home today?

Went to the hospital after class last night & Lars was so pale asleep on Grandma's lap. It had been a rough awakening from anesthesia, and there had been another several hours of intermittent serious pain, like the night before. They said he would fall asleep for a few minutes, clearly exhausted, and then the pain would wake him & he would scream. He did that Monday night, too, the small asleep moments lasting mere seconds. Then he had managed to fall deeply asleep, and was in that state when I came back. Lars still hadn't eaten anything in 24 hours, and threw up the last meal he ate.

Just before we left last night, around 9:00, Lars woke up & was not screaming. In fact, it wasn't long before he felt a little spunky, and was going for the IV line to chew on. (That's the IV line headed to the left from their hands...)
Rats, foiled again.

Andey called home later last night to say that Lars was feeling better, had not been in pain, and had eaten some dinner.

Let's hope Lars not only slept, but stayed ON the bed last night. I keep thinking how glad I am that I lowered the hospital bed all the way down last night.

I rode home in Grandma's rental car, in the back seat with Joa. Big risk for me, given my intense motion sickness. And indeed by the time I arrived home my headache had turned into spinning and I was ready to throw up. I couldn't look at a computer screen to write, and just went directly to bed. I slept like a log.


We have no answers. All the tests are negative. Normal. Having travelled all the way around the board, we're back at "go." Instead of collecting $200, we're just going to go home and figure out what life will be like now. We'll climb on board with the chronic pain magagement team, and Lars will have the best options for pain control available to him.

There's a lot to process and think about. Pain is such a strong and immediate message from our bodies that something is wrong, that something physically needs to change. Giving him medication to turn off that message as a first response seems so tricky. What does it mean to us as parents of Lars who is not able to point to where it hurts, or to say, "No, this pain is different from my usual pain. This is in my ear, or this is in the area of my appendix, or this is my hip."? It will be quite a fine line we learn to stumble upon.

One of my first projects for a free moment is to call Blue Cross to find out if we can get acupuncture covered for Lars. It's time to look down some alternate roads for pain management.

This is one of the finest children's hospitals on the planet. In spite of all my dissing, I do end up having faith that if they can't find out what's going on, probably no one can. I am deeply grateful for all the energy and work they've put into Lars.

I have more to say, but no more time right now. Work at Mercy Centre today, Lars' sure-to-be-contentious IEP meeting in Marlborough at 1:00. Perhaps going to fetch Lars after the meeting. Wouldn't that be something, to be all home together tonight.

Here are some photos from a couple days ago, before this latest pain crisis. Lars was doing some heavy duty listening to a new CD of Native American flute music. He fell in love with the Native American flute when Kathleen played it for him a few months ago, so she brought him this CD last week. Intensely beautiful music.