July 2009. The tumor continued to grow after first receding with Avastin treatment. The surgeon is going to operate to reduce the mass in Laura’s head.
MRI. We were prepared for obstacles and bureaucracy, but our arrival at the surgeon’s office was over the top. First a nurse came out and said that the surgery had to be postponed for three days. They could have called and saved us the trip. Probably some new patient had been put on the operating room list for the next day, and the nurse had been put in the role of the airline gate attendant trying to see who will take a later flight. Laura did not want a later flight. Her extreme distress, to put it mildly, sent the nurse running back to the surgeon. After a while, the nurse came out again to say that the surgery was back on for the next morning. When we went over to the hospital for the MRI, which was scheduled for 5:30 pm, we had to wait until about 7:20 pm before Laura went in. She didn’t leave with her films to return to the surgeon’s office until 8:30 pm. There, a very nice nurse finally did the prep work on Laura’s head, pasting wafers all around to guide the surgeon’s imaging as he cut. She told Laura about an elderly Italian in-law who recited Dante in the original. As we drove away that evening, Laura and I considered to which circle of Hell certain people belong.
Pre-Op. The previous evening had been just a warm up. We waited from 8:00 a.m. until 4:30 p.m. for Laura to go into the operating room. As instructed, she had had nothing to eat or drink since the night before. After enough complaining, we finally got them to run an IV line around noontime to keep her hydrated. Needless to say, Laura was spitting nails at the nurses all afternoon, even as she was finally being sedated and wheeled into the OR.
PACU. Laura got out of surgery about 7 p.m. The surgeon said that he had been able to remove tissue from one area of the tumor. Laura was not feeling well when I arrived in the PACU, but she was coming back to form before I left, challenging the nurse as to exactly what she meant when she said Laura’s labs were “awesome.”
Laura waited the next day for assignment to a room. All the ones for neurosurgery were full. Paul and I went upstairs and checked for ourselves. Laura was awake, alert, and anxious to get out of there. Because of the nature of her surgery, Paul explained, she needed to be in a telemetry bed (i.e., hooked up to all sorts of monitors). There were not enough telemetry beds on the floors for all the patients who needed them. It sounded like this was not a new situation. Two of the nurses told me to call Patient Services to complain. They’d been through this before, and had to deal with the frustration of patients and families. Of course, Patient Services was closed and did not reply to my voice message.
Laura spent a second night in the post-op area. To describe her as unhappy would be too weak. I’m certain that her nurses would not have used those terms to describe her mood. Before we left, Paul and I had gently admonished her not to take her frustrations out on the nurses. From the look of her nurse in the morning, we had not been heeded.
Advice is cheap. We were not trapped with Laura in a post-anesthesia care unit. This one held six beds with privacy curtains around each bed. All during the day patients were being brought into this room from the OR. All day you could hear patients coming out of sedation or being roused out of sedation by the nurses. Lots of moans and groans and confused questions and exclamations. Explanations and answers by the nurses at a level needed to cut through the din and the anesthesia. Nurses and aides rushing back and forth with medicines. Families coming in to see the patient. Surgeons and consulting doctors visiting the patients. Other patients being wheeled out to go to a room. Noise. Lights. Movement. Somewhat less during the night, except for the emergency surgeries and trips out for MRIs.
Laura spent her second day in PACU waiting to find out if she would go up to the room that was finally opening up or if she would be discharged first. Even though visitation was restricted in the recovery room, the nurses let me stay with Laura an hour and a half on her second morning in the PACU. They were kind, but I also gave them a buffer. Laura was sitting in a reclining chair. Her bandages had been removed. She was sleepy because she’d been in a busy room for two nights, and they had taken her out for an MRI in the middle of her second night. Despite that, by the afternoon she was in much better spirits than the previous two days. Laura made it upstairs to a bed at 3 pm. We found out that she did not hold the record for being trapped in the PACU. Someone else was there for 9 days!!!
The doctor kept Laura in the hospital another night to make sure she was stable enough to go home. When I arrived the next morning after dropping Anne Mei off at camp, Laura was sitting in bed, dressed, and ready to go. Unfortunately the floor she was on had been noisy the night before, and they had come in every hour or so to stick her with something new.