10 Tips To Survive a Hospital Visit w/ a Severely Autistic Kid
July 1, 2014
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Now Reading: 10 Tips To Survive a Hospital Visit w/ a Severely Autistic Kid
July 1, 2014
One was overnight EEG to get a look at his seizure activity.
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.
|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|
|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 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).
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 byFrank 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” :-).
10 People Replies to “10 Tips To Survive a Hospital Visit w/ a Severely Autistic Kid”
I have autism and I love hospitals. I like to play with crutches and watch the EKG.
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!
I love the way you & wifey work together! (sure wish I had that kind of support!)
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. 🙂
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
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?
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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.
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!
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!!!