Nystagmus Surgery Trip Day 2 ~ Testing and Pre-Op

If I had to sum up today in one word it would be "exhausted."  Wow.

It was a long day but Cole was a champ and held it together until we walked out of the hospital.  We arrived at our appointment 15 minutes early as requested, at 9:45am.  We filled out some paperwork and were able to meet with the insurance coordinator.  There is quite a bit that we will need to cover, but we have no doubt it's worth the investment.  We waited about 40 minutes and were finally taken back to answer questions about history and symptoms.  The nurse performed the standard vision tests requiring Cole to look at images on a screen and she continued to decrease the size until he was unable to read them.

Dr. Hertle then came in and did similar tests and talked to cole for a little bit asking him questions and if he knew why he was there to meet him.  We was wonderful with Cole and answered all our questions.  It was a little heartbreaking to hear him say, "I don't need formal testing to see that he is struggling." Apparently he categorizes his nystagmus surgery into 9 different sub categories depending on the results from the intense testing.  After his initial exam he sent us off to see several different technicians to have those tests completed.

Just a reminder - you can click on any of the images to see them larger...

Eye Movement Recording (EMR)
The first test was an EMR.  This test is a high speed recording of the movement of the eye consisting of 500 pictures per second.  The recording documents the waveform characteristics, amplitude, direction and frequency of the eye movements.  The test diagnoses the type of nystagmus Cole has and determines the surgical approach.  Cole had to sit in a chair (on my lap) and I had to hold his head still.  He watched as images were displayed on a screen.  The images (Bert, Ernie, Dora) probably switched every 5 seconds and this continued for probably 10 minutes.  By the time this test was done it was almost noon and they gave us a $15 voucher and suggested we go get lunch and come back.

Color Differentiation
After lunch Cole's first test was to take about 12 different color dots and line them up in order.  Although this sounds easy, he had to match each color with the next closest color dot.  He also had to have a patch over one eye and then repeat the test moving the patch to the other eye. This was testing his ability to differentiate the colors which ranged from blue to orange.

The next test included another eye chart on the wall.  He had to look at two stacked dots and indicate which one of the two had lines in the circle. The lines were of differing clarity. The first test he was able to stand right next to the screen.  Then he had to sit across the room and repeat the test.  When he was close he was 100% accurate.  When he moved back he was not able to see even one accurately.

Visual Evoked Potential (VEP) Test
The last test was REALLY taxing for Cole.  The VEP is also painless and checks the function of the rods and cones.  It involves three electrodes placed on the back of the head, one on the forehead and a patch over one eye (and then the other).  He was asked to sit still, back against the chair and stare at a red dot on a screen while the background changed.  It would change from tiny yellow and black moving checkerboard changing into varying sizes.  Very mesmerizing and hard to explain.  He wasn't able to see the red dot so they hung a frog from a wire in front of the computer screen.

He had to stare at the frog until the screen went black.  I would say the timer was probably set to 30 seconds at a time and he probably did this for 30 minutes (15 minutes on each eye) including time to switch the patch.  By the end you could tell it was getting increasingly difficult and he kept leaning forward and tilting his head to see better.  The challenge was the machine had to read his eyes so if he looked away we had to start that test over again.  Keeping his attention on the frog (who never moved) was really hard.

Dilation
When we finally finished the VEP they dilated his eyes and we waited for the medication to take effect.  Then we were taken back in to see Dr. Hertle.  Unfortunately he said it's really hard to see into his pupils since the nystagmus causes him to move.  He said he will get a much better view once he is sedated.  He said that he definitely expects surgery to help Cole


The nurse called over to the Pre-OP department and let them know we were running late.  We finally wrapped up the testing at 2:45pm and ran across campus to meet with the surgical team.  There we were met by the Child Life Specialist who walked through all the tools Cole would be seeing the following day.  Explained the gown, the BP cuff, pulse ox and face mask.  He got to pick his flavor for the mask and picked pink lemonade AND orange.  We then met with a nurse practitioner, the surgical consultant and a technician.  Each spent some time getting history, getting diagnostics and height/weight etcetera.  We were SO nervous his cough was going to stop surgery, but after meeting with the team they said his lungs sounds good and his throat is clear so they don't see any reason anesthesia will not be safe.

Overall we had such an amazing team of professionals who met with us today. They all went above and beyond to really work with COLE to make sure he felt comfortable and had fun.  This last pic is the one that proves he had the biggest muscles in the room (as measured by the blood pressure cuff...which is really a muscle meter).  She was so much fun.

So after being at the hospital for 6 hours we headed to the car and decided to drive to find dinner since the choices in walking distance from the hospital were rather limited.  After a quick dinner and shopping trip for a new jersey for Cole, we headed back to the Ronald McDonald House to relax and gear up for surgery!  No food for Cole after midnight so it's going to be a LONG morning!  Arrival at the hospital at 12:15pm for a 1:30pm surgery time.  It's a go! Prayers can commence !  And thanks to all those at home who are helping watch over Reagan.  She's with nana and pop this week (Johnny's parents) and is having SO much fun!