We just got home this evening and Ayden is still playing in his room just giggling, talking, and laughing. He went to bed at 8:30 PM and its 11:00 PM, OH WELL! :) Listening to him squeal in delight is just too hard to ignore, but much needed and appreciated. Dr. Wylie sent us home today after reaffirming that she would be presenting her opinion, the VEEG, and MRI to the Epilepsy Management Team. Dr. Wylie believes the current seizures are coming from remaining tissue in the right hemisphere. The recommendation is an anatomical hemispherectomy. They meet once a week so within the next few weeks we should get a call to set up Bub's next surgery. The difference this time, functional vs. anatomical hemispherectomy, is the amount of the brain tissue that will be removed. Although it is more invasive and takes a bit longer for the recovery, we will not be losing ground in his development like we did before. There will not be a need for the inpatient and intensive therapy afterwards and we can just continue his current therapies when we return. Our biggest concern/reservation in regards to the procedure is once again the factor that makes him different from his hemi peers, the HSV. With his first hemispherectomy, the HSV flared up and delayed recovery, but it did respond to the Acyclovir and went dormant again. At that time there were only 2 other cases like his documented so there are still unknowns, we will just pray that the virus will be controlled as the brain heals after surgery.
Why take the risk? Although his seizures are mild now, they are still seizures and could cause falls along with the cognitive damage that cause every time they take a little bit of our Bubba with them. He deserves a chance to be the best Ayden he can be and we have to give him that chance to thrive without the interruptions seizures create and the fog high levels of meds cause. We don't have a date and won't do any planning until then. We don't plan to delay because there is never a "good" time for brain surgery, the sooner the better. Our hope is to be back to "normal" within a few weeks after the surgery, but we will see. Ayden is and always has been quite a fighter! We truly appreciate the prayers and thoughts from every member of Ayden's village :) We feel incredibly blessed to have our Hemi Family to field our questions and understand our concerns and appreciate the notes, calls, even late night texts from friends and family. Thank You!
(PS- it is now 11:24 PM and someone is finally sleeping...)
it takes a strong family to go thru this, and you guys are gonna make it.. He is a beautiful little boy, and he is lucky to have such good parents who love him and are willing to sacrifice all to make sure he has the best quality of life possible. It is amazing how when you reach out there are so many people that will be there for you, that is the hardest things for people to do is make that step. Keep going and don't ever give up, God only gives you what you can handle and he will be there with you this whole time. My thoughts and prayers will be there also and if we can do anything at all for you just ask... Kim Reaves
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