We were woken up at around 2:30 am by a phone call from one of the NICU doctors saying that they think James had a seizure! They did an EEG (electroencephalogram), which uses a bunch of electrodes attached to the scalp that monitors the electrical impulses of the brain. They gave James Ativan, a seizure medication, at 2:30 am which knocked him out. The doctor said that he will spring back once his body gets used to the meds. They will also start him on Phenobarbital, another seizure drug, and he will get a dose every 12 hours. Stacy is going to try to get a hold of the neurologist and discuss what they saw. We were curious as to why none of the other EEGs that James had showed seizures.
Stacy talked to her dad’s cousin who is a neurologist at Boston Children’s Hospital, and he explained that an EEG is just a snapshot of the brain at a moment in time. James might not have been having a seizure when those other EEGs were given. He also said that James might have been having seizures all along, but they might have been so subtle that we didn’t even notice. He assured Stacy that the meds will help and that this is the least of our worries.
Really? The least of our worries? We have a lot to worry about with this kid. He can’t suck or swallow so he is being fed via G-tube; he has an optical nerve that didn’t fully develop in his left eye so he has vision impairment; they are not sure about his hearing yet, but it looks (or sounds) like he might have hearing impairment; they think he had a stroke in utero which caused some brain damage; he has muscle tone issues; and now he is having seizures. I guess now that I read what I just wrote, seizures might be the least of our worries. At least seizures can be controlled by medication. Unfortunately, many of the other issues that James has cannot be managed by meds.
I think James is really trying to tell us to stop taking so many pictures. This is the second time he has done this:
