew she'd be asleep until at least 4:30. I'm a hero.
I take Travis the baby monitor. I go to the doctor.
I return from the doctor at 5. Lucy is still asleep. She wakes up as Travis and I come up the stairs. We hear one cry, and then it appears she goes back to sleep.
When we go to get her from the crib (bedtime is between 7 and 8, so we don't need her to sleep too much past 5) she is markedly postictal. Speech is slurred. Eyes at half-mast. She's in a fetal position, and doesn't want to come out of it. Is disoriented. Can't sit up. Her feet and hands are purplish.
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:
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.
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.
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. . . . .
Melly is a writer, a teacher, a wife, and a mother (though some of her students would insist that is only half of the word) living in Virginia. She has described her experiences as a mother as “Ernest Has a Baby.” She likes twinkies, shoes, reading books, and Chuck Norris jokes. A devoted couch potato, she has taken to online shopping like a frog to hopping, using it to fill dull spots during bad reality tv and shows in which “people wear weird costumes and talk funny” (this is her husband’s appraisal of shows and movies she will like). Despite having joined the Twilight bandwagon incredibly late, she is staunchly Team Jacob. She used to be funny, and then her life turned into an episode of House, MD. Her life is absurd. You can read about it here.
