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10 Tips To Survive a Hospital Visit w/ a Severely Autistic Kid

Ok, so I’m totally cheating here.  This isn’t a true list, but I know the Internet loves lists.  All my most read blog posts ever are all lists… 10 Things this, and 12 Ways that… So I thought let me try to put my thoughts into list form so I can reach the most amount of eyeballs…
So anyway, if you’ve been reading my Autism Daddy Facebook page recently you’d know that we had 2 hospital visits in the past week for Kyle.  Neither were emergencies.  Both were planned.

One was overnight EEG to get a look at his seizure activity.

And the other was dental work under general anesthesia.

And Kyle did AMAZINGLY well with both visits.  I think it’s a combo of him maturing and the wife and I being experts at what to expect and knowing what to do/bring to make things go as smoothly as possible  So I thought I would write a post to impart some of my wisdom.  🙂  Some of these tips apply to hospital visits with special kids in general, others are more specific to EEG or dental work.

Here are some that made the EEG go extremely smooth.  
1) We brought a TON of stuff with us.  All of Kyle’s favorite books, dvds, stuffed animals, ipad came with us in a HUGE suitcase.

all this for one day in the hospital & we actually used most of it 🙂

Within minutes of checking in to our room at the hospital wifey puts all the books around, props them up on display so it looks like the King’s room.

from a different hospital stay in Aug 2013, but you get the idea

2) We asked for all the forms that we would need to fill out in advance.  And wifey had a length conversation with the EEG scheduling guy telling him all about Kyle and how difficult it can be to get the EEG leads on his head.  And how we’ll need their best EEG tech, and maybe even a 2nd person to assist.  And in the pediatric epilepsy wing in this hospital there was 2 private rooms and 3 double rooms and wifey stressed that a private room would be better for us because if they put us in a double we’d feel bad for the other kid that’ll be stuck in the room with us if Kyle decides to wake up and eat popcorn and watch dvds at 3am.
3) We gave him medicine to sedate him on the drive down to the hospital.  We told the hospital that this is what we were going to do.  We told them that it’s been successful in the past.  We gave him 2 Benadryl (50 mg total) and 1.5mg of melatonin.  (yes i know benadryl is an allergy med, but the active ingredient is diphenhydramine which is the exact same ingredient in most OTC sleep aids, Unisom, etc)
4)  We made sure they did things our way.  Again, this wasn’t our first rodeo with an EEG with Kyle.  We’ve been thru 4-5 of them now.  And gluing the EEG leads on his head is always the hardest part. This is kinda what it looks like…

this is not kyle, but you get the idea

 But we know thru trial & error what kinda works.  So when we get there and Kyle is still awake (the benadryl & melatonin hadn’t kicked in yet) and the nurses & EEG tech want to get started immediately “you’re first on our list” we have to politely tell them no.  

“He needs to be completely asleep before we start.  Then we have to wrap him up in a sheet, the way you swaddle a baby, with his hands constricted, then tape the sheet around him, and then you can get started”
“But you’re first on the schedule.  How long do you think before he’ll be asleep?”
“I have no idea.  Feel free to take another patient or two ahead of us.”
They never, ever hear those words…people giving up their spot, their place in line in a hospital?  Shocking! 
The nurse kept peeking in literally every 5 minutes.  We had to kick her out “he’s not going to fall asleep with you just standing there.”
But what was great was the EEG tech took one patient ahead of us and then quietly she got EVERYTHING ready in advance.  She had her table completely set up and ready to go with 20+ pieces of tape all cut, one for each lead, all her wires untangled, her glue all set up.
And when he was in a deep enough sleep, we wrapped him up like I mentioned and got to work.  
And he did wake up during the swaddling & the gluing on of the leads (which I told them he would), but he was calm enough / groggy enough / zombie enough 😉 from the ben & mel that he didn’t put up much of a fight.  And we got things done relatively quickly.  This was actually the best experience ever for Kyle at putting the leads on, partly because of a good tech and partly because mom & dad made sure they did things our way.  
5) If things didn’t go our way we were prepared to pull the plug at any moment.  Kyle’s first EEG ever, many years back, when they thought her might’ve had a seizure, he cried so hard putting the leads on that he popped vessels on his face & eyes.  We vowed we would never let that happen again.  Now A lot of squirming fine, kicking no problem, he wants to spit on me or bite me I can handle that.  But if the nurses & EEG tech didn’t listen to our requests and things started to get out of hand the wife and I were fully prepared to say “screw this, we’re going home” and let the insurance company & the hospital battle it out…
6) We let him eat & do whatever he wants while hooked up to the EEG.  Once the leads were on he took a 90 minute nap (thanks ben & mel!) and then was himself and was pretty much on his regular sleeping schedule for the rest of the time we were there.  So then for the rest of his awake hours it’s all about trying to keep him busy, keep his hands busy so he wont try to pull the leads or his mummy hat off,

he looks pretty happy considering the circumstances 🙂

and try to keep him on the bed as much as possible.  (it is a video eeg so a camera is pointed at the bed the entire time).

This is when the supplies we brought come in handy.  The king gets whatever he wants while in the hospital.  He can watch tv or videos on the ipad all day long.  He can eat whatever he wants. I think he ate 2 big bags of Lay’s potato chips, 2 bags of popcorn, and thankfully a ton of fruit!

