May 05, 2015

2015 VEEG - Day 2

Today was a busy day! Evan played video games, watched a movie, created an art project, made smoothies, met a magician and had a music therapy jam session!

We had to try again to get an IV and this time they brought in a nurse who has the reputation of always getting the vein. He was amazing: gentle, soft spoken, calm, confident and precise with a needle! Evan was quite nervous but had no need to be and we were all relieved to see the IV functioning perfectly.

Evan hasn't had any seizure activity yet so we will reduce his medication tonight to see if it will push him into having one. We spend so much time trying to prevent seizures that it is hard, even after years of doing this type of testing, to fully embrace the idea of wishing for a seizure. But we don't get to leave until he has one so, seize baby seize!

They also want to do is a SPECT scan. This requires an injection of a radioisotope as soon as Evan has a seizure followed by 3D imaging to determine the specific areas of the brain impacted by his seizures. The challenge is that Evan's seizures typically happen in his sleep and they have to have a nurse sitting next to him ready to insert the radioisotope and at NYU this has to be done between 9am and 3pm. So, they will try to switch Evan's days and nights to get this test. They want us to keep him up until 4am it too! Yikes!!


Mary said...

Thanks for keeping us up to date!
Evan, please be nice to your parents and have that seizure soon, so you all can go back to sleeping at night. (I'm with you, Lisa. It still feels wrong to wish for that!)
I hope you get good information soon!

Mama Lisa said...

Thanks Mary! We are hanging in there!