It's been a long day and my whole family is asleep--and it's only 8:00 pm! Evan had an EEG, a Pet scan and an appointment with Dr. Chugani today.
We knew this was going to be the hardest of all the tests, primarily because Evan couldn't be sedated for it and he's not the most cooperative patient. We were expecting shrieks of terror as medical staff held him down, swaddled him and put the EEG leads on his head.
We did our best to prepare him for the test and arrived equipped with lots of Thomas the Tank Engine paraphernalia and early birthday presents from Auntie Rosette, Uncle Bryan, Quentin & Sasha. Before they began the EEG prep, we asked if we could try to see if he'd cooperate before they swaddled him, although, even I wasn't sure it would work! As we began the process, Rob took Aria out of the room to explore the hospital--no need to have two freaked out kids! So, I began doling out the birthday gifts in the attempt to distract him, and amazingly, it worked! I won't go so far as to say that he was happy with the whole experience, but they didn't have to swaddle him. I read to him, sang to him and told him stories as they worked.
After the EEG leads were on his head they gave him an IV, which was no picnic, but they got the vein on the first try. Next they wrapped a towel around his neck (like Rocky) and taped him to the bed--several pieces across his chest and a couple across his legs which were covered in a blanket. They did this because they didn't want him to move around or pull at the EEG leads. Once they began the testing, he had to lay still and I wasn't supposed to interact with him for the full 30 min. test. He did really well and his arms weren't restrained, so I held his hand through the test and calmed him when he cried a little. When the test was over Evan and I were both really glad!
Immediately following the EEG, we walked across the hall to have the Pet Scan. Before getting the sedation, Evan had a seizure while they were taking his blood pressure--too much stress for him I think. Everyone in the room seemed to feel really bad that he had a seizure and decided they didn't need the blood pressure. I think they thought I would be freaked out too, but I'm pretty used to the seizures at this point and it was the fourth one today. While they sedated Evan, I was able to hold him in my arms as they put the drugs directly into his IV site. He gently fell asleep and we put him on the table to have the Pet scan. This test was also 30 min. long and he slept through the whole thing.
When the test was over and Evan woke up, Rob and Aria joined us in one of the exam rooms and we washed all the EEG goop out of Evan's hair, got him dressed and headed to the cafeteria for lunch.
After lunch we met with Dr. Chugani for a consultation appointment. We were very impressed with and him and since he was already familiar with Evan's case, he pretty much knew what we were going to ask before he walked in the room.
So, basically, the whole reason for having the testing in Detroit is because Evan is a candidate for brain surgery. The hope is that the AMT Pet Scan tomorrow will identify which tubers are "hot" and causing seizures, that way if surgery is the only option, they know which one to remove.
Dr. Chugani said he thinks the tuber most likely to be hot is the one right next to his motor strip and removing it would most likely leave Evan with a permanent impairment of his left hand--maybe a little, maybe a lot. Because Evan is not suffering in terms of cognitive development, Dr. Chugani recommended trying one or two more drugs first. The two drugs he mentioned are Dilantin and Vigabatrin and we're not thrilled with either, but if one of them works, it's better than surgery. It's also possible that one of the other two tubers are the cause of Evan's seizures, but unfortunately the Video EEG results point to that one too.
So I guess we continue our dance with the conversation of surgery and drugs for a little while and hope that when we have to make a decision, we make the right one.