A week ago yesterday Trevor was wheeled into the OR for the first time since his hemispherectomy.
Talk about PTSD.
That’s whole ‘nother post. Except to say that the nurse who patronizingly patted my shoulder and told me to “hold it together, mom” just about got an imprint of my wedding ring on her kisser. I was definitely slugging her in my head.
Trevor was NOT a fan of the whole idea. We’ve talked to him about his brain surgery because he’s seen pictures and we could tell he was curious. We have always been open with our children. Maybe we’re too open? Anyway…Trevor over heard that he was having surgery and needed comforting that it wasn’t on his brain again. We assured him it wasn’t.
Still, he adamantly perseverated, “no surgery on my nipples!” He meant tonsils.
Sometimes I *heart* Speech Delay-isms.
Dr. Neuro has mentioned a tonsil & adenoidectomy for years now. She felt it could help with his chronic fatigue, possibly reduce seizures and ADHD symptoms.
After finding little to no relief from 3 various ADHD meds plus all the med drama we’ve been through these past two years…I finally decided we should explore the idea. He does snore wicked loud. He is chronically tired. And Lord knows…his ADHD often has me at the end of my wits!
So we scheduled a sleep study.
That was pretty much a colossal waste of time. The test was inconclusive because Trevor and sleeping outside of his own bed don’t mix. However, everyone still felt like this was a good choice for him. Everyone was willing to move forward. Everyone except me. I couldn’t stand the thought of putting him through another surgery for a whim. A maybe. I couldn’t stand the thought of putting my own emotions through the drama of surgery again…on a whim! If the study results had been positive it would have helped my heart accept the decision. The inconclusiveness of it did little to give me a sense of peace.
So I deleted the phone message to schedule an appointment with Dr. ENT.
In the meantime, Trevor was due for a Speech evaluation. I took him to a highly praised SLP. She’d seen him once before. Back when we were exploring communication devices. I liked her then. I like her still.
Her notes from that past appointment had him diagnosed as Non-Verbal. She was thrilled to see the progress he’s made.
She felt the biggest hurdle for him right now is building his vocabulary and helping him with his Dysarthria. She wants to do an intensive oral motor clinic with him this summer.
But I almost fell off the miniature chair I had squeezed into when she asked if I’d ever considered having his adenoids removed.
I had no idea there was a link to sleep apnea and speech delay. Or large adenoids and forward thrusting tongues which inhibit clarity of speech. She took one look at his enormous tonsils and said his adenoids are probably just as huge. Removing them would undoubtedly enhance his speech. She was convinced and therefore convincing.
So there it was. A tangible reason to move forward with the surgery. Not a shot in the dark but something real to hold on to. Which may also have the side benefit of helping take care of those whims too.
I came *this* close to chickening out all the way up to the day of the surgery. I know it’s the second most common surgery for children. However, his last was the LEAST. He’s not the only one with scars from that one. Mine are just on the inside. Also, it seems like nothing with Trevor is ever easy. Or simple. Nothing. Ever. But at least Dr. Anesthesia gave him Versed so that he wouldn’t form scary memories of the hospital!
I have to be honest though…we’re only 8 days post op and it’s been a nightmare. Mommy needs some Versed! The pain is horrific. He couldn’t tolerate the narcotic. I’m sticking anti-nausea & Tylenal glycerin bullets up his rear. I’m force syringing liquids into him so that he doesn’t dehydrate. He’s not eating which we think is causing him to either be in a state of ketosis or the weight loss is elevating his Trileptal to a scary level again. He’s SO off balance that he’s using the walls to support himself when he walks. He’s really sleeping most of the day which would be nice if I didn’t suspect it’s because he’s over-dosing. The neuro is ordering labs for the morning.
I need to write a whole post on the special needs child and tonsillectomy/adenoidectomy!
Obviously the jury is out on whether or not this will benefit him in the long run. But it is one of the steps we’ve taken down the path to LESS drugs.
…danielle
Comments
I can imagine the priods of SHOULDIUV COULDIUV WOULDIUV and all that.
But...hopefully things will work out.
Two things jumped out. Sleep problems. Hmm...Bennett has amazing sleep problems. Doesn't snore though. I had huge tonsils, had them removed a year or two ago. Carter has huge tonsils. I wish that kid would let me look in his mouth.
Two...it is interesting how we hold innocents accountable for indiscretions they unknowingly create based on circumstances we bring forward from the past. You wanted to belt someone because of an innocuous statement said that meant no harm, but because of all the experiences prior she knows nothing about, it caused you to have a very vivid emotional reaction.
That is actually a form of Post Traumatic Stress, in a nutshell, in case anyone was curious. One form of it anyway. Just being in the environment puts you in that state. The hospital personnel intensify it.
A little lesson in physiology and psychology from the good Dr. Lilly. :)
I will say, though, his voice has changed but his speech is already much more clear. AND...he sang a line to a song which was intelligible the whole way through. He normally loses clarity & breath on by the end of a sentence of line. Still not saying it's a win yet. But that has me optimistic.
And thank you, Dr. Lilly. ;)
...danielle
@Ken...thanks. :)
...danielle