Sunday evening we head to Seattle for Jackson’s 3 day hospital stay. It will be a long 3 days. We check in on Monday at 10:00 a.m. We have an hour and a half appointment with a neuropsychologist who will do a behavioral assessment on Jackson. Then we head to our hospital room where they will attach all the wires to Jackson’s head for the long term EEG. Jackson won’t be able to move around much or leave the room until Wednesday morning. It’s going to be interesting trying to keep him entertained for a day and a half in a hospital room! Jackson is a kid who likes to go. Wednesday morning at 8:00 a.m. they will come get him to put him under anesthesia for the PET scan and a MRI. That afternoon we have an appointment with the neurology clinic and an occupational therapist. If all goes well we should be done around 3 p.m. so we can start the 5 hour drive home. Whew!
I am filled with emotion about this visit. I am exhausted already just thinking about it. I am excited that it is almost finally here. I am anxious to get the results. And I am scared that maybe we still won’t have any idea what is happening in Jackson’s mysterious brain. I am willing to go through anything to get more information about his brain, but I am having trouble having any hope at this point. It seems the last few appointments with doctors I have had some hope and every time I leave in tears, with my hope shot down. I just want some answers and clarity. I want to know why the seizures are coming from the normal side of his brain. I don’t know why this has to be such a mystery. I want these fancy, specialized doctors to figure out why and to tell us what we can do to stop them.
Today Jackson had 10 seizures (the ones I saw anyway). Most of them were strong and lasted about 10 seconds. 10 seconds may seem like nothing but it is a long time to watch your child seize. He was aggravated after a few of them which means they were intense for him. I hate them. Stupid, stupid, stupid, f—ing seizures GO AWAY! Live my kid alone.
Please let us get some answers from these tests. Please.