Wednesday, August 1, 2012

Trevy’s mommy & daddy’s tips for surviving an overnight EEG with your kiddo



I don’t typically write advice posts.  I suppose that’s because I consider myself more learner…less teacher.  Or maybe it’s just that know-it-all types drive me wonky?  At any rate, after surviving yet another inpatient EEG my hubby and I thought it’d be akin to sin not to share some things we’ve learned over the past five years.  This is in no way an exhaustive list.  Nor do I claim to be an expert.  It’s just my list.  And I happen to love a little guy with severe epilepsy.  Which means, we’ve been around the inpatient EEG block.


(he does rock the outfit, though!)


Be Prepared to Wait

Unless you’re one of those people who should totally play the lotto because things just always fall your way…you can expect to wait.  On the front and back ends of your hospital admission.  We have had the joy of visiting three rather large children’s hospitals (in three different states, no less) and one thing we’ve learned is that admissions are, as a general rule, a pain in the boot.  Gotta love bureaucracy.  It never fails, no matter how many months in advance we’ve booked our overnight EEG…no matter how many reminder notices we’ve received in the mail…when we arrive at in admissions everyone seems shocked that we actually showed.  We have waited upwards of five hours for a “bed to open”.  The only thing that’s worse than waiting for a bed…is waiting to escape it!  The discharge process is a form of cruel and unusual punishment!  When the doctor (usually it’s the attending neuro) gives you the go-home green light (usually during early morning rounds) you’re giddy with joy!  Oh the sweet smell of freedom!  You’re mentally having yourself eating a relaxing brunch on your own couch.  Taking a long, stress detoxing shower and getting in your jammies before noon.  But no one else seems to be in much of a hurry to let you out and it’s absolute torture, I tell you.  I’ve tried it all too.  Begging, pleading, befriending nurses, firm I mean business conversations.  But at the end of the day, bureaucracy moves like molasses.  And if you’re a control freak like me, it’ll save you so much stress if you just go prepared to wait.


Hooking Up = UnHappy Camper
and Staying Hooked Up Ain’t Any Better


If you’re coming in for an overnight EEG chances are your child has already been hooked up before.  And you know the drill.  For those who might be first timers here is a great social story that shows you (and your child) what to expect.  Keep in mind, I see everything through the filter of life with Trevy.  His first EEG was at 7 months old and he’s had at least one each year from that first until his most recent, at 5 years old.  I thought it would get easier.  Yeah, for us, not so much.  Trevy is developmentally between 3-4 years, so he is more able to be comforted with words and cuddles through the actual hooking up.  It’s the realizing that it’s not coming off any time soon that turns him into Donnie from The Wild Thornberrys! 




Don’t be embarrassed if your child rips everything off and you have to call the techs to schlep back and re-wire him.  Because now you’re friends with at least one other parent who’s done it too!  Oh, and two words for ya – chin strap!


As much as I gripe about our local hospital, at least they have someone to monitor him through the night so we can sleep.  We’ve been to other hospitals which require a guardian to stay awake ALL NIGHT LONG.  You’ll have to flip a coin or arm wrestle to figure out who wins that honor!  Actually, I usually take the day shift (so Jonathan can go to work) and we swap for night duty.  I married a good man!


Press that Button

After you’re all hooked up and settled in your room (some places will hook up the EEG in a different area – some right in your room) it’s time to monitor those seizures.  There will be a camera, which should be on your child at all times.  You may have to control the camera yourself, which is easier because it allows your child more room to move.  If you have a wiggle worm like Trevy – you’ll appreciate the freedom controlling that silly thing gives you!  Some hospitals have staff at the controls and require your child to stay in a designated area so that they are always center stage.  There will be a cord with a handle with a little button to push any time you see “an event”.  Do not be afraid to push that button!  Any and every thing that makes you worry is a reason to push the button.  It’s so so so important to push that button!  The button helps the neuros (or epileptologists) read the EEG data by marking a few minutes before and a few minutes after you pushed it.  The easier it is to read the EEG – the sooner you get to go home!  And the sooner your heart can digest whatever information comes from the report.  Also, do you really wanna do this all again?  I didn’t think so…so…PRESS THAT BUTTON!

Been There Done That Hint:  Most of those cameras also record audio, so if you’re gonna (and trust me, you will) have a blow out with your spouse I suggest doing so in whispers or code! Winking smile
 

Bring Your Own Meds

Seriously.  If your child takes seizure meds bring them with you!  Some of the most stressful moments during inpatient stays have been over meds.  It boggles my mind how doctors can be so flippant about seizure medication but we have literally given Trevor’s 7pm dose as late as 11pm because the doctors couldn’t seem to get the orders in.  After a crazy-mommy melt down moment…we decided to start bringing our own.  Not only is it fun to see the surprised/confused expressions of the nursing staff (because it’s against the rules for us to have a clue) it’s also SO much more peaceful to administer meds on time.


Make Yourself at Home

You’re gonna be there for at least 24 hours (possibly longer) so you might as well feel comfy!  Ask the nurses to show you where to find clean bedding, pillows, towels etc.  Not only will you enjoy feeling more independent, they’ll appreciate not having to run to your room every time you need a washcloth.

Our local hospital has a Ronald McDonald House room which provides coffee and snacks for parents staying in the hospital.  A coffee cart comes by in the mornings too.  Ask the staff about what your hospital might offer.

