most awful night

I think last night has a good chance of earning the most awful night in the hospital award. If Lisa Martino hadn't come to rescue me yesterday afternoon, helped me get Lars bundled up, AFOs on, and outside onto the playground for one trip down the slide while he felt okay (didn't get a picture), and then treated Andey & me to a lovely beer & dinner at Bertuchi's yesterday evening while Denise covered Lars, I might have ended up on the psych ward. As Lars & I wandered the halls sobbing last night, I was occasionally able to remember the bundling, the slide, the beer, the pizza, or a glimpse of Lisa singing "Stay Awake" (from Mary Poppins) for Lars, & how much he loved it. Her voice & snuggles are like a sedative for him.

After we got back from eating, Lars had a lovely dinner courtesy of Denise & then around 9:00 started just screaming and writhing in pain like we haven't seen in a number of days. We tried morphine & valium & tylenol, but nothing helped much or for long. At one point when we were lying down screaming, he threw up and again did not turn his head to the side. We've had this experience a couple times before and it's terrifying. He just lies on his back, throwing up all over himself. Each time, it has certainly appeared as if he might not have made it if someone hadn't been there to turn his head.

I can vouch for Lars' screaming until around 4:00 this morning, when I literally couldn't hold him or stay awake any longer. I put the rails up on our bed & lay him down with me, held him with one arm & I guess went to sleep.

At some point his screaming must have changed to wild boy kicking & the skinny little bugger kicked his way between the railings of the bed. The nurses found him on the floor kicking around 5:00. Okay, so now we build little pillow barriers between the railings.

Lars finally went to sleep for a little while around 7:00 a.m.

Most of our nurses here have been wonderful: responsive, smart, compassionate, and kind. Last night's nurse was just not what we needed; about a 2 on a scale of 1-10. Then there was Dr. Detachobitch who came to approve the valium when the morphine hadn't worked. The name says it all. Exactly what we didn't need.

About 11:30 today, Larsy went in with Andey for his spinal MRI under general anesthesia. I went to sleep here in the room. They said it would take an hour or so, but it's 2:30 now & they're not back. I need to shower before going to teach, but my roommates have been in the shower for the last 30 minutes. I really want to see Lars before I leave.

It appears this is the end of the road for the diagnostic tests they can think of to do for Lars. The talk now is of working with pain service long-term to try to manage his pain without knowing the origin or cause. "Chronic Pain NOS"?

Dr. Uninformative just came by and told me "you need some sleep." Brilliant.