Sunday, July 18, 2010


Time can be so subjective. We all have experienced it. Sometimes an hour feels like a life time, sometimes a minute or seconds.
In our house, Sarah will ask the question about time several times a day. How many more minutes before we are there? How many more minutes before they will arrive? How many more minutes before we will go? Sometimes I sigh as I answer it one more time, many times not knowing the answer for sure.
Yesterday, I so sympathized with Sarah and her questions around time. I woke up early due to sleeping on the east side of the hospital with the sun rising at 5 am. The room was also busy with IV antibiotics being set up, and vest treatment and suctioning going on. After having laid around for another hour not being able to fall back to sleep, it was time to get up. We were after all told that we were going to get discharged at 11:30 am!
The morning went by slowly, the target being to be out of the hospital before noon. Our dear friend Kadir came to visit Jacob and me, but it turned into a short visit, since we were going to leave!
The discharge got a bit delayed with our nurse being busy, but at 12:30 pm we were ready to get the needle out, and get our discharge paper. The car already being completely packed!
And Jacob starts to seize...I didn't think it was much to worry about. This is the type of seizures we do see at home, and most of the time we don't treat them outside Jacob's regular medications. Since we did have a car ride ahead of us, I asked the nurse if we could give his Ativan a bit early, so I would know that Jacob would be safe for the ride home. No problem at all!
Suddenly I have two young residents in the room. My first thought is that they are in the wrong room, my other thought is that they are from pulmonology to see Jacob - just a bit late since we're leaving! No - the residents are there for Jacob's seizures. They are shocked that we have waited 5 minutes to give Ativan - despite his seizure protocol actually saying 15 minutes. They are nervous, and I see our discharge fly out the window. The minutes crawling forward as the Ativan kicks in. The residents not thinking it was a good idea that we gave Ativan orally when I tell them it takes 20 minutes to kick in. 20 minutes!!! The nurse keeping her calm. The residents ordering up another dose of Ativan - just in case Jacob needs it. Me trying to keep my calm, and explaining that we NEVER have given two doses of Ativan. In my mind knowing that if we do that, there is no way we will be leaving, since Jacob's respiratory status will be impacted. Waiting for the minutes to crawl forward. Jacob getting out of a seizure, but quickly going into a new one. The residents moving their feet around. Me trying to explain that this is what we deal with ALL the time at home. In the end we're getting to an agreement that Jacob will be monitored for another hour before it's decided about him going home or not.
I am happy that everybody has left the room, but wondering what to do? All our things are in the car. Thinking to get my laptop, but thinking it would be a bad omen to start bringing things back into the room. Maybe a sign that we would have to stay after all.
Jacob being completely happy on his early Ativan. Talking and smiling more than he has done the rest of the day. Me watching the clock for that hour to pass. Time is standing still in my mind. Jacob enjoying watching the movie "The land before time" on my lap, never worrying about time.
After an hour, Jacob has not started seizing again. His nurse can remove his needle, and give us the discharge paper one more time. She is telling me in confidence that she was never worried about Jacob, since she took care of him so many days when he was in status epilepticus in the fall. I am thinking it's only us and the people who care for Jacob regularly who understand his seizures. That Jacob is probably scaring the shit out of a young resident trying to do the right thing! Sending a positive thought to our cool neurologist who always keeps her calm.
We were home about two hours later than I was hoping for. Still time to unpack and settle back home. Still time to hit the pool in the 101 degree heat, and having dinner at home. Realizing that two hours delay is truly irrelevant when you get to go home with your kiddo again.
Love, Maria.

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