For so long the 5 hardest words for me were: My son needs brain surgery. We skirted the issue and anyone who asked about surgery heard us say we were "considering surgery" or Evan "may be a candidate for surgery." We've seen 10 neurologists and 2 neurosurgeons in the past year and a half, and we've talked about surgery with every one of them, but it always seemed so abstract. We were always projecting out into the future. We'd ask about time frames and they'd say maybe in a year or so. Rob and I would both sigh in relief and leave the doctor's office with a prescription for a new drug and the hope that this one would work. Surgery was still on the back burner.
Well, it's been a year or so, the drugs haven't worked, the seizures have increased and we are now faced with surgery. Not this week and not next month, but sooner rather than later.
Today we spoke with Dr. LaJoie and she told us Evan's blood levels are too high, indicating that the Depakote dosage needs to be reduced to get him back down to a safe level. So, we're reducing the Depakote and adding in a new drug, Zonegran. There is something disheartening about starting yet another drug. We also talked at length about surgery, a concept we are reluctantly embracing.
To begin the process for brain surgery, the epilepsy team at NYU Hospital reviews the case and agrees surgery is the correct recommendation before moving forward. Then things start moving. Today we asked Dr. LaJoie to present Evan's case. For Evan, the team meeting is probably just a technicality, but a process I can respect. This is not something to take lightly and I'm glad that even doctors who deal with this every day still take it seriously.