So, here is the latest on Madison. She had to have surgery last week (#16) for another shunt revision. One of the ventricles in her brain with a catheter in it appeared not to be draining as well as it should. In addition, there was a cyst next to the ventricle that was growing in size. The surgeon decided to replace the catheter and also extend it so it could drain the adjacent cyst. That surgery happened last Thursday, and it went well. Madison didn’t want to take any food the next day, so her stay at the hospital was extended until Saturday. At 8am Saturday morning, they determined she could go home. Oddly, we had to wait until 1:30pm until the discharge orders came through. Anyway, she came home and seemed to be getting stronger. We had a picnic at an outdoor concert and she was doing great.
On Sunday, we met a friend for breakfast. While we were at her house, Madison tripped down a couple of stairs and bonked her head on the hardwood floors. She cried for a while (who wouldn’t) but seemed OK at the time. Later that day she (and the other two kiddos) had low grade fevers. Tuck this info away for later in the story.
By Monday morning, her fever had mostly subsided and the other kids were feeling fine. She was a little cranky and didn’t want to do anything, but didn’t seem really out of whack. Later that day, Julie and I got a babysitter, so we could go out to watch a movie. When we returned home, our babysitter Amanda informed us that Madison had spiked a fever of 101.1. 101 is the threshold for issues, so I called back into neurosurgery. They didn’t think there was reason to be too alarmed yet, since it was a little early for a post-operative infection, but told us to call back the next day if things didn’t improve.
By Tuesday morning, Madison was not doing well. She didn’t have a fever, but she was very lethargic and was vomiting. Julie called the doctor and got scheduled for a 2pm MRI. The MRI didn’t show any radical changes from the prior scan, but since she was not taking fluids and was so groggy, they admitted her to the hospital. They took a sample of her fluid in the shunt to make sure there was not an infection, and initial results so far are unremarkable.
Our surgeon came by on rounds and his opinion is that he’d like to wait a day or two before trying more surgery. Given her recent fever and bump on the head, it’s possible the symptoms are coincidental to the shunt revision. If surgery does happen, there are two options. First will be to make sure that all the current pieces of plumbing are working. Perhaps her fall knocked something loose. A CT scan should help diagnose that, and surgery would be needed if there is an issue. Second would be to try and drain the spaces on the middle/left part of her brain. These parts don’t have a catheter in them now, and no one is looking forward to adding a fourth catheter to the mix. Aside from another hole in her head and brain, it means another piece that could fail in the future.
So, we are waiting for the surgeons to conclude there is a shunt issue. Surgery won’t happen today, but could happen anytime from tonight to Friday. Madison is very uncomfortable, and is drifting in and out of restless sleep. She is on a regular course of Tylenol and ibuprofen to help her pain and to help her sleep.
More updates will come as we know more.