LONG WEEK

It's Sunday night in the ICU. It has been a long week, and a roller coaster ride. Monday, Jacob was supposed to still be in deep coma, but decided that he was done and decided to wake up. By Tuesday morning, he couldn't stand the breathing tube any longer, and they had to move up the extubation. Tuesday was the highlight of the week. Jacob did great breathing on his own, and really seemed to have turned a corner. We saw glimpses of our old Jacob being back, and no seizures. Tuesday night, Jacob was struggling with drug withdrawal and seizures were coming back...Wednesday and Thursday, Jacob was back in status epilepticus and we were told the coma was "the last straw". Thursday was intense with the care conference. Friday was a better day with fewer seizures. The weekend has been great in terms of seizures. We have only seen 2 seizures the whole weekend. Something we can live with in comparison with constant seizures for 11 (!) days without a break.
I am constantly realizing that Joakim and I need to be Jacob's advocates. Wednesday, neurology really didn't seem to have a plan and didn't think they could stop his seizures. By starting on the first drug they suggested, we're already a step closer to seeing much fewer seizures. We have heard though that they might come back, and we have to adjust the dose again, but we're willing to do whatever it takes.
The weekend has been good. Both Joakim and I have spent some time away from the hospital and have had quality time with Sarah. Our neighbor Paula sat with Jacob on Saturday, which gave both of us some time with her. It was really nice. Today, we took Sarah out for lunch as Jacob still has his ICU nurse watching over him at all times. I also got to hold Jacob for 2 hours today. He hasn't endured sitting up for that long earlier, but today he simply sat in my lap as I was chatting away with Wendy, and smiled as he followed our conversation.
If things continue to progress in terms of Jacob's seizures and secretions, we will get up to the regular floor tomorrow. That would be a step in the right direction! I am also curious to see what the new neurology team will tell us tomorrow about "the plan", since we have some progress already. Right now, I am thinking we'll still be here for a while, but maybe not as long as another 4-5 weeks. Again, I am very cautious to not be too optimistic, since this stay for sure has had some surprises along the way...but as I have said earlier hope is the last thing you let go of.
Good night, Maria.