If your child is out of a crib and in a big kid bed be sure to ask for padded siding.  Not only will it make the bed more comfy cozy…it will also cover up the bed control buttons!  Out of sight – out of mind!


Pack Favorite Snacks

Hospital food isn’t always groady…but when you’re craving an oreo, you’re craving an oreo.


Distract-ify

See above – because yummy snacks are a great distraction.  But some other things that have helped us navigate the hoooooooours of being trapped in a cell hospital room:

1-comfy trevy

  • Child Life – many (if not all) children’s hospitals have Child Life programs which exist to help make your child’s stay more comfy by providing toys, books, coloring pages, movies, video games and sometimes even super cool things like Music or Animal Therapies!  Use them!  In fact, ask for them to visit as soon as you meet your nurse! 
  • iPad/Pods/Phones (you get the idea) – load it up with new apps (I post freebie apps here and have a list of our faves here).   Some of our can’t live withouts are: Netflix, Pandora, FaceTime and YouTube.  I love our iGizmos because they’re small and easy to pack which means I don’t have to bring everything, plus the kitchen sink with me!  
  • Comfy Faves – I know he’s five and I should totally be weaning the binky more aggressively…but during an inpatient EEG it’s all about making him feel safe and comfy!  I packed an arsenal of binks and blankies and his Crush stuffy too.  Whatever things comfort your little one…be sure to bring them. 
  • Visitors – if you have friends/family in the area ask them to visit!  I even asked if Trevy’s home-based therapy could be done at the hospital and guess what?  They said yes!
  • Virtual Visitors – FaceTime is SO wonderful!  Trevy was able to see and chat with his brother, sister and Grams on our iPod!  Bristel was amazing too…she put on a little puppet show, sang songs with him and really helped pass precious time!   


Prepare Yourself for the
Hospital Hangover

If at all possible, try to take (at least) the day following your discharge off to re-coop.  Even if nothing super dramatic happens during your stay – there is just something emotionally, physically, spiritually draining about spending the night in a children’s hospital.  And it will hit you (and your whole family) like a ton of bricks!  You’ll feel like you’re slogging through mud for days afterwards.  My hubby and I affectionately refer to it as the Hospital Hangover!  Be ready for it and plan to spend a day or so decompressing in front of the tube all day in your jammies!


**********

Like I said in the beginning, this is in no way an exhaustive list of ideas…it’s just our list.  Filtered through our life with Trevy and his epilepsy.  If you have an overnight EEG in the works…hopefully some of these tips will help make it more bearable for your family!


Best!


…danielle


10 comments:

teamaidan said...

This is awesome. Yes, the hospital hangover is spot on and sort of unexpected I think.

Ok, the fighting in code is hilarious. I want the tape. Also beware that if you break down with emotion thinking you're in the privacy of the room, the EEG tech might come to comfort you if she's awesome like that.

And one more thing - the unexpected PTSD. If this is a return to the hospital for the first time, don't be surprised if all sorts of crazy hard feelings hit you out of seemingly nowhere.

Thanks for sharing!

happy's mommy said...

We always fight in Swahili! And you're right about the PTSD. The funny thing is...Trevy's last admission was for mono and he was so so SO sick. Those memories made me all sappy just on the way TO the hospital. Never mind walking the halls...

...danielle

Mrs. M said...

Fighting in Swahili!!!!!
Awesome!
Your list is bang on.
Trevy looks all cosy with his blanky, bin lie, & IPAD. Love how he's fingering his blanky.

happy's mommy said...

The trouble with the blanky is that he can't use it without the binky! Oops...

...d

Neurotic Iraqi Mom said...

Love it love it love it. I'm laughing so much because oh my goodness you hit it right on the nail! Every single point. I loved the hangover and the utter release punishment loooool. So true...you are lucky though you can actually sleep where I'm at the nurses are not plugged on the video so I have to sit and watch him the whole time unless ofcourse I go up in his crib and lay next to him. Oh yes I do allll the time. Thank god I don't weigh much :)

Keep us posted on the good news! Can't wait to hear it. Trevy is truly a cutie pie. Bless him...

blogzilly said...

Maybe you should write these more often. It was fantastic. Maybe we all should frankly. We have much experience to put forth and you did it very well.

happy's mommy said...

Dr. Chugani's set up requires a parent to stay up ALL NIGHT! We were SO dreading it...but fortunately, the time we were there, Trevy had SO MANY seizures they told us to go to sleep!

Kenly...tag, you're it - for the next "advice" post. :)

...danielle

blogzilly said...

I wouldn't know what to write one on!

Kristen said...

This will be our fourth, 2nd at Children's Boston and the first one at Children's Boston did not require us to stay awake. She had that many seizures too. My husband thinks he is going to go home (to Maine) and come back in the morning. Um, NO!! He did that the first time, but this time we have our own room because it is scheduled. (Please tell me we get a bed) I ended up sleeping in her crib with her in Boston because the chair sleeper was so uncomfortable. 48 hours of being in prison.(at least) Do they have a helmet they can put over the electrodes that locks? I can not see Keira keeping these on at this stage of her development in any way, shape or form. Can't wait!! Sept 25-27(sarcasm)
Thanks for the tips.
-Kristen

charity said...

i wish i would have found this before my daughter went in for a 24 hour eeg last week. but now i know what to bring for the next time