I just wanted to quickly update about how Maddie is doing. Two weeks ago, we ended up in the ER unexpectedly due to swelling under her scalp near her incision from her Corpus Callosotomy surgery in July. The neurosurgery resident didn’t seem very concerned, but when the ER attending felt it, he wanted her rushed into a CT scan. It was a little unnerving, especially since 3 doses of Versed given via IV weren’t putting her to sleep. To keep her still in the CT scanner, she needed to be asleep. After 3 hours of trying to get her to sleep, they eventually assembled a sedation team and we got the scan.
The results showed that it was leaking cerebral spinal fluid. The good news was that it appeared clean, not infected. And they felt that though it was unusual, it would resolve on its own. We were sent home with guidance to watch her carefully for fever or any other sign of infection and to follow up with Neurosurgery in 2 weeks. So we will see both the neurosurgeon and her plastic surgeon at Duke on Thursday. She has been doing normally for Maddie since then and the swelling has gone down. Her incision reopened and leaked again just for two days after the swelling appeared. We kept it super clean and I’m hopeful this is the last of the post-surgical complications. I’ll try to report back soon after the doctor appointments.
In other news, her EEG from last month showed lots of improvement. Unfortunately, since then, some of her old drop type seizures have reappeared. She has not been hurt yet, but now we know we are going to have to pursue our next course of treatment sooner rather than later. We do NOT want them to get back to how they were pre-surgery.
While this is devastating, I am trying really hard to keep reminding myself of all the good things that have come out of this surgery. The biggest and best thing is that Maddie is now most of the way potty trained. She actually did it mainly by herself. She just decided she no longer liked going in her diaper in front of people. So we had to leave her alone a few times of day for her to go. And when it was clear how much she was controlling it, we got an adaptive potty (where she is strapped in) and she began using it immediately. She still doesn’t understand the need to stay seated on the potty, but with the seatbelt and padding, it is a safe place for her right now. I sincerely hope the drops don’t progress enough that it is no longer safe for her to continue with this great new big girl activity.
November is epilepsy awareness month. I’m working on a long post talking about Maddie’s battle with epilepsy and I hope (when I post it) that you’ll share it with others. I sometimes still can’t believe how much epilepsy has turned Maddie’s life upside down. Most people do not know how serious epilepsy can be.
Love to you all, Liz, Brandon, and Maddie