February 1, 2016
Day 1 - Year 8
Josh's take on life is that you can't ever let people be satisfied with the status quo... if people start to settle in and relax then it's time to shake things up; or at least that is what I think he thinks sometimes. Yesterday, after a fairly regular day of church, lunch, lego and bed he decided that he was going to spice things up.
At 10:00 He came crashing (literally crashing and stumbling) into our room, fell onto our bed and began telling us some strange things he was seeing in his room. He appeared drunk, and he was seeing things like lego figures walking through tunnels from his CD player, or a ghost tongue, and robots climbing on our bed. This went on for hours, I did some neuro tests that they have taught me to do and called the fellow on call for neurology. He spoke about feeling like he was floating and inquired as to when he would feel 'normal' again. At 4:00 he really began freaking out when he saw ants crawling all over his room and trying to rip down his posters. I brought him to Sick Kids and at about 5:00 he fell into a very deep sleep. Nothing we did would wake him; it was terrifying. At one point we had the ER doctors, the Neurology staff and fellow, the ICU doctors, a respiratory therapist and a whole contingent of nurses leaning over his bed trying to get him to wake up. They resorted to some painful tactics but still he wouldn't wake up. We were sent to CT scan to look for a brain bleed, he had an eye ultra sound to see if his optic nerve was enlarged and then he started to have the facial ticks seizures that he had after his stroke when he was a baby; which brought back all of those horrible scary moments.
(I am telling this in a very matter of fact, quickest way possible because I honestly can't think straight.)
At some point (no idea what time) they got through to him a little with pain, he didn't wake up per say but he was responsive to the pain which was a positive. At around 1:00 pm he woke up and was quite groggy, had unresponsive pupils and not a great recall on the events of the night/day but within the hour he was doing much better. We had an MRI and it's showing no new stroke sights and no brain bleeds which was the main concern for all involved. We have been admitted to the Neurology ward and have an EEG scheduled for tomorrow sometime; they are now assuming it's more seizure activity.
That is how Josh shakes things up when things are status quo.
For obvious reasons we are all exhausted and feel like we have been through a combat zone. We have had some pretty scary moments with Josh, that's not new, but seeing him lying unresponsive was enough to make me ill.
All that being said... He's now playing star wars WII and just finished his second pepperoni pizza. When I joke with him about this being a hotel he smiles and says its fun. Today, in a weak moment I started crying in the coffee line and looked up to see the chaplain we have known since our first night of knowing Josh, he wrapped a gentle hand on me and led me to Josh's room to pray with him. It's those stars in the dark night sky again, shining through when you are looking up.
I think sometimes Josh just likes to remind us that we are still alive, and he does it by giving our hearts a restart.