A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Saturday, February 20, 2016

Our MRI exprience letter

So I am a letter writer.
After our experience with the MRI, it kept gnawing at me and so I thought I would write a letter. Not to get anyone in any trouble, but just to raise awareness of our experience to potentially make some changes for next time.
Writing it made me feel better. I'm not sure if I'll actually send it or not.

To whom it may concern,
I wanted to write to you in regards to my sons experience with a recent MRI.
My son was born with spina bifida and hydrocephalus and we have had a lot of positive experiences with Sick Kids. He has had a number of sedated MRIs over the last 6 years, but I felt that this year he was ready to try his spine and brain MRI without any anesthetic.

When we got the phone call with the information for the MRI I explained that this was our first attempt at an awake MRI and if there were any resources. I was told that there wasn’t really any way to prepare, but I could look up youtube videos. It surprised me that there wasn’t anything specific to Sick Kids, as we found the Sick Kids surgery video very helpful.
To prepare my son we watched a couple of different youtube videos, but he really wanted to know what it was going to be like at his hospital. The night before his MRI we found the MRE Tour at SickKids on youtube, which talked about the MRI and it helped to settle some of his fears.

We arrived early and settled in for an expected long wait, as we were booked towards the end of the day. I was surprised, and had forgotten, that your 2 bathrooms in the MRI department are not easily accessible (by button) for wheelchair access. So my son needed help getting in and out of the bathroom.

But the purpose of this letter is to explain our experience with the MRI and how I learned a couple of hard lessons to properly advocate for my son. When we got to the MRI room and we were getting my son settled he was very nervous, but had his brave face on. They gave him the movie eye glasses, but the ear muffs wouldn’t fit in the head cage. So they gave him foam ear plugs instead. Then they told me I could sit in the rocking chair, about 10 ft away from the machine and gave me earmuffs. I had thought I had to sit so far away because of something to do with the test.

I took the direction of the MRI tech, as I haven’t been in an MRI with my son before (but I had one when I was pregnant). I sat and read an old magazine for about 45 minutes. Towards the end I could hear a noise, which I thought was the machine. Eventually they stopped the MRI and pulled him out when they were having difficulty with a picture. That is when I realized that the noise I had been hearing was my son sobbing.
After we calmed him, and removed some of the blankets around him, he was willing to try again. This time I was told I could stand with him and touch him and try to keep him calm. Unfortunately after about 15 minutes he wasn’t able to keep still for the final series of pictures. They offered us another machine where the earmuffs would fit in the head cage, and we went back to the waiting room.

When we got to the next machine, the foam ear plugs and ear muffs with the movie playing in them were given to him, with the eye goggles. I was again asked and able to stand with him and be with him through the next 15 minutes as they got the last set of pictures they needed without difficulty. No tears.
When it was all done he said that the last test didn’t make his head hurt, and he enjoyed and was distracted by the movie.

I wanted the opportunity to share our experience. As a parent in a new environment I took the direction of the MRI techs to determine what I should and should not do, and what to expect. It was incredibly heartbreaking to know that I had been so close to my son who needed me and I didn’t even know. As they felt that foam ear plugs were enough sound blockage for a 6 year old with shunted hydrocephalus, I didn’t question it as I should have. If the MRI tech directed me to a chair in the room instead of allowing me to touch and reassure my child, I didn’t question it, as I should have. I took the direction of the healthcare professionals who do this every day.
I really feel that Sick Kids is an incredible hospital, but this particular experience did not meet our expectations.

Thank you for allowing me the opportunity to share our experience.
Amanda Ridding, and my son Nickolas

*Update* I was contacted by Family Relations at Sick Kids who thanked me for the feedback and recognized that it was a difficult experience for us. The message discussed the importance of family centred care at Sick Kids and that the feedback will be forwarded to the MRI manager.

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