Tuesday Morning Update
I feel so happy that Neil and I truly know our child. We continuously fight for what we know is going to happen. We push for what we want and it pays off. Evan was hooked up to eeg monitoring at 10 am. We fought off bringing on a seizure so we could try to get a gran mal documented. 10 minutes after they started recording, Evan had one. The drs didn't want to do this, the drs wanted to give him more drugs prior to having a seizure. We fought for information, as hard as it is to see him go through this, and now we have a little information. We don't know what the drs will do with this info, but, now I feel okay to start him on a med. The drs have a few different thoughts on why he is now seizing. Neil and I also have a few thoughts, some are the same and some are different. There was always the possibility of increased seizures after stimulating the brain through surgery. There is a chance that they went too high on dosage when they put him on the drug he was previously on. There is a chance that it is medication in general. Hopefully, this afternoon we will have a little more insight. Maybe there is a tiny tiny silver lining??
Friday Evening Update
Whew, glad to be done! Dr. B, the neuosurgeon, came out and spoke to us around 6 pm friday. He let us know that he was very happy with how the surgery went and that he was confident that we would not see any deficincies in Evan based on where they performed the MST procedure. He said that the eeg activity in Evan's brain was definitely reduced, but the reality is that there is no guarantee. Dr. B is the best of the best and in speaking about the complexity of Evan's case, he let us know that he was certain that we could have gone to any place else in the United States that specializes in pediatric epilepsy and we would have only found 1 other doctor willing to take on Evan's epilepsy with surgery of this magnitude and forward thinking. To think that we have found one of two neurosurgeons in the country who could help our son is amazing and incredible and mind-blowing at the same time. Evan awoke almost completely only 30 minutes after arriving in recovery and was asking to eat, drink and watch tv before we left there. He was talking very well and drinking and watching wrestling as we were once again getting settled in room 5303 - our home for the last 12 days. To say I was amazed to see how well he was feeling and acting after this 3rd surgery would be the understatement of my life, I thank the incredible skill and knowledge of all his doctors and all the prayers, thoughts and kind words of everyone around this country who have had us in mind and been behind Evan for weeks now. There aren't enough words to say how loved we feel. So thank you all and please keep them coming for a while longer. If you want to read more about the MST procedure they performed, click the link below.http://www.webmd.com/epilepsy/guide/multiple-subpial-transection-mst
Sunday, March 3 Update from Amy
Well...sigh....today is hard. Not the news we were hoping for. Two of Evan's three seizures came from one section of the brain. Right side parietal lobe. The second seizure came from the left side. The doctor is not comfortable doing the re section surgery tomorrow. He needs more information. Tomorrow Evan will have another surgery. This is called a corpus callosotomy. The corpus callosum is a bundle of nerves that connects the two hemispheres. This surgery will sever this nerve bundle and disconnect the two hemispheres of his brain. Some patients lose some use of the opposite side of of their body until the brain learns to communicate again with the other side. This surgery in itself can reduce seizures by half. Evan will be in the hospital for a while longer. He will need to have more seizures. During the surgery tomorrow, the dr will place electrodes within the mid part of the brain. He will be scheduled for surgery maybe Friday. This will either be to take out electrodes and sew him up and live life like we have, or to remove a section of the brain. We are not sure of the outcome. What we do know is that we will have to have the hardest conversation of our lives with Evan tonight. How do you tell your son, who has already been so brave and courageous, that he will have to fight harder, will have to have more seizures, when he thought he had had the last......pray for his continued strength and bravery.....this is a kid that Neil and I admire so much. To have to disappoint and hurt him is going to be awful. Love to all.
Tuesday, February 26
Evan slept through the night pretty much. He woke for a few minutes at a time. He was able to talk to his brother Ben and Grammie and Pipa for a minute. He is still pretty sleepy now. Our plan for he day is to ween off pain meds a little, get him to eat something, and hope for seizures. Check out the pictures of his Electodes. The technicians spent over 2 hours getting him hooked up
Monday, February 25
Evan is amazing. The surgery took only 4 hours start to finish. He had a ct scan after and was in recovery for about 2 hours. The nurses have been amazing as well. He had his own personal referee as a nurse and loved that. The nurses called our cell phone throughout the day to give us updates and to reassure us he was doing well. The doctors came out three times. This was incredible comfort to all. Evan started with grid electrode placement on his right side and then they flipped him over and did the same to his left side. Evan was upset and disoriented as he was coming out of surgery. They gave him pain medicine for his raging headache. We haven't really talked to him much but feel his demeanor was awesome as ever. He stays asleep for now and respond to nurses directions as needed. We are hoping for a good night sleep and a day of seizures tomorrow. I know that sounds funny, but, now we want him to seize. We are holding up as well as can be expected. I draw my strength from Evan and from the arms I feel around us
Head shaving party! What an amazing night! Evan's friends and family came together to show their support of Evan's surgery in 10 days. Thank you for keeping Evan and his family in your thoughts and prayers!
Evan's surgery has been moved back to February 25.