Brain Invasion

Being visual people, Rob and I always get copies of Evan's MRIs and look at them with our untrained eyes. It used to be we had no idea what we were looking at, but Evan's most recent MRIs are pretty dramatic and it's pretty easy to find what we're looking for. Since I have the CD of MRIs, I thought I'd share these really freaky pics of Evan's head...

After the first surgery, Dr. Weiner inserted a depth probe to about the middle of Evan's brain, where the two sides divide. He inserted grids on the surface of the brain too, but the depth probe goes in much deeper and has 8 points on it that collect seizure info. The advantage is that it is getting information from deep inside Evan's brain instead of from the surface. This was extremely important in Evan's case because Evan had three tubers in this area and Dr. Weiner was able to put the probe through all three. The probe ended in the tuber deepest in and this is where the seizure activity was originating in Evan's brain. Up until this trip, every doctor thought the seizure activity was coming from the largest tuber closest to the surface. The image below is of the depth probe in Evan's brain after the first surgery. The white area close to the center of the brain (where the depth probe ends) is the tuber causing all the trouble.

After the second surgery another MRI was done and you can see the area removed in the image below.

If you look really close, you can see a depth probe on each side of the area removed. They go deeper than what you can see in this image and are picking up additional seizure activity. The final surgery will be to remove a little more brain tissue to eliminate the rest of Evan's seizures and remove all the grids and probes.

The crazy thing is that Evan is completely normal after having this much of his brain removed. His spirits are effected by all this brain invasion, but you'd never guess by talking to him or interacting with him that he just had two pretty major brain surgeries.

Evan is Charming the Nurses

Today, I am happy to say, we saw longer glimpses of Evan's true personality. He spent several portions of today flirting with and charming nurses. When he's feeling ok, he's really funny! This morning, at 2am, Evan invited one of the nurses to go on a rocket ride to the Moon, but he told her she needed a space suit first, then he told her it was on backwards! I guess this was her first mission, because she forgot her helmet and then put it on backwards too. After she was suited up they blasted off and visited the Moon and Pluto.

Having Aria here has directly improved Evan's mood and I'm hoping it lasts when she leaves for a few days! She'll be back up here for Thanksgiving, but we don't want her to be here on the day of surgery, it's just too much waiting around.

We spoke with all of Evan's doctors this morning and they are seeing a decent amount of sub-clinical seizures (seizures with no visible signs) on the EEG, and all the seizures are all coming from the area surrounding where the tubers were. This is good because it means Dr. Weiner is getting a lot of clinical data which will help him fine tune what additional tissue needs to be removed. Also, there are no seizures coming from unexpected regions of Evan's brain. After the third surgery they will remove the grids and close everything up. Depending on how quickly Evan bounces back, he'll be moved onto the main pediatric unit. This can happen in just a couple days, but it's different for each person so we'll just have to see how he does. For the moment, Evan's surgery is scheduled for Wednesday, 11/21, but Dr. Weiner is hoping to do it on Tuesday instead. He'll have to go through some negotiations to get OR space, but we're hoping it won't be too hard with the holiday coming up.

MRI

Today Evan had an MRI to get a picture showing the new placement of the grids Dr. Weiner put in yesterday. He couldn't eat because he needs anesthesia with MRI and that was pretty tough because he didn't get brought down for the test until 3:30. That's a long time for a hungry kid to wait to eat!

Evan knew Aria and my mom were on their way up for a visit (thanks Bob and Beth for bringing them up here!) and he was really looking forward to seeing them. When we knew they were close, we told Evan that Aria would be here when he woke up after the MRI. As he awoke, his first words were, "I want Aria". They really do have a special bond. Evan cried when he saw her and then was in really good spirits for the rest of the night. He requested McDonald's for dinner and Aunt Becky (who arrived last night to relieve Uncle Chuck) went running to do Evan's bidding. When she got back he was fast asleep.

The not so great news is that Evan is still having seizures. But the up side is that there is still one more surgery and Dr. Weiner will be able to remove more and hopefully end Evan's seizures once and for all. This is pretty typical with a three-stage surgery so it wasn't a complete surprise, but we were hoping Evan would be done! We should know more tomorrow after Dr. Weiner looks at the MRI and EEG data, but we do know the next surgery will be more involved than just removing grids.

For now I'm just happy Evan is in good spirits and still feel we are on the right track. Seizure eradication, here we come.

