Here’s the update on Madison. The next day (Wednesday), Madison started getting more and more uncomfortable. At 1pm, she started having these very unpleasant fits where she’d writhe, scream and bite anything she could sink her teeth into (people, stuffed animals, the metal bars on the crib, etc). At first the fits lasted about 5-10 minutes and didn’t happen very often. They would wear her out, and when it ended she would pass into a deep sleep. As the afternoon progressed, the fits became more common, and by the evening they were happening more than once an hour. She was totally inconsolable and non-responsive during the fits, and all we could do was to make sure she didn’t hurt herself until they subsided.
Knowing that the next surgical step would likely mean the placement of a fourth catheter, we continued to explore any other possible reasons for her discomfort. Her cultures came back negative and an abdominal x-ray didn’t show anything. Eventually, her fits were coming several times an hour, so we paged neurosurgery.
Our surgeon came by and decided we couldn’t wait any longer. This was likely a shunt issue, and it needed to be fixed ASAP (via surgery #17). We were scheduled for a CT scan for one last check, and the OR was scheduled for 1am (Thursday). By 12:30am we handed her off to the surgical team and went back to her room to try and rest.
The surgery took until approximately 4:30am. The easy fix of trying to extend an existing catheter didn’t work, so they had to drill a new hole in her skull and place the fourth catheter. The procedure went well, and there were no surprises. By 5:30, she was back up in her room on the 6th floor. Our surgeon confirmed that it was definitely a shunt issue. I don’t know the units, but when they tested the pressure in her head at the start of the surgery it was something like ‘45’. Ideally, you’d want that to be around ‘5’. No wonder she was uncomfortable. By the time the surgery was over, her pressure was under ‘10’.
Once we determined Madison was resting comfortably, I headed for home to take a nap and Julie tried (unsuccessfully) to sleep on the couch in Madison’s room. While I was at home, Madison started waking up and eating and drinking again. I came back by lunch and swapped places with Julie who took her turn to take a nap at home.
As of now, Madison is still a little woozy, but far more interactive than she was yesterday. She’s answering questions, and sitting in her bed listening to Little Einsteins.
Hopefully this means she’ll be out sometime tomorrow morning (knock on wood). More updates as we learn more.