Based on events from last week

We found out a month ago Thorin has ear issues that have contributed to him going from mild bilateral hearing loss to moderate. I’m not entirely convinced that is accurate because he can hear me sneaking candy from a room away and if Ward and I whisper he comes running.

The doctor determined– one ear tube has something growing behind it  and in the other ear his ear drum was torn when the tube came out. He ordered a CT scan.

Thorin had previously had two scans. One after a car accident and one after a sledding accident. Yes, we are horrible parents.

At the first attempt to have the scan performed Thorin refused immediately upon entering the room. Even though– earlier in the day– he and I had watched YouTube videos of children having scans. The sympathetic narrators told us CT scans were really like going in a large donut that doesn’t touch you or hurt you.

The technicians tried piling him with stickers. I offered a dinner out including what he calls, Big Orange Juice– or juice with sugar. As he squished himself into the corner of the room– bringing to mind The Blair Witch Project– Ward and I realized this was not going to happen. We did however take him out to dinner and he did have Big Orange Juice.

The next attempt included Thorin taking a small amount of liquid Valium– prescribed by the doctor– before the procedure. I assured him it would help him relax. What it did instead is make him less inhibited. He said things like, “I hate big, dumb donut!”, “You’re a big jerk, Mommy!” and to one of the technicians, “Ugly outfit!”

The third attempt was to have Thorin go under anesthesia. Both Ward and I wished there was another way. My sister, Betty, helped give perspective. As a child Betty had cancer and was treated for several years before she went into remission. She said, “Good for him to say what he wants. I wished I could have done that as a kid. But, I don’t think anyone would have listened. Having things done to you is scary.”

Ward was out of town so I took Thorin to the hospital alone. The nurse who greeted us was amazing. Everything was: “Thorin, I’m so glad to meet you!”, “Thorin, let’s get a movie going. You come pick it out.” and “Thorin do you like cars?” He was not an object.

Enter the nurse who would insert the IV. When she walked into the small bay the room temperature dropped about 30 degrees. She had his chart, so she knew his name– still she asked, “What’s your name?”

Thorin was silent.

“Oh, no name? I guess I’ll call you ‘What’s-Your-Name’. How’s that?”

“How about I kick you in your lady parts?” I wanted to offer.

It went quickly down hill from there. She said, “I have magic sauce for your wrists and arms.”

Thorin looked alarmed.

I suggested instead the truth, “Thorin, the medicine will numb your arms so you don’t feel the needle. You won’t feel pain.”

He nodded.

All that was for nought because when she inserted the needle she didn’t hit a vein. So of course she tried again. Thorin was hysterically screaming and crying. Through the window I could see staff at the circular desk outside the room — looks of concern were apparent.

“We are behind now because of this (the object being Thorin). The CT scan takes seconds!” she said, not attending to his obvious pain and fear.

“Okay, this is not working. We need to figure this out.”, I said while trying to calm Thorin. I also noted I was saying over and over again to Thorin, “I’m sorry.”

Brief aside: Seeing your child fearful and hysterical is awful. You would give anything to change places with them. You also wish legally you could get away with a quick throat punch to ignorant health care professionals.

The Naughty Nurse*– as we later referred to her as– quickly left not to be seen again. The anesthesiologist soon entered the room. He told Thorin, “You’re scared. Of course, you are. Anyone would be. Let’s slow this down.”

And he did. It was another 40 minutes before they tried inserting the IV. It went fine. In fact everything after that was fine including the results. It’s just a little skin growing behind the ear tube– nothing malignant. The doctor will re-check everything in three months.

On the way home Thorin said, “Dark, black blood.”

“That’s what you saw?”

“Yes, dark, black blood.”

“Oh, no! I’m sorry, Thorin.”

“Dark, black blood.”

The rest of the day was spent on the couch bed in the den watching movies and being happily catered to by me.

Yesterday, Thorin dictated a story to me:

It’s a stormy night.

There’s dark, black blood on my bed. Monsters tip-toe in my room.

And, they see me, a zombie. giant spider

My mom screamed loud!

Dev whined: “AHHHHHHHHHHHHH!”

Smudge screamed like a creaking door.

I said, “Welcome to the haunted house.”

A giant spider, drinking my mom’s blood.

I laughed: “HAHHHHHHHHH!”

Smudge starts eating an eye ball.

Dev says, “Yummy! Yummy! I want one!”

I laughed, “HEE! HEE! HEE! Ho! Ho! Ho!”

The church bells rang.

Bongggg! Bongggg! Bongggg!

*Betty offered the name Naughty Nurse. It’s term she had used as a child for nurses who didn’t see her back then as a child, fearful and in pain.

 

 

This entry was posted in Down syndrome by Kari Wagner-Peck. Bookmark the permalink.

About Kari Wagner-Peck

Kari Wagner-Peck lives with her husband and son in Maine. She is a writer & storyteller who home schools with her son. She is the author of the memoir Not Always Happy: An Unusual Parenting Journey, May, 2017, Central Recovery Press. She has been published at The New York Times Well Family blog, The Huffington Post, The The Good Men Project, The Sydney Morning Herald Daily Life blog, BLOOM and Love That Max among others. Author page: kariwagnerpeck.com Twitter @KariWagnerPeck and Facebook: www.facebook.com/NotAlwaysHappyLive/ Email: kariwagnerpeck@gmail.com

4 thoughts on “Based on events from last week

  1. Ha Kerry, my heart feels for you and Thorin.
    Sharif also had hearing issues, and like you and Walt, we marvelled that he could hear the word “chocolate” if it was whispered behind him. His speech, which had been very clear and comprehensible, deteriorated slowly and progressively. His teachers were concerned. The paediatric audiologist he was under could not get anywhere with the testing, she would bend down to fiddle with the controls on her machine and he would slap her bottom – he was 16 or 17 then in his James Bond phase – and she would giggle nervously, which was the only encouragement he needed. She was never able to establish officially whether he did have a hearing loss, and could not suggest anything so he became progressively deafer and more socially isolated. Movies, which he had always loved, lost their appeal. We didn’t know what to do.
    Then when he turned 18, he was moved to adult services, and the audiologist there had a different approach. She decided to start from the premice that he had a hearing loss and gave him hearing aids. The transformation was immediate. He would put his “ears” on first thing in the morning and would not go anywhere without them. He became again the happy person that he had been…it was quite extraordinary. He was happy to cooperate with tests as he knew she was the lady who had given him his “ears” and we were in regular contact until he died as he was due to collect a new set of hearing aids that month.
    I am glad not all the professionals mentioned in your story were bad and hope Thorin never has to see “naughty nurse” again, even in a bad dream.

    • Isabelle– thank you for writing. Maybe I am in denial about Thorin’s hearing. I can’t tell if he is guessing during the exam to please or confused by what is expected. Or he has hearing loss. They did bring up a hearing aid. Thank you! K.

  2. Oh Kari, I am so sorry you had a “naughty nurse”…I have had some myself!!!! I wish the medical profession could be more patient instead of always the almighty dollar..get um in and get um out.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s