April 9th was a terrible, horrible, no good very bad day for Josiah. It was a pretty awful day for me too. It was a day I hope to never repeat. Ever! This will serve as my reminder.
Once a year Josiah goes to the hospital for sedation dentistry. Due to behavioral challenges, anesthesia is the only way he can have his teeth cleaned.
I was told it would take 14 minutes, once he was in the operating room, to get the job done. We were there for 8.5 hours.
It started out okay. Josiah even walked into the hospital on his own, refusing the adaptive stroller we usually rely on just to get him inside a medical facility. Surprisingly, he also did really well in pre-op, waiting patiently until it was his turn. As I snapped these pictures I wondered if he had any idea what was about to go down.
My guess is no. Look at his joy!
We prepared him as best we could. Days before we told him about the process and explained what to expect. He’s had sedation dentistry for the past few years. Nothing about this experience is foreign to him. But, there’s always a fine line between sharing all the minute details vs glossing over them. How much is too much? How much might cause unnecessary anxiety?
Josiah usually has a Xanax just before we leave home, prior to any surgical procedures. That morning we opted to give him 2, just in case. He refused. So seeing how calm and contented he seemed in the pre-op was very reassuring. I was convinced this would be a slam dunk.
I couldn’t have been more wrong.
Josiah has experienced many procedures requiring sedation over the years. They were easier when he was little. Not so much now that he’s 24 and has incredible, superhuman strength.
His amazing caregiver and I have prayed, planned and researched ideal ways to make these situations better for everyone involved. We have it down to a science now. It’s an entire process involving Xanax, when he’ll take it, an adaptive stroller, 3 gait belts — one with multiple heavy-duty handles all the way around it — an iPad for calming music, seizure pads along the side rails of the recovery room bed, wrist and ankle restraints, and an extended stay in the recovery room, usually upwards of 2 hours.
Days before, I send a detailed, full-page, single-spaced typed letter containing important notes regarding best practices for supporting Josiah during sedation and surgical procedures. I do this every time. It includes 3 sections: Pre-Surgery Preparation, Sedation and Transport, Recovery and Post-Anesthesia Care. These protocols have consistently proven to be the most effective in ensuring Josiah’s safety, comfort, and cooperation.
It has taken many years and lots of trial and error to figure this all out.
His amazing caregiver and I are confident in our system. We anticipate smooth sailing most of the time. However, we have noticed the last 3-4 times Josiah came out of anesthesia he was very much like a fish in a frying pan, flipping, flopping and flailing all over the bed. Most of the time while his eyes are still closed. He’s not even fully awake and his body just jerks and twitches almost uncontrollably. He even attempts to stand on the bed and nearly throws himself to the floor. It takes a minimum of 3 adults to help him stay safely in the bed until he’s calm enough to go home.
When Josiah was wheeled into recovery this time, there were no seizure pads, no wrist or ankle restraints. The sweet nurse assigned to him said he did great, smiled and added, “You can take him home in about 15 minutes.”
Bless her heart!
Not long after, Josiah began his fish-in-a-frying-pan frenzy. His “Saint of an Angel” caregiver and I were by his side to help him calm. We did our best to talk soothingly to him, to reassure him. We knew it would only be a matter of time before he would pull his IV out given the chance.
And then the frenzy became more furious. A nurse rushed in to help. Josiah surged with such strength we literally had to lay across him to contain him in the bed. He thrust his head through the bed rails and I couldn’t get it out at first. His arms and legs were intermittently jutting through the rails as well. Someone quickly ran in with the seizure pads and restraints and then removed his IV.
In situations like this, I tend to default to humor. I crack little jokes to lighten the mood, but if I’m honest, I believe I need this diversion to keep from falling apart.
I’m here to tell you there is NOTHING as traumatic as watching your full grown adult child fight so fiercely to free himself from what looks for all intents and purposes like abuse. Held down against his will, mustering all of his strength to force these people off of him, all to no avail. It’s unbelievably heartbreaking!
At one point Josiah kicked his amazing caregiver in the face. Unintentionally of course. He also clocked her in the eye. I told her to leave the room and go sit somewhere safe.
Those of us in it from the beginning were sweaty and tired. There were no signs of the situation improving. As Josiah became more wakeful, the battle became more intense. After an hour and a half of the fight, a call went out for more help. Three strong men joined in as we wrestled with Josiah. One of them rushed out to get some medication. He was unaware the IV had already been removed. When he returned with an IV medication that obviously was not going to work, he left the room, muttering under his breath. He was back in a few minutes with the same medication to administer through Josiah’s nose.
I asked how long before it would calm him and was stunned with his response, “It’s going to take quite a while.”
Another of the male nurses suggested putting in a new IV. There were SEVEN of us holding Josiah down at this point. The first IV attempt failed. The second one took but not without Josiah vehemently protesting while I fought back tears.
I had no idea how much longer we could endure this nightmare when suddenly Josiah’s body instantly went limp. He went from full force fight mode to eerily still.
“What happened?” I asked, shocked at the extreme transformation.
“It’s the meds we put in his IV.” Then quickly someone called out for a pulse ox and an oxygen mask. Others unlocked the bed, quickly wheeling him past me. “You can wait in the waiting room. We’ll let you know when he’s back in recovery.”
I had no idea where they were taking him. A nurse mentioned the PACU and said I’d be notified shortly.
An hour and a half later we were called.
When we saw Josiah next he was unconscious, surrounded by 2 nurses and 2 anesthesiologists. There was an oxygen mask on his face, electrodes all over his chest to monitor his heart rate and way too many vials of medication on the tray table at the foot of his bed.
Dr. Werner, a quick-witted and very funny anesthesiologist, explained he had given Josiah something to help him come out of anesthesia calmly. Apparently, he had been called to the unit because the usual protocol wasn’t working.
Dr. Werner has a nonspeaking neurodivergent son. He studied at Columbia University in New York. He talked of an extensive research study that had been done while he was there on the reaction of medication on neurodivergent individuals. He explained that neurodivergent patients, including people with autism or ADHD, sometimes respond to medication differently than neurotypical patients do. They may experience more side effects, unexpected reactions, or even paradoxical responses to medications that are typically effective for others.
In the PACU (Post Anesthesia Care Unit), Josiah kept getting more of the same anesthesia that caused the problem in the first place. What they were doing was not working for him. Dr. Werner told me, had he not intervened, Josiah most likely would have been admitted for observation.
He assured me, however, that with the medication he had administered, Josiah would wake slowly and calmly. There would be no more flipping and flopping and flailing about. He was right. Shortly after Josiah started waking more naturally.
Dr. Werner saved the day!
And he made sure everyone within earshot knew it. He rambled on and on about how amazing he is. He called himself a superhero and boasted how EVERYONE in the hospital calls on him to race to the rescue. He had all the nurses laughing, commenting on how funny he always is. Dr. Werner made a challenging, overwhelming, emotionally draining experience immensely better by injecting his humor.
I’m so grateful for Dr. Werner. Truly, his presence was a blessing.
Here are the other blessings in all of this. While under anesthesia, Josiah had:
- his teeth cleaned
- a baby tooth removed
- annual labs drawn
- his ears cleaned
- his incredibly long, “Guinness Book of World Records” toenails trimmed!
Those tasks are impossible to tackle otherwise. And the biggest blessing? Josiah will never remember any of this.
His incredible caregiver and I may spend the next several years recovering from the worst, most excessively long dental cleaning day in recorded history.
But in the end, it was worth every single disturbing, terrifying, traumatic second…
…because Josiah got his toenails trimmed!