We're Home!

EEG - hour 21
Originally uploaded by melnykowycz

Well, we are back home. I wouldn’t call it a nightmare – but it definitely wasn’t a party. Our biggest worry was that it would be hard to entertain Cayla in a room for 48 hours. We knew there wouldn’t be any physical pain or needles, but of course underestimated the emotional toll this visit would take on Cayla. We were in a hospital, with hospital beds and nurses and piles of doctors and lots of really sick kids. Although there were 2 other kids on our floor doing a long-term epilepsy monitoring, everyone else was really sick. The glimpses of bandaged heads, kids in wheelchairs, and rolling beds covered in plastic boxes really seemed to unnerve her. That’s not to say she didn’t have her fun. Uninterupted time on her laptop, new toys, new games, endless snacks, hours of video watching, and lots of phone calls (THANK YOU, THANK YOU, THANK YOU!) put her at ease. But, she was not her usual self. She barely talked to any of the adults who walked into the room and spent most of Thursday sitting on the bed. She was called “shy” by all the nurses. When they took the “buttons” off her head today she started crying on the last one. Apparently it was stuck on with sticker (think band-aid adhesive) and cried for over 20 minutes. As Flannery puts it, it was the sticker that loosened it all. She wailed and let everyone know how she felt about this hospital visit.

This visit has made me appreciate the fact that we have healthy kids. My hats off to the families that spend weeks in the hospital with their kids, day after day, week after week, year after year. Families that eat out of a kitchen the size of our bathroom with nothing but an old microwave and sink, figure out how their other kids will get to school, and have nonchalant conversations in the hallway of when the spinal drain is scheduled.