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.

MRI: Aftermath

Nick had his awake MRI yesterday.
He was so brave!

But it was difficult for him. We practiced and watched the videos that I posted. We talked about what we were doing and that it wouldn't hurt. That was Nick's concern, if taking the pictures would hurt.

We got there really early to miss traffic. Our appointment was 545 in the evening, which means that we are more likely to be bumped by all of the emergencies through the day. That was ok, we brought books and toys to distract us.

We saw the waiting room empty and then start filling up again. I asked a couple of times if we could have the gown for Nick to change into, even if it was early. Apparently I asked at shift change and no one passed on the message. When I asked again they said they were delayed (which I completely understood), but I said that I wanted to get Nick ready early because it will take us a long time.
Even so, after we struggled to get in and out of the non-accessible bathroom we had 3 different people try to open the door (why no one knocks anymore, I have no idea).

After a while we were back to waiting. And then it was our turn.
Nick was a little bit nervous going in, but he had his brave-face on.

We used his wheelchair so he had the most mobility until we got to the room. Then I carried him onto the bed. I completed a similar MRI questionnaire before going in with him (for any other moms who read this, one of the things that was on the list was an IUD device, luckily the answer was no... and if you don't know what that is, it means you don't have it).

The MRI tech asked if I had a book (which a did... an e-book, which of course can't come in). His head went into a cage thing to keep it still

They gave him some video glasses to watch a video. But the earmuffs wouldn't fit in the cage so they gave him some earplugs instead (#1 thing I would change)

Then they told me that I could sit in the rocking chair set up a couple feet away. (#2 thing I would change) I got some earmuffs but could still hear the MRI, but not much else. They had 2 fashion magazines that I flipped through while waiting. I have no idea who long it took (probably about 45 minutes) but all I could see was Nicks legs and feet.
Occasionally they would say overhead they just needed a couple more pictures and to try staying still.

I could hear this noise that I thought was part of the MRI, but it ended up being Nick crying. They stopped because Nick was moving too much for one of the pictures and they took him out of the MRI. Nick was sobbing and all red. I was heartbroken.
I sat him up and we uncovered him, and he said he would try again.
I stood right with him and touched his legs and feet so he knew I was there, but I could see how hard he was working to stay still, but he was still heaving and crying. (This was pretty much all I could see ... not my photo)

So we stopped. They said there was another machine we could wait for if we wanted to try again for the last series of pictures. So after about 1 hour at this MRI machine, Nick said he would try again in another machine and we went back to the waiting room.

After about 15 minutes we were ready for the new room. This time I stayed with Nick the whole time, they had Antman on the TV (they were worried it was too old for him, but it was Avengers and he's watched it before). They also made sure they could fit the ear plugs and the earmuffs on.
He was so brave and stayed still the whole time! About 15 minutes of pictures

For being so brave Nick got a game and a blue freezie!
Then we got to change into his new PJs (storm troopers) and we were out of here! It was about 9pm.

 Nick later told me that his head was hurting "so much" because of the noise, and that he forgot that he could say something in the microphone. He says that he doesn't want to do another MRI for a long time, or at least until he's 8.

Some things that I would definitely do differently.
Headphones. He needs the earmuffs, not just the earplugs. If the earmuffs don't fit, we need to problem solve and find a way. It is too painful without the earmuffs.
Stay right with him. That's nice that there is a chair over in the corner, I'm not here to sit in a chair, I can do that in the waiting room. I will stand and touch Nick so he knows that he isn't alone.
Practice using his voice. Practice being loud to say he was scared, or it hurt or he needed a break.
Bring a paperback (because standing/sitting there for 1 hour and not doing anything was really boring... I read all of the articles in the fashion magazine)
Hope that in the next 2 years (which is hopefully the next time we will need an MRI) that Sick Kids will have made their bathrooms in the MRI department accessible (no more struggling with doors)

We see his neurosurgeon in a month to follow up on the results

Awake MRI

Yearly MRI's are not anything new to us. We usually travel down to Sick Kids every 2 years for a sedated MRI.
I think that Nick has had 4 or 5 MRIs (not including the one in utero). He had one just after he was born, I remember them wheeling him down in his bed. I think he had another one in 2010, but I can't actually find the post for that one, so maybe not? Nick had regular MRIs done in 2011, 2012 and 2014. These are all to look at his brain and spine. And we have been (knock on wood) so far, so good.
All of these MRIs involved sedation.
Because Nick was young, and it is important to stay perfectly still while they take pictures, it is standard to use sedation and have the child go to sleep with general anaesthetic. This makes the MRIs more involved (and riskier, with the risk of general anaesthetic). It also involves some sort of recovery, because general anaesthetic throws your body off.

