This morning we met with Dr. Lachwani. What a kind man. I kept wanting to hug him. Aside from being kind, I felt he listened well. He asked for every detail I could think of and took copious notes without ever losing eye contact with me. He thoroughly explained the process we’d go through while here and asked repeatedly if I had any additional questions, answering each question carefully. I’m glad he is part of our team.
After meeting with Dr. Lachwani, David had a sedated MRI on his brain. (They sedate him because he can’t hold still long enough to get a good scan.) One nurse brought David a wooden train to paint while we waited and another nurse played Connect Four with David. They were great!
My favorite part was when the anesthesiologist came in to show David the mask that would help him go to sleep. First, she let David play with the mask. Then, she let David smear the inside of the mask with flavored Chapstick so the mask would smell like a flavor instead of smelling like plastic. Instead of choosing just one flavor (grape, watermelon, orange or bubble gum) David chose all four flavors to smear around in the mask. He had a great time. Here is a link to a video of David working with the anesthesiologist…. IMG_0295
Directly after his MRI, the EEG technician came down to start putting 23 electrodes on David’s head to prepare him for the long-term EEG. First, she used a tape measure to measure and then mark his head with a green pencil where each electrode would be placed. I was impressed with the precision. Then, she cleaned (more like scrubbed) each spot marked on his head before placing the electrode. After placing each electrode, she put a glue covered mesh on top to keep each electrode in place. She had a little dryer…kind of like the air blower the dentist uses while working on your teeth…to dry the glue. Lastly, using a syringe, she squirted each electrode with lotion to help it get a better reading on his head. It was quite the process. But, these electrodes need to stay in place for a 3-5 days. So, they have to be secure.
Now we are in the epilepsy monitoring unit. David will be here most of the week. He is hooked up to the EEG and to an EKG 24/7. He is also monitored by video camera all the time except while in the bathroom. (His bathroom is right next to his bed.) David’s wires reach into the bathroom and to the sink, but not much further. The EEG electrodes never come off of his head. That way, the doctors collect brain activity every moment.
While in his bed, we built a train track, played the ipad, assembled puzzles and David helped Grandma try to master Stack the States. By the end of the week, Grandma is hoping to be as good as David at that game.
Whenever David has a seizure, we push a red button and nurses come in and take notes. They are wonderful. They support him through the seizures (since he is awake and aware and afraid,) and help in every way possible. David had a bunch of seizures this afternoon. We kept the nurses busy.
I told Tyler that I feel like I’ve already been here a week. The doctor stopped by the room tonight to talk with me about what he saw on the EEG from the seizures David had today. The conclusion is that David is a complicated case.
Because of the way his seizures happen, the EEG shows a huge electrical storm of activity. The doctor is ordering all of the non-invasive tests they can do to try to pinpoint the seizures. He talked extensively about how he and his team will evaluate the data over as much time as they need to get to the right conclusion for David, even if that means weeks and weeks. Please pray that they can pinpoint his seizure source.
Tonight I am thankful for nurses who played with my boy like a child and not simply as a patient. I am thankful for a neurologist who was kind and patient and thorough. I am thankful for an anesthesiologist who did not rush smearing Chapstick on a plastic mask; who laughed and smiled with my son. I am thankful for nurses who had sweet voices as they worked with my son during his seizures over and over again. And I am especially thankful for a doctor, who came back to the hospital at 10:30 at night, to find a mom to tell her about the EEG he saw today about her son.