Kind of a big appointment with neurology yesterday. We have struggled with how to pray and what to pray for since our last visit with neurology in regards to Tanyons seizures. Over the last few weeks they have gotten stronger but at the same time the frequency has not changed much. Our last visit to neurology Dr Perry gave us a few surgical options with the Corpus Callosotomy being his first choice. We left that appointment gut punched a little. How do you pray in this situation? What do you pray for? I have no doubt that God is in total control and the He has a plan for Tanyons life and ours. We have known that this day, this conversation, these feeling were coming. No matter how much you are prepared – “we’ve just about done all we can do for him” hit like a ton of bricks. Tanyons seizures are getting worse for two main reasons – 1. He has an undeveloped brain with less white brain matter 2. He has a very high metabolism due to his high muscle tone, so his body burns thru his medications that help prevent seizures. Currently the way they perform a Corpus Callosotomy it also includes doing a Craniotomy.(yup..OMG is right). It is a very invasive process and the down & recovery time for Tanyon could be anywhere from 2 weeks to 2 months of hospital time. Corpus Callosotomy(see arrows in pic) - for this procedure, the connections between the two hemispheres of the brain are partially or completely severed. Prior to surgery, the patient’s head must be partially or completely shaven. Once under general anesthesia, an incision will allow for a craniotomy to be performed. Then sectioning will occur between the two hemispheres of the brain. For a partial callosotomy, the anterior two-thirds of the corpus callosum are sectioned, and for a complete callosotomy, the posterior one-third is also sectioned. After sectioning, the dura is closed and the portion of cranium is replaced. The scalp is then closed with sutures. The most prominent surgical complication of corpus callosotomy is a stroke. Dr Perry is suggesting using a test technique - The OmniGuide CO (2) Laser System can be used in place of the bipolar electro cautery in a corpus callosotomy to improve midline dissection, decrease the likelihood of entering the ventricle, and improve visualization in the dissection. It also excludes the Craniotomy and is less invasive. Tanyons recovery time could be 1 to 3 weeks. So far this surgery has been done twice in Houston to patients who are older than Tanyon. All this said the procedures do not guarantee that he will be seizure free, nor do they even say that he will see a decrease in seizure activity. They won’t make him walk, talk, run, jump and play or hug his momma and say I love you. The procedure successful or not may help the