Our Son is a Rock Star!

Evan is out of surgery and everything went very well!!! The OR was available earlier than expected, so Evan's surgery was moved up. We were glad to have him go in early because he was complaining about being hungry and it was nice to move things along more quickly for him.

After surgery, Dr. Weiner said he was really excited at how well everything went and he was beaming. He couldn't have been more encouraging. Evan woke up easily and was able to move everything and respond to commands. This is huge because a big concern was the possibility of a deficit on his left side and it looks like everything is exactly as it should be. We'll know more in the coming days, but so far everything looks good.

Dr. Weiner put the grids back in to do more monitoring and the final surgery is scheduled for 11/21. The last surgery gives him the option of removing more brain tissue if necessary, otherwise it'll be a quick surgery to just remove the grids.

I have to say that when we got to the OR I felt so good about everything that I wasn't even worried. It just felt right. Some people say moms have a special intuition when it comes to their kids. I don't know if that's true or not, but I just felt so good waiting for the surgery to be completed, not at all the emotion I'd expect to be feeling.

When I walked out of Evan's room to write this he was sleeping and Chuck just came out and said Evan is sitting up, eating ice and saying he's a rock star! I'm going to go see my rock star now.

Surgery is Tomorrow

As I mentioned earlier, Evan produced a lot of seizures and the doctors got all the info they needed to move forward with surgery. The stars were shining on us and an OR space came available for Evan for tomorrow, Wed. 11/14. Evan will probably be brought downstairs for surgery a little after noon.

We are not a particularly religious family, but we really appreciate our friends and family who are. Evan has been put on a lot of prayer lists over the last couple years and there have been a lot of prayers going up the ladders of multiple faiths: Catholic, Jewish, Christian, Protestant, Mormon, Muslim, Hindu, Buddhist, Quaker, Lutheran, Sikh, Pentecostal, Greek Orthodox, Hasidic and probably some I don't even know about.

We just want to thank everyone for their prayers, well wishes, good vibes and positive energy in whatever form they come in. Please keep it coming, tomorrow is the BIG day!

We feel extremely confident about the surgery and I think tonight we saw our last seizure.

Still Grumpy

Evan has moments of being in a good mood, but is generally grumpy. He asks to go home and continues to ask for Aria, but the good news is that Aria will be here next weekend. We've had offers to get her here earlier, but I think we're going to stick with the original plan because we don't really want her here the day he has surgery.

Evan's surgery is scheduled for Thursday, 11/15, but there is a chance they may do it on Wednesday, 11/14, instead. They have gotten all the clinical data on seizures that they need, so if they can arrange to get the OR they'll push it up a day. It's good news that Evan has been having seizures while we've been here because it gives the doctors a more clear picture of what to remove. There are kids who come in for this and have the first surgery, then never have a seizure and end up going home without going any further in the surgical process. I'm just glad we're not in that situation. We've heard more than once that Evan is following the textbook and we're hoping he keeps it up all the way to being seizure-free after surgery.

Yesterday was a little rough. Evan pretty much slept all day and then threw up a couple times in the evening. He was hard to wake up but his vital signs were good. As a precaution, they sent him downstairs to get a CT scan and after the test he perked right up and was pretty cheerful for a little while. The CT was fine and the nausea might be from the medication so they also gave him something to settle his stomach. One of the hardest things has been seeing Evan so sad and upset -- it's just so out of character for him. We find ourselves just waiting for those moments where he will smile or giggle. Then we sigh in relief, hoping it will last as long as possible before we have to wait again.

McDonald's chicken nuggets seem to brighten his spirits and Uncle Chuck has offered to go to McDonald's ten times a day if he has to! Evan also sat up and requested hot chocolate, so Chuck was off and running for that too.

Evan Misses Aria

Today has been a little rough. Evan is having some pain from the surgery and his stomach is really bothering him. He is on steroids to reduce swelling and they tend to irritate the stomach so that's probably what's going on. This morning my mom called and Evan got to talk to Aria. We thought this would be great for him, but it ended up making him really sad. He spent the next 3 hours fluctuating between whimpering and actually crying because he misses Aria. It was so sad to see and Rob and I felt helpless since he latched on to the one thing we really can't do anything about. We can get him more morphine but getting Aria here instantly is a little tricky. She'll be here next week, so he'll just have to settle for the extra morphine for now!

He's napping at the moment and we're hoping he's in better spirits when he wakes up.