The elevators at CHOP talk to you. A child’s voice announces which floor you’re on and which direction you’re going next. “Floor 4, goooing up!” it says cheerfully. Sometimes with a British accent.
We’ve spent most of our time here in the South Tower, primarily on the 9th floor, neurology. Floor 9 is the highest so everyone gets off either before or with me. I sometimes play a game in which I don’t watch as parents push a button when they get on the elevator and I try to guess on which floor they’ll get off. Each floor has one or more departments which it primarily houses. We’ve been on three of them inpatient, but never below 7, although our stay on 8 was just one night because that was where there was space available. The parents getting off on 3 always look the most weary and haggard. I can usually guess them with the greatest accuracy.
1st: Emergency Department
5th: Gastroenterology GI, Hepatology, & Nutrition
6th: Cardiac Intensive Care Unit (CICU)
7th: Pediatric Intensive Care Unit (PICU)
8th: Pulmonary Intensive Care Unit
9th: Epilepsy Monitoring Unit (EMU), General Pediatrics, Neurology
On Thursday of last week, Shawn had another MRI. Based on the results of it and other recent tests and the fact that we can’t seem to control his symptoms with procedures or medication, the doctors and I discussed some surgical options. None of which sounded terribly good to me. After a subdued and somber discussion, we decided to talk about it again in the morning.
It was 7:25PM, the cafeteria closes at 7:30PM and I hadn’t had dinner. I jumped in the elevator (“Floor 9, Going Down”), grabbed a pre-wrapped burger, and headed back up. I was foggy and emotional from the discussion with the doctors. The elevator was crowded with mostly parents. I looked at the panel and every button was pushed except 7. The PICU. I’ve written previously about my fear and hatred of the PICU. I looked around and said “oh, come on, no one’s going to the PICU?” and everyone laughed. “Oh god, we were just there last week, it’s the WORST!” said one mother. “I am SO glad we aren’t there anymore and are back on 5.” said another dad. And for the short elevator ride, we all seemed to find some sort of humor in it between ourselves.
On Friday morning, the doctors and I agreed on which surgical procedure to do. A diagnostic one that will hopefully give us some more clues as to what’s going on with Shawn. At best we might even get a diagnosis.
The procedure requires the following days to be on the PICU. Even I agree with this. He has a tube coming out of the side of his skull, after all. He’s had this procedure before, so I knew what to expect. That doesn’t make it easy.
I met with a hospital social worker a couple weeks ago. I’ve never paid much attention to the social workers here because I didn’t think they applied to me but she has put me in touch with a lot of financial and other resources that will hopefully be helpful to us. She also told me that she thinks that Shawn and I have both experienced actual trauma here. As I followed Shawn’s bed onto the PICU floor and started physically shaking, I began to think that she might be right. I remembered the importance of the fixed cervical vertebrae on the PICU. Don’t turn your head. Don’t accidentally glance in any rooms because you can’t unsee something you wish you hadn’t seen. I also remembered the words of a doctor back in November – “you can’t trust joy in the PICU.”
Day 2 on Floor 7 and things were calmer. The roommate we had when we arrived on Friday night had been transferred to a different floor and we didn’t get a replacement so we had the room to ourselves for a night. Our daytime nurse looked at the race t-shirt I was wearing and encouraged me to go for a run outside. Since we discovered that we all run competitively (at times) I chatted with her and our night time nurse at shift change about running and racing and the challenges and benefits of training through our various life stressors. They told me about how their views of working on the PICU have changed at times. About focusing on the horror stories and the wonderful experiences.
Day 3 brought another roommate. A newbie on his first admission. A very logical father raving about how wonderful the PICU at CHOP is during his 21 hour stay here. They left the next day for their specialty floor. You can’t help but overhear everything in these small rooms with each side separated by only a curtain so I knew that they had a clear cut diagnosis and a plan to spend three days on floor 5 and then go home to resume their lives. Lives now altered by the kid’s newly diagnosed disease, but with a plan for how to manage it. I was slightly jealous of them.
Day 4 brought some test results for us. Still no diagnosis but some new clues finally showed up. These results mean that we’ll be staying for at least a few more days but we’re moving in some sort of direction. I’m not sure yet whether that direction is forward or not but we’re doing something. And something is better than nothing. Even bad news is better than no news at this point. Moving in some direction is better than moving in no direction.
Today is Day 5 and Shawn is currently working with his hospital teacher. Other than bingo at 2PM, school is Shawn’s favorite part of the day here. I went out to grab a cup of coffee. When I got into the elevator to go back to the room, I had it to myself. This time 7 was the only button pressed on the panel.”Floor 7, going up!”