Jan 26
We'd been shifting Jonas sleep schedule in preparation for the upcoming hospital stay and SPECT scan. I've been keeping him up late at night in hopes of getting him to sleep later in the mornings. I got a little computer time while Jonas was still sleeping and Matt and Elliott were at church.
Midnight Walmart run to help the boy stay awake.
Jan 27
Yucky, dreary weather... Good time to be stuck inside the hospital, I guess. (This is the view from our room this time around. Same North facing view, but the West wing instead of the East).
Twenty-seven electrodes super glued to his head, plus two on his back to monitor his heart. He also had an IV line in place for rescue meds (if needed) and for the radioactive dye (for the SPECT). This kid is my hero!
Us!
Grandma Lynn came here to Colorado this time to stay with Elliott, she's SO great! I don't know what I'd do without you mom!
Jan 28
Jonas had tons of seizures Monday afternoon, evening and night. We were all afraid to give him too much medicine, we still needed him to have some seizures during the "dye window". He was given a small amount of valium and slept the rest of the night.
Tuesday, the batch of dye was available between 11 and 2. The nurse and EEG crew came in right at 11 and got him all set up. Not even 10 minutes in Jonas had a seizure. It was smaller than his "usual" type, but they injected the dye. He didn't have any more after that, which was kind of weird for him (he usually clusters). A short time later Jonas was taken down to the radiology for the scan part of the test. He had to be sedated for the scan, it'd be too hard for a 4 year to be still for 35 min straight.
Jan 29
Wednesday the dye was available from 8 am to 2 pm. They were hoping to get a "better" seizure but he didn't have one the whole day, so he was injected with the dye for a "baseline" scan.
Jan 30
Thursday was the last day the dye was available, still hoping for a better seizure to capture. Unfortunately, the time came and went and he didn't have any seizures. So then after all that, he was unhooked and we were sent home.
I asked him what his favorite part about his stay at the hospital was and he said getting his "hat" off. Oh, and the balls (the installation piece near the radiology department). Glad to go home, but a little depressed that they weren't able to capture a "usual" seizure.
Jan 31
Still dreary and bleak. Mom had to leave, sad. Mid-day I got a call from Dr. Lopez with a little info from Jonas' scans. The biggest (and worst) news what that Jonas' seizures did not have a single focus or point of origin. They start from several places and on both sides of his brain (I still don't have all the info, we'll get more later at Jonas' next appointment). This was not what we were hoping to hear at all! This means Jonas is not a candidate for the surgery I was so hoping he could have. I sobbed and cried the rest of the afternoon and evening. I felt so totally deflated. There are still other options to consider for him, but this had been my main hope and the only hope for a possibly med-free future.
Feb 1
I'm definitely happy to see Elliott embrace coloring a bit more. He will still use both hands to draw, but he definitely favors his left.
Later, we made a family trip to Ace Hardware so Matt could pick up a few bolts (the Ghia is SO close to being 100% done!). And no trip to Ace is complete with out popcorn!