Tuesday, September 17, 2013

Day 1 - SPECT

3:55pm, 24 hours after checking into the Children's Hospital at Dartmouth (CHad) and we don't have much to report.

Last night shortly after being admitted, the EEG team of 3 came to get Cam all hooked up. He did a great job laying down and watching Elmo's World while the team quickly got him set with his cool "hat" and "backpack". Then, after much deliberation within the Food Services Dept, they finally decided that it was okay for our three year old to have a hot dog, mac 'n cheese and carrot sticks for dinner (his choice).
We met with Cameron's old neurologist, Dr. Linda Specht, because Dr. Morse is on vacation this week. Dr. Specht had been Cameron's doctor until recently when she decided Dr. Morse was better off making surgical decisions for him. She was sure glad to see him though! Around 9pm the IV team came to get his IV set. THAT was an adventure... Five sticks later and they finally got it. Poor Cam keeps telling everyone about "the guy that pinched me and made me cry". They tried to make it up to him by giving him about 20 stickers. It might have helped him a little, but it wouldn't have helped me! He's a trooper, for sure.
He got half of his normal dose of his medication last night and half again this morning.

At 8am, our favorite neurology nurse came and spent the morning with us. The way the SPECT scan works is he is connected to an IV for 6 hours. Once he has a seizure the nurse injects an isotope into the IV that highlights the seizure activity in his brain, then he's taken to the SPECT machine for the scan. The IV tube is only 5 feet long - sounds like a lot, but its connected to a machine, then goes across his bed and into his arm. This gives him about another arms-length of space to move...Not much when you're three! We started watching videos, playing with cars & trucks on his bed, playing with his Leap Pad, etc. They even had a puppy come sit with him in bed for a few minutes!
The six hours past with no seizures, but man was it a relief to let him get out of bed! Shawn went and got him a basketball hoop from the playroom and some trains. He can't leave his room because he's connected to the EEG. Slightly claustrophobic!
Tonight and tomorrow morning we are skipping his medicine all together and hope to cause "an event" - as they call it, during that time tomorrow. They're also trying to plan for the Visual Field Test tomorrow. Fingers crossed!

Thank you ALL for your kind words, prayers, thoughts, offers, questions, etc. We have certainly felt the love!

1 comment:

  1. Our thoughts and prayers are with you guys! Especially you Cam!
    Love and hugs to you all!