One week ago today, I took Ava to the ER because she was too sleepy to eat, presumably because her seizure medication doses were so high that they were shutting down her brain. We thought she would be admitted, get rehydrated, have her medication doses lowered and she would soon regain some wakefulness. However, as soon as her medications were scaled back, her seizures returned but although she improved in her ability to eat a little bit, she remained much sleepier than expected.
I pushed the team to repeat some of her testing, including the MRI of her brain. She had that yesterday, and much to everyones' surprise and dismay, the results are dismal. In addition to showing widespread malformation of the brain itself, several important regions appear to have been taken over by tumor (most likely a glioma). The most important region is the upper brainstem, the region responsible for controlling wakefulness, eye movements, and the ability to suck. It's now clear why she hasn't been waking up like we'd hoped. What isn't clear is what this means for Ava. To help her get nutrition while we figure things out, we had a gastrostomy tube placed today. This tube goes through the wall of her abdomen and into her stomach to allow us to put her formula directly in when she can't drink it. She had a tough time with the breathing tube and is being kept in the ICU overnight to watch her respiratory status.
Next week, she will undergo a brain biopsy to confirm the diagnosis, which will hopefully give us more information about whether treatment is even an option. If they are right about it being a glioma, there is little they can do. Fortunately, we believe in a God who can do all things!