7) During the night, watch the kid in shifts if you can.  While Kyle was sleeping during the night somebody needs to stay awake and watch him because (a) we have to make sure he doesn’t pull off his mummy hat during the night and (b) we have to push a button if we see any suspected seizure activity.  This hospital said in all their paperwork that they would only let one parent stay over night…but we didn’t even ask, we both just stayed.  They gave us a private room 🙂 and wifey and I worked in 3 hour shifts.  One sleeps, the other watches Kyle and surfs the net & FB on their iphone at 3am.  
Those are my tips for how we get thru the experience of a 24 EEG with a severely autistic non-verbal 11 year old.

Now the dental work is a different story.  But since I’ve committed to the list format I’m sticking with it so here goes…

Kyle won’t let us brush his teeth EVER… and never lets the dentist get in there for a look see, forget about a cleaning or xray.  So because of that once every couple of years he needs to go under general anesthesia for a look see, xrays, cleaning, and then fixing whatever they find.  So here’s my few tips when it comes to that…

8) Schedule the earliest appointment possible.  Because with anesthesia you can’t eat after midnight of the day before, and my kid can get hungry in the morning.  Unfortunately because we wanted to schedule this dental work for one of Kyle’s days off from school we had to break our own rule.  Our appointment wasn’t until noon. So…

9) We kept him up til midnight and plowed him with lots of heavy snacks… good ol’ Lay’s Potato Chips again to the rescue.  Then at 11:45am we gave him his melatonin and prayed that he’d sleep a little later than usual and we’d bypass some of the morning hunger this way.  He slept til about 9:45am!  Woo-hoo!  Then in the morning he couldn’t eat or drink anything before he went under

10) One parent should insist on going in to the operating room (yes, they did this in an OR even though it wasn’t an operation) and be with your kid until they go under the anesthesia.  They’ve always offered with us, but I’m not sure if that is standard.  I’d recommend the parent that is physically the strongest but is also mentally strong cuz watching your kid just fall dead sleep in seconds is pretty scary.  I’ve gone in the last few times and went in this time.  They wheeled Kyle in with one of his dolls and one of his Dr Suess books on the gurney.  They put the anesthesia mask over his face (yes, a mask, not an IV every time we’ve done this) and I recited the Dr Suess book from memory and held him down by the shoulders while he took a few breaths and finally went under.

That’s pretty much it.  The dental work included pulling 6 loose baby teeth (his last baby teeth!) and filling 2 cavities.  Pretty minor considering he never brushes his teeth and eats popcorn every day…  🙂

After he was done he slept in the post op hospital recovery area for about an hour with us at his side… and then was up & groggy for about an hour… and then they sent us home…

Anyway there’s my lame list that’s not really a list, but just a bunch of ways that we survive hospital visits with our king.

Hope y’all enjoyed it.

Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

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10 People Replies to “10 Tips To Survive a Hospital Visit w/ a Severely Autistic Kid”

  1. I have autism and I love hospitals. I like to play with crutches and watch the EKG.

  2. Anonymous

    You not brushing and flossing his teeth is medical neglect!!! You are parent. It's your job to brush and floss his teeth after he eats!!! I cannot believe this blog post. I feel very bad for this boy!

  3. phyllisbizeemom

    I love the way you & wifey work together! (sure wish I had that kind of support!)

  4. Anonymous

    AD, if you're intentionally trying to avoid the topic of Kelli and Issy Stapleton (newest article is on People magazine's website — one only has to read the comments to know this is a topic that so many can relate to) please forgive me, and feel free to delete this comment. Just wanting to know your thoughts, though. From perusing your blog entries past to present, you don't seem too wary of controversial topics. 🙂,,20831281,00.html

  5. That is such a helpful list. Thank you for sharing. Trying to schedule kids with autism for medical procedures can be quite difficult to handle. Good thing you have some pretty useful tricks up your sleeve in trying to get Kyle ready for both instances. I really applaud you guys for your patience. All the best! 🙂
    Justene Doan @ A Plus Family Dentistry

  6. My son had his first dental adventure about a month ago. It went well, but we had problems later. His sleep schedule was all effed up and he ended up vomiting from the anesthesia. It was a rocky night. Has this ever happened to you?

  7. Anonymous

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  8. Anonymous

    Mandy (n.z): You guys rock. Go team! We do a bi-annual dental/cardio check (ike has a dodgy aortic valve), and I can only concur with everything you've suggested. We're blessed to have a coordinating nurse at wellington hospital, and she's the bomb! We've been helped by her for about 8yrs worth of checks now, and every time the whole rigmarole just gets less and less of an issue. You do get better at wearing both the parent hat and the advocate hat at the same time. And you do get more practiced at saying "you know what? That's not going to work for us". People pretty soon work out you know what you're talking about.
    thanks AD. Great blog. Hope you guys got all the data you needed.

  9. Love this post ! This is fabulous info although my son is so severe he would never be in a bed or keep the leads on lol He once even ate almost clear through the thick cord during a 5 day EEG , They gave him enough meds to knock out a 240 pound man once and nothing even after being awake all night , (because he as actually been awake 5 days straight once on meds lol) sleep he could completely live without , its actually quite amazing ! This is all fabulous info that I wish I had when he was younger , he's 13 now . Loved this post and how you numbered it!

  10. Anonymous

    Thank you for showing me I'm not alone in this autism battle!! My 12yo son is non verbal autistic. He is the light of my life. I was overjoyed when I came across your Facebook page. You have to have a sense of humor to stay sane!!!