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VNS Surgery Update… 5 days after surgery

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 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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11 People Replies to “VNS Surgery Update… 5 days after surgery”

  1. I would love to hear how your son is doing? Are you glad you got the surgury?

  2. Anonymous

    I am another one who has a non-verbal child. He had six extractions (including wisdoms) in the hospital under general this year. We were very worried, but he was eating pizza by dinner and the hospital itself ( a smaller one that we had never used before) was very attuned to him. Earlier ear surgeries proved to be more stressful than this one; always that uncertainty. I hope your son's recovery speeds up and he has good response to the device. Again, I empathize with you. Our son's lack of speech has driven every decision that we make and has ruled out a lot of educational options because we can't the chance with him.

  3. Anonymous

    I know exactly how you feel about the nonverbal and recovering from surgery.. Hang in there every kiddo is different 🙂 there was 2 weeks where our son only drank juice and didn't eat due to the flu:( but he eventually starting eating:) drove me nuts..nothing drs could do if he was still drinking… Hope he gets back to himself soon:)

  4. My friend's son had a colonoscopy with dilation and his seizures, esp petit mal, increased tremendously for several days after. You've got thousands of people with positive thoughts going out for you all.

  5. Anonymous

    Took a week for our boy to recover after dental surgery under anesthesia. I was told anesthesia and autism often do not mix well. It got better but really hard at time. Good luck.

  6. Wen

    I am so sorry you all are going through this. And yes, nonverbal Autism sucks so much. When my guy is well he can say some words, but when he is not perfectly healthy, he can't talk at all, and regresses in all areas. He has never been able to answer questions. We never know how he is feeling. It sucks. I hope you get some answers soon.

  7. Anonymous

    It's good to listen to your gut instincts. Watch him carefully and check in with your doc(s) tomorrow unless something gets worse tonight. You will be okay. Don't dismiss something just because someone suggests you should. The heavy meds from surgery are probably wearing off so he may be reacting to that. Anyway, stay strong. You can do this!

  8. I wish that I did not understand what you mean about the non-verbal thing. While my daughter is verbal sometimes, when she's ill or just in a mood – she won't talk or can't.
    We kept her home sick with what we thought was a cold. She slept a lot. When we went to the dr. they said she had really low oxygen and we ended up in the hospital for 4 days.
    it's sooooooo hard to tell when it's serious with our kids.
    My love and hugs go out to you and your family.

  9. it is strange even though i don't know you i follow your life on here and fb. i almost feel like you guys are a part of my family lol. that being said…non-verbal autism sucks as if you didn't already know that, heck partially verbal autism still sucks. if we ask our son who has about 150 words if he is happy or sad, he will always without fail say he is sad, even when he is laughing…my sister has epilepsy although it is controlled by 750 of depakote as a kid she had a few grand malls and tons of petit mall. my ma had it too while she was alive. i watch my son constantly for seizures. autism is exhausting. my son has moderate classic. epilepsy is exhausting. anyway, i know how you feel about God based on your previous posts so will keep you in prayers and thinking good thoughts for all of you.

  10. Anonymous

    Sending good thoughts your way!