VNS Surgery Update… 5 days after surgery
August 25, 2013
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August 25, 2013
This nonverbal thing is really hard sometimes. My son not being able to tell me how he feels really sucks…
Today is Sunday at 5:55pm. The king had the vns surgery on Tuesday morning.
And just like with his hernia surgery in Sept 2012 he had us fooled.
This time he was fine in the hospital, fine the next day. Thursday & Friday he was a bit extra sleepy and mushy. And yesterday (Saturday) he pretty much slept the entire day. And when he was up he was kinda wobbly and unsteady when he walked.
As usual I freaked out and started googling stuff and as usual the wife was concerned, but calm.
WIFE: “He just had surgery. He’s only 10 years old. Everybody recovers differently. Think about how many days my dad was out of commission from that small procedure that time…”
We called the surgeon and he didn’t sound too concerned. Didn’t have any answers for us either, he said — “anesthesia & morphine from the surgery should be out of his system by now. so I doubt it’s that…”
But again he didn’t sound too concerned. Not like “go to the ER now” concerned but more like “come see me on Monday if you want” concerned.
Then yesterday evening he vomited a little.
After that he seemed a lot better, but still tired.
We called our pediatrician as well to run everything by him and again he didn’t sound too concerned either. “How’s his color? Any fever? How’s his mood?”
All great. Good color, no fever, great/happy mood when he is awake…
“Come see me Monday if you’re still concerned”
So we let him sleep in our bed last night so we could watch him closely.
Today has been more of the same. He’s a bit more awake. And a bit more “with it” but his balance is still off.
And all this isn’t too far off from where Kyle was before the surgery…
The week before when we were on vacation he was sleeping a lot and a bit zombie like when awake because of his anti-seizure meds…but we made a med adjustment midweek that week which woke him up a bit…but brought on a few more small seizures…a trade off we accepted.
Maybe he’s just back to the meds making him sleepy, wobbly, etc
Or maybe with the trauma of the surgery he could be having more seizures…maybe the ones that are hard to see the “silent seizures”.
That could explain some of this. He sometimes sleeps a lot after a seizure cluster.
This is why they don’t turn the vns device on for weeks so you can separate what’s complications from the surgery VS. issues with the device.
But with Kyle it’s so hard because there’s no normal. All summer he hasn’t had a baseline of normal. We’ve been tweaking meds all summer. He’d have a week with a lot of bad (complex partial) seizures in his sleep so we started a new med to try & combat that. We’d go up slowly on that med and he’d be napping in school. Then when he was too zombie like we started going down on that med.
Anyway he seems a bit better this evening and I need to stop googling things and watching him like a hawk.
The wife actually kicked me out this afternoon, told me to go see a movie. I went to see the new comedy “The World’s End”.
Great movie which took my mind off of all of this crap for exactly 1 hour and 49 minutes. And then I got back in the car, got that pit in my stomach, and texted the wife to get the update.
And I got Breaking Bad & Dexter which will take my mind away for 2 hours tonight.
Anyway, that’s my quick update.
And as usual, all the family is checking in asking how Kyle’s doing and are shocked when we tell them the truth that he’s still kinda off 5 days removed from “minor surgery”
And I can tell by the sound in their voices that they are thinking that when it’s turned on that this vns device is gonna be some miracle and take all of Kyle’s seizures away.
And I don’t want to be Debbie Downer, but i want to bring their expectations down and tell them it’s probably gonna take a while and it’s only significantly successfully in half the people that get it.
Anyway I’m rambling. The main takeaway here is that the king had vns surgery on Tuesday and still isn’t completely back to himself (whatever that means) on Sunday at 6:36pm which is longer than I expected…
The other takeaway here is as usual the wife is the calm one, the voice of reason (“do you want to bring him to the ER right now? then there’s nothing we can do now so while he’s napping I’m gonna cook why don’t you clean out the garage”)
The last takeaway?
This nonverbal thing is really hard. My son not being able to tell me how he feels really sucks.
Can’t wait to go to work tomorrow to get my head out of this for 8 hours… 🙂
…unless we end up back at a dr’s office… 🙁
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” :-).