When we had our last neurosurgery consult and Dr Rutka ordered an MRI, I asked about having an unsedated MRI. I was told they usually start doing this at 6 years old. Nick is 6, so I wanted to try. I think that he will be able to stay still long enough.
If he is not able to stay still, we will have to reschedule the MRI on another day.But I thought it was worth a try to be able to skip the general anaesthesia.

I have had an MRI myself (when I was pregnant with Nick) and so I know what it is like. I remember needing to stay perfectly still. It was loud and there was a speaker for the tech to talk to me. I kept my eyes closed the entire time because I knew that the machine was a couple of inches away from my face. And to keep myself calm and to distract myself I sang (in my head) the entire Act 1 of Phantom of the Opera. The MRI took about an hour, and so did Act 1.

Keeping my own experiences in mind. I wanted to find a way to prepare Nick for the MRI. When they called us with the appointment day and time, 545pm on Feb 4th, I asked about preparation but they didn't really have any suggestions other than to search for youtube videos. (Which I was surprised about, that Sick Kids didn't have their own video like other hospitals).
I am most worried about how Nick will react to the noises. As loud noises bother him anyways.
This video has some examples of some of the noises.

Nick knows another boy, a couple of years older than him, who had an MRI done recently. So he was talking with Nick about what to expect.

I have also been looking online for some resources.
This link: http://www.texaschildrensblog.org/2013/04/preparing-your-child-for-an-mri/ has a child life specialist who talks about the MRI, it is similar to the above video, but I don't find the noise to be as clear.
Some other resources that I found are:
Specific for Brain: http://kidshealth.org/parent/system/medical/mri_brain.html?tracking=P_RelatedArticle
Specific for Spine: http://kidshealth.org/parent/system/medical/mri_lumbar.html?tracking=P_RelatedArticle

While I am discussing MRI. I also want to understand what information we are getting from an MRI. An MRI is considered to be safe, and does not involve any radiation. Instead it uses magnets and radio waves to take pictures that can create a 3D image of the body. It is important to stay still while the pictures are being taken so that it is a clear image.

The MRI of the spine looks at the bones, spinal cord, nerves and disks. The MRI of the brain can ensure that the shunt is working, but also give a clear picture of different structures of the brain.

So we are hoping for a successful non-sedated MRI which will show that everything is stable. My concern (which is always my concern) is that the change in bracing and the weak knees is a sign of tethered cord and that there is something going on inside that we can't see.

Appointments Galore!

May is our month for doctors appointments.


For 1 month we have 2 SB clinic days, MRI, pediatrician check-up, 2 dentist appointments, neurosurgeon follow-up (which I had to move to June), 1 resources for exception children visit and 1 camp consultation.



First was SB clinic day.


It went well after a bit of a schedule-confusion.


My appointment letter said 0830, but the confirmation phone call said 1030, so we aimed in the middle for 930. We went straight into a room, and stayed there for 6 hours!
My father came with me, which was good because we didn't actually have time for lunch. We were told, 'just one more person' or 'I can come back' but from experience... you grab them while you can.
So my dad went and brought food back to us.


I had one focus. Get the MACE scheduled. But also see and talk to everyone else.

But we also followed up with everyone. Social work to see if there is anything to help us (and introduce herself as our original social worker has left). Psychologist to follow up with our plans from last year and my concerns about Nick's learning. Occupational Therapist to discuss how Nick is doing with school and his wheelchair. Physiotherapy to talk about his walking and mobility.

Nick showed off by letting go of the table and standing there for about 10 seconds... over and over again. The label L3 came out again with discussion about functional muscles. Which I listened to and put aside until I can think more about it.

