Thursday the 28th Tina said Linc started doing something weird with his eyes when he was startled. His eyes would wiggle around. It was pretty freaky so Tina called Dr. R, Linc's pediatrician, the next morning to make an appointment. I had to work in the morning, but came home at noonish. Tina had found some videos on the internet that were of other babies doing the weird things that Linc was doing. They looked to be seizures, and according to the internet, babies that get these can either grow out of them unharmed, or can die. A wide range of possibilities, but pretty scary nonetheless. So Tina was pretty upset before even going to the Dr. R's office, but we tried to remain hopeful that he was not having seizures, and instead hoped that these were just one of those weird baby things that sometimes babies do.
We took him into the office and told him that Linc was having little seizure things and showed him this video. They were indeed seizures, or more appropriately, myoclonic jerks.
The Dr. agreed that was unusual, 'interesting' was his word for it. It make me think of the TV show House, unfortunately 'interesting' on that show always means 'incredibly bad.' Dr. R called a pediatric neurologist he did his residency with and got us in to the hospital for an EEG. It was sort of surreal because unlike all our other visits to the hospital, there was no waiting rooms or forms to fill out. It's nice to know they care, but I wish they didn't feel they needed to.
Lincoln sat on the little bed with all those wires hooked to his head while the technician recorded his brainwaves. Tina and I just held Linc, told him everything was going to be OK and hoped for the best. Twenty minutes later the tech was done. Lincoln didn't have a seizure, but apparently his brain was doing something 'interesting'.
We went back to Dr. R's office, which at this time was closing up for the long weekend. He was waiting for us to get back from the EEG. He had received a call from the neurologist who reviewed the EEG charts. Apparently, the EEG was abnormal, but there were no signs of Infantile Spasms http://en.wikipedia.org/wiki/Infantile_spasms , which is the scariest thing in the world. They didn't know what was going on with him and we would need to have more tests. He prescribed Linc some medicine to help with the seizures and ordered some blood tests. We had to wait until Tuesday before we could meet with the pediatric neurologist, Dr. F.
We went to CVS to get the prescriptions filled, but they didn't have 1 of the medicines we needed. They didn't know where I could get it, and obviously didn't care. I dropped Tina off at home with Linc, bawled for a while, and went out to find somebody who had the medicine Linc needed. It made sense to me the one place that should have the medicine Linc needed was a hospital. It turns out the pharmacy at the hospital won't sell medicine. I went to Walgreens, they did have the medicine, but the prescription was sent electronically to CVS so they didn't have the prescription. They needed to get the prescription transferred from CVS to Walgreens, and were unwilling to call CVS to get it transferred. I called CVS and asked them if they could sent the prescription over to Walgreens. They told me that I needed to have Walgreens call them. After a bit of fast talking, they agreed to call Walgreens. Just to be on the safe side, I drove back to CVS to make sure. The pharmacist called Walgreens, but was put on hold so she hung up. She never sent the prescription. I thought about the scene on 'No Country for Old Men' where the guy blew up a car in front of the pharmacy so he could walk in and steal medicine. It did occur to me that blowing up cars wouldn't work as good as it does on TV. Instead we had a brief conversation, where I explained, using small words so she would understand, what needed to happen. Fortunately, she realized that it would be easier just to spend 45 seconds on the phone than it would be to pick pieces of her car out of the cactus. Walgreens now had the prescription and the medicine. 25-30 min. later I was heading back home.
Saturday morning we took Linc to the lab to get blood drawn. I spend the afternoon in the garage working on some stuff, mostly because I was breaking down. Saturday was spent cutting, grinding, welding and crying. I couldn't even open my mouth to talk to Tina without bawling. I was terrified of what could happen. I really want Linc to be OK. I thought of all the stuff that we might never be able to do together and it was soul crushingly horrible.
The weekend progressed slowly and the medicine didn't seem to be helping much. He had 11 seizures on Saturday, 11 Seizure on Sunday, and 7 Seizures on Monday. We couldn't wait until Tuesday so we could meet with the neurologist so she could solve everything. Finally, Tuesday morning we called the office and got an appointment ... for Thursday. Thursday? Thursday? Really? Shit.
The next couple of days were frustrating. Tina and I try not to think about it. We just carry on and hope that he will be OK. The medicine started working a little better. He had 5 seizures on Tuesday, and 5 seizures on Wednesday. It's still heart wrenching every time.
Thursday, today, we finally got to meet with the neurologist. She gave him a checkup and asked a bunch of questions about family histories. We don't have a history of seizures in the family, do we? He looks really good and does everything he should for a baby his age. (He weighed 13lb!, What a chunk!) She talked about what might be going on and what we can do about it. Basically, the answer is that we can't rule out anything. It might be something he will grow out of and be perfectly normal, or it might be Infantile Spasms. At this point we don't know and will have to wait it out.
Linc will be getting more blood work this week to see how his body is handling the medications that he is on, and to see if we can safely increase the dosage a bit to try to get the seizures under control. Hopefully an MRI soon, within the next week or so, (once our insurance approves it) to check for structural damage of the brain. A month from now we will be getting another EEG, unless his condition worsens before then. We are hopeful for a clearer idea of what is going on at the follow up EEG, although, we won't really know how this will turn out for months or years.
We are just hanging on, and hoping that Linc will get better soon.
