We Have Arrived Le Bonheur Day 1

We arrived bright and early at the hospital at 5:30 am. After being admitted, Karen, Dr. Wheless' nurse brought us to our room in the Epilepsy Monitoring Unit (EMU). She spoke with us for a few minutes about what was on the agenda for the day. Then the nurses started arriving each asking me the same 20+ questions. While we waited for the MRI, Will played in the playroom that is specifically for the EMU children.

When it was time to head down to Radiology the nurse began pulling Will down in a radio flyer wagon. True to his character,  he decided he preferred Daddy holding him. At Le Bonheur they have a program called "Child Life." Their job is to basically help the children cope with what is going on. When Will was about to get his IV a lady came in and started distracting him with books, toys, and bubbles. This helped in a HUGE way. Will let us know he didn't like it, but he didn't freak out like normal. We love Child Life. Will of course chose for Daddy to be the one to take him in to the room where the MRI machine is. Patrick said he didn't cry or act scared just asked for his blanket and was asleep. Patrick and I then went to the cafeteria to eat breakfast which means we technically had a date. :) Sad. I know.

After Will's MRI we met Dr. Wheless. He is chief of pediatric nuerology here and has been the same at St. Jude. He asked for a very detailed history of Will's seizures. He thought we should go off the one medicine will has been on since the onset of his epilepsy last May, keppra and the B6 supplement we started a month or so ago. He would keep Will on the zonegran for now. Following this shake-up he added and "No more diet. Don't go crazy on the carbs. Just get him some chocolate milk." Will loves this guy. Not only has he raised the red flag on chocolate milk he wears cowboy boots and has a beard. This in Will's book means you are the coolest. We really like him too.

"Dump Truck"

After Will had his breakfast and finally released the death clutch on the empty carton of chocolate milk, he had about 30 electrodes hooked up to his head. This took 35-45 minutes. Will didn't care for this but was a good sport for the most part. They ran a few tests with him trying to induce seizures, and then he was free to go back to the playroom. Patrick and I were given instructions that every time Will had a seizure we were to press a button. So we did. Probably 100 times or more that day. By that evening we were told to only press the button for myoclonic/atonic seizures or "drops" and tonic clonic (gran mal).

At some point during the afternoon the Dr. came back by to let us know Will's MRI looked great, but he has 5 sinus diseases. WHAT?! Apparently that just means infection. Disease is a bit of a strong word. And scary. Dr. W. said, "No big deal. That's a lot easier to fix than the brain." We started an antibiotic soon after that.

Will's seizures seemed to increase throughout the day. That didn't change his overall pleasant mood and willingness to do what was asked of him. It was a very long day, but we are so grateful to be here. We need their help.