Journal / December 18

Baton Rouge General Hospital

Saturday December 18, 1993

   Back on duty after being sick.

   Jen’s mucus and discharge from her lungs is liquid and abundant when she coughs it up, requiring almost constant suction to get it out of her trach tube. Dee suctions the tube for two days, on her feet, by herself most of those long hours when I am home sick.

   Jen has a small seizure in the middle of the night. The nurses on duty, Maddie and Geoff, chart it and Dee and I become even more watchful.

   Early in the morning, Bill Scott is doing respiration therapy. Still a tremendous amount of mucus. Even after suctioning, Jen is clogged, unable to take much air in, but keeps trying. Jen stiffens, shakes, goes into a grand mal seizure. Full-blown. Her oxygen saturation drops, the machine alarming, pulse rate slowing, her entire body convulsing for four long minutes. Bill uses the hand oxygen pump to keep air going regularly into her lungs. One of the scariest moments of my life. Watching Jen’s face lose color is like my life draining away. Again, like the 6^th, when the trach dislodged, Dee and I leave the room for a moment. It’s either that or start screaming to the heavens. The first seizure subsides and then another starts, just as long and violent and scary. Dee’s got her hand. I hold Jen’s leg and keep telling her it is going to be all right, between please God prayers telling her that I know it is scary but just hold on.

   Finally, finally, she quiets.

   Calls to Dr. Baker take hours to be returned. Medication takes hours to get charted, ordered, and finally administered. Like swimming underwater.

   Very emotional, teary day. The doctors have no answers. One suggests maybe Jen has a connective tissue disease, the blood vessels in the brain contracting. What happened to the diagnosis of encephalitis? Do they know? Why a week on BHU before the first spinal tap?

   Anne, a good nurse from Canada, comes in and changes Jen’s position in the bed. Always hard, watching Jen being moved, like a rag doll with no ability to control how her body is shaped.

  A nurse comes in and says Dr. Baker called. The CAT scan is “unremarkable" for brain damage.

  Something good to end this long day. But sitting in the room with the view of the old neighborhood, staring at the photographs Dawn brought days earlier, studying those still vibrant images of Jen smiling, healthy, unselfconsciously laughing, looking for any clue to the ailment, I wonder if these images on the hospital wall will ever join those in the old suitcase, mixing with those captured moments of relatives and friends.