Tuesday, April 24, 2018

Jaycee Gets a CT Scan...Finally

A 15 minute test took hours and hours of our lives last week, and it almost didn't happen.

Jaycee's pulmonary doctor wanted an updated CT scan, since her last one was 5 years ago. The doctor asked me if Jaycee would be able to tolerate a CT scan of her chest. I'm glad she asked for my opinion, because simple things aren't always simple.

Jaycee has Down syndrome. She's minimally verbal. She has had many, many hospital admissions, and this causes her great fear and anxiety with most tests and procedures. It took 3 of us to hold her down for a flu shot last fall, for example.

"If it just takes a few minutes, she'll be fine. I think she can do it," I told the doctor with assurance.

I meant what I said. But then came the paper from the insurance company. The document gave the preapproval numbers for the CT scan with contrast.

With contrast? Wait, what?

Yep, I googled it. Google told me that an IV type poke would be necessary to deliver the dye.

That changed everything. Bloodwork, shots, and IVs are all terrible experiences for Jaycee. She gets scared and moves, which makes more people have to hold her down. It's a vicious cycle that has kept going for years.

I had reservations about the scan, but I figured we'd get through it.

To prepare Jaycee for the test, I used a technique called video priming or video modeling. The technique basically involves having the child watch movies about a specific topic in order to prepare the child for a new experience and teach the child appropriate behaviors during that new experience. (Yay for my speech-language pathology degree!)

On Monday, we watched a few YouTube videos showing children getting CT scans. I sat next to her and narrated what was happening using words I wanted her to remember. ("The girl is getting pictures. She is with her daddy. She is happy. The pictures don't hurt. She's not crying. She's done. She is going home.")

On Tuesday, we watched more YouTube videos with me narrating again. By this time, Jaycee was signing back, "Me. Doctor. Pictures." I showed one video of a person getting an IV for the contrast CT scan. She didn't like that. She whined when she saw the IV part even though it was brief. That was a bad sign. Still, I pointed out that the boy in the video wasn't crying.

On Wednesday, I did more of a mix of contrast and non-contrast videos. She still whined and did a fake cry when she saw the brief IV part. I tried to remind her that no one was hurt or crying.

Thursday was the big day. "Me, pictures," she signed as we headed to the hospital. She was prepared! We made the 3.5 hour trip to the hospital. When we arrived, Jaycee was calm and happy. Sometimes, she starts getting anxious as soon as we arrive in the parking lot and refuses to get out of the van. She got out and walked inside smiling. She was actually fine up until the nurse asked her to lay down to get the IV inserted. The nurse put on gloves, and Jaycee was done. She saw the tray of IV insertion supplies, and she wanted no part of it.

The next 10-15 minutes were spent trying to get Jaycee to hold still so they could find a vein. One person looked with no confidence. Another person looked and couldn't find a vein either. (This is the story of her life.) Finally, a third person emerged who thought they found a vein worth trying to stick. Jaycee was ready for this fight and began to wiggle and squirm to keep the stick from happening. There were only 2 nurses trying to do the stick. The last few times she needed an IV in the hospital it has taken 4 or more people to hold all the limbs that frail around. The nurses were all patient, kind, and compassionate. But, they weren't going to get the IV in this way.

They finally decided Jaycee just wasn't going to be able to handle the contrast part of the test. They warned that the contrast dye will make her feel like her chest is burning and the sensation that she's wetting herself but she isn't.

They asked, "Do you think she can lay still for the scan while she feels those things?"


They listened as I explained how I felt that I had adequately prepared Jaycee for a scan without an IV. I could tell they were unsure if she would be able to be calm enough to do a regular CT scan. Still, they decided to call the doctor and get permission to do the scan without the contrast. Then the waiting began.

At this point, I wanted to cry. I didn't want to come back and do this quick test under sedation. That seemed a little overboard. I also didn't want to go home without doing anything. I didn't want the 7 hours of driving to be for nothing!

About 2.5 hours after our appointment was suppose to begin, we got word that we could do a regular CT. We were called back into a different room. Jaycee sat right down and followed all the directions as she signed "pictures." They fastened a big Velcro seat belt around her waist, but she never tried to get up. My mom held one of her hands above her head while I held the other one.

She did awesome! She was calm and happy. There was no fear in her eyes. Success!!

Jaycee celebrating that she was finished!

A simple test is never simple! I wonder how many health professionals know what some parents go through to get these things done. I'm just glad Jaycee's doctor allowed her to do the regular scan that didn't create so much anxiety and problems for her. In the end, everything worked out. I'm glad that we all worked together as a team and got her test completed.

And that my friends is how a 15 minute test can turn into a 3 hour test! 

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