Dr Church came in and we discussed how everything is. As Nick's developmental pediatrician she is part of everything. I really like and respect her, and the feeling is mutual, she respects my decisions and observations. Nick loves her too. We talked about bowels and bladder and the upcoming MRI to look at tethered cord (which I have successfully pushed to the back of the my mind for the last couple of months).

At the end of the day we saw urology. Discussed the MACE, I already had read or learned what he explained, all of the information was consistent with what I knew. I signed all of the papers and we had a plan (MACE operatively, but if for some reason it was not possible then the c-tube as a back-up). Now it is just waiting for the date.

Nick was actually very interested in what was being said and when we got home that night asked when the catheter was going to go into his belly button.

We also got a prescription for a new type of oxybutynin. A gel instead of the patch. We've had issues with the patch coming off early, and he had a new red and irritated mark from his last patch (that just got worse through the day). So we'll try this new gel.

We left clinic with a ton of information, a plan for surgery, and a car full of tired people, with a drive through rush hour traffic. No clinic again for 1 year, but as usual Dr Church can be contacted earlier with any questions or concerns.

2 days later we were at Sick Kids for Nick's MRI. Sunday morning at 8am. Yuck!

8am meant a very early start.... but no line up or bumping.

Katheryn liked Nick's ninja look.

It worked out really well. I knew the nurse he had, he went to sleep really well and wasn't scared. He woke up drunk and not unhappy. He was fine for the drive home (except for us getting a bit lost - not my fault), and tired for the day.

Now that that is out of the way we have lots of other appointments through the month, and follow up with Dr Rutka in June to see what the MRI says.

One thing I have noticed over the years with Nick's appointments, we seem to have months and months with no appointments and then they all bunch up like this for a month. It makes for a really busy month, but then you know you'll get a break soon.



Another Year in the Clear

We had our annual neurosurgery appointment at Sick Kids yesterday.

Nothing like an early morning alarm clock, waking up a sleeping kid (who woke up great) and getting out of the house in the dark. I made the trek downtown by myself (I hate driving downtown and usually get someone to drive with me). I made a couple of detours by accident but eventually I made it with enough time to spare.

Nickolas had his choice, did he want to go in his chair? Or did he want to walk in his walker?

He was very adamant that he wanted to walk.

 

The benefit of a 8am appointment is that we were in a room right away.
Nick wanted to climb into the window and enjoy the view. He thought all the construction around the hospital was great!! But couldn't figure out where our car was parked.

Dr Rutka came in, talked to us. Checked his shunt on the outside. He said the MRI results were good. One ventricle was slightly bigger than the other ventricle, but that is not unexpected.
I asked about Nick's neck cracking all the time! I know it's pretty minor, he said sometimes it will happen but there isn't anything to do.
We are cleared for 1 more year! Unless of course something happens and we won't need to do another MRI then. Things are staying stable.
He told us that there are still things to watch out for (we are never really in the clear); shunt and tethered cord. Then we were out the door.

We didn't hurry anywhere, Nick wanted to take some time to enjoy the sights, Nothing like being 6 floors up!
The elevators were a bit of a challenge.

The doors don't stay open long enough for Nick to make it with his walker. But eventually one opened close enough for us to get there. On the way to the parking garage we missed 6 different elevators between people coming out, going in and trying to get in there to hold the door for Nick to come in.

Nickolas was very excited to be walking around with all the big people! He was really distracted by the feet, so much that he almost walked head-long into a computer! I stopped him just in time.

He thought it was a great adventure!
All before 9am

MRI time

It is that time of year again.

The yearly MRI.

We got the appointment card in the mail in June, but I didn't think much of it until a couple of days before.

But then I started getting nervous.

Last year Nickolas was not a happy camper after the anesthetic.

He screamed and cried the entire ride home.

And now he's 1 year older, one year more aware of what is going on. So then I started worrying about how he would be.

I wasn't sure if we should try to prepare him a little bit, or just go with the flow.
I decided to jsut leave it as "a trip to the hospital" and go from there.
Nick's brand new t-shirt had arrived, so I figured it was a perfect time to show it off.
And even though we could probably have carried him in and out of the appiontment, I decided to take his chair to let him move around if he wanted to.

Nick didn't really seem to notice that he wasn't allowed to have anything to eat or drink.
He wasn't too sure about the hospital gown, but we got in relatively quickly.
We even skipped the pre-sedation waiting room.

Nick had a little bit of time to look around and explore the sedation room (I don't know what it's called, but it is where he goes to sleep before he actually goes into the MRI).
He was excited that there were characters on the ceiling.

We brought his knight to see if it would help him explore the equipment and room.

  

After everyone was ready it was time for Nick to lie down. He was not happy.
He knew that something was going to happen and he didn't want it to.
He had a mask that went over his face with his choice of scent (watermelon).
He was afraid and crying, I touched him and kissed him and he slowly drifted off.

Then it was Kyle and me - distraction time for about an hour.
Since neither of us had eaten breakfast (since Nick couldn't it wasn't really fair to eat in front of him), we headed off to the cafeteria.
And then the gift shop.
Bad idea.
Between Kyle and I we both had armfulls of gifts and ideas to buy the kids. We put alot back, but did pick up something special for Nick for when he woke up.

It took about 15-20 minutes for him to really by awake, but he thought this new dinosaur was great!

We even got a small 'roar' out of him.

So now the dinosaur has a name Roary

Nick didn't want to let him go.

Pretty soon we got some smiles out of him.

And he drank a whole juice box.

So we were ready to go.

No tears, no crying. He bounced back amazingly well. So much better than last year.

We also got to take home the mask that smelled like watermelon. Hopefully we can do something about that fear about the mask right before going to sleep.

Now I just have to try not to stress about the results...

MRI all done!

So Nick had his MRI done today.

I was pretty good with not worrying about it, until about a week ago. When I realized that general anesthesia is a bit major. I always think the whole tube down the throat thing (intubation) is automatic with general anesthesia. But that's not what they needed to do. Just some oxygen and sedation.

Nick started off pretty happy. Even if he hadn't eaten anything.

When we were leaving the house, he just kinda looked at us as if to say "hey guys, I think you are forgetting something here!"

Nick brought his knight with him!

Nick and daddy played with the coloured bubbles on the wall. While we were waiting to be called.

Then we got called into the room. Asked lots of questions - in triplocate while Nick thought that the stickers on the ceiling where great!

And he thought his new bracelet was pretty cool too!

After going through everything and what the plan was, we were able to ask our questions. And we got some more stats - 12.5 kg and 85 cm tall (which is great, because he hadn't gained wait from January - June). I was concerned that Nick was a difficult IV start. But he was going to have gas first and then the IV. The IV would give the sedation and when he woke up in the recovery room he we could come in.

They try to minimize the invasiveness, if he only needs oxygen for the 90 minute MRI great, otherwise a small tube in his mouth or a larger tube in his throat as needed. (He only needed the oxygen).

Then it was off to the cool waiting room!

Nick decided that he wanted to try out this neato machine.

Peak-a-boo! 

Then we played at pushing the robot in and out of the machine. Lots of fun to play!

That's funny Daddy! 

Wow mommy, this is way to small for you! 

But perfect size for my knight! 

OK Mom, I got this test covered!

Nick was really, really good when we went in and he got the gas.

Kyle and I got to go in and touch him and kiss him. He didn't cry or anything. But when we asked him if he was sleepy, he shook his head! As his eyes are rolling around. Then we kissed him and left.

Had some lunch, shopped in the gift shop. And about 90 minutes later we were back.

Nick was pretty dopey. Kinda drunk. He had some problems sitting up straight and we had to make sure we were always there.

But he took some of his cup with minimal fuss.

Then wondered where this IV thing came from.

He kept trying to suck the end.

Lots of drinking, good vital signs and we were done!

I love this look! OK Mom and Dad, I am so done with this MRI business!

The car was 1 hour of very, very cranky baby!

 But once we got home he perked right up.

Ate some food

Drank his juice

And was back to his happy self in no time!

Now that we have one of these under our belt (his last/first one was at 6 weeks) I was thinking it was going to be so much worse! And he bounced back very, very quickly. But 2 people, lots of time, patience and reading material is a must! We were in and out pretty quick (6 hours door to door) and that was without any delays and we weren't bumped for any appointments!

Now we have to wait 2 weeks to get the results!