IN LIMBO TONIGHT

It turned into an intense weekend for us. Jacob's oculogyrical crises came back last night. I had a quick dinner at our neighbors' party, and then planned on driving him into the ER for an IV medication that supposedly should stop the spells. They look exactly like seizures, but they're not. It is intensed brain activity though, and it's not great for Jacob to have them. He also can't do anything, but going in and out of the spells.
The problem was that Jacob couldn't control his secretions during the spells this time and started choking, so I couldn't really see me driving without being able to suction him. We called an ambulance, and came into the ER around 8 pm at night. Lots of tests were performed to outrule a new infection, and the oculogyrical crises actually stopped! We were home at midnight again, sent our dear friend and neighbor Paula home for the night (thanks for the party and watching Sarah!) and greeted Shannon who was starting her night shift.
This morning, Jacob slept in, but the spells came back pretty much right away. After two hours, we gave him some more Artane as agreed with the doctor. Jacob then took a really long nap - 4 hours! It must have been the longest nap he has ever had at home! The crises came back right after nap time - both in intensity and frequency. We were back and forth with neurology on the phone, and they told us we had to take him back to the ER to start the IV medication congentin.
Joakim went this time, grabbed a hamburger on the way in, and headed down to Aurora. It was the same medical team, so they knew the story from yesterday. This time, neurology had set a plan, so the IV medication could be started. I just talked to Joakim again, and unfortunately the IV medication didn't stop the spells. Next try is benadryl through IV. If that doesn't work, he will be admitted to the ICU and put on Versed. I am just shocked that he might end up in the ICU tonight again. I know it's not so much because these spells are life threatening, but rather due to the strong medication he needs to be put on.
We simply can't make any plans right now. In a few minutes, it can change from us being at home to being at the ER, to being in the ICU. It is sometimes that I can't even really understand it myself.
Tonight when I was tucking in Sarah, and we were talking about the weekend, she was happy with her celebrations, but ended the sentence with "the only thing is that Jacob is really sick". So, I think our little girl understands more than she sometimes tells us.
I am waiting for another phone call to see what way Jacob will go tonight, and we will go from there.
- Maria.
P.S. We did see fire works from our car as we drove home from the ER late at night!