Krissy and I got up at 3:30 yesterday morning to be in Indianapolis by 6:15 our time for another lumbar puncture. Her pressure was 31.8, higher than last week. We hung around in observation until it was time for her appointment with the neurologist. His office building is connected to the hospital by a breezeway, so the nurse just took Krissy over there in a wheelchair. After a lumbar puncture, she's supposed to lie flat for 24 hours, so they took her right back to a room and let her lay on one of those nice, comfortable examining tables. The doctor was very concerned with how high the pressure was again, especially after he had increased her meds by 25% the week before. He had talked with the neurosurgeon, and we were supposed to make an appointment with him to schedule surgery for the brain shunt. The neurologist also wanted blood work to monitor if the meds were affecting her organs.
Once we got in the car, Krissy called the surgeon's office. They were able to work her in while we were down there. We went to the hospital to have the bloodwork done in the outpatient lab. Then we drove around to the opposite side of the hospital and went in the building where the surgeon's office was. It's quite a campus down there! They took her straight back and let her lay on a very flat, hard table with no pillow. Such a comfy place to spend the next 2 hours waiting on the doctor!
When the surgeon came in, he started talking like we weren't going to do surgery. We were very confused since we had the impression from the neurologist that he and the surgeon agreed that we needed to do the surgery. He explained the 3 different surgeries that can be done to drain the extra fluid. He could put a shunt in her back, but he said he won't do that surgery anymore because it's about a 100% failure rate. He explained the shunt in the brain, but also explained why he didn't want to do that right now. He also said there's a surgery they can do to the eye, but he didn't want to do that yet either. He is sending her for another visual field test this Friday and wants to see her again next Tuesday. He feels that the number of the pressure is not as important as whether she is having headaches or if her sight is in danger. Since she is not having headaches and her sight improved considerably over the last week, he just wants to "watch and wait."
We didn't get home until 6:00 last night. Such a long, exhausting day! But Erin had supper ready, and the girls had the house picked up. We caught up on each other's activities for the day and went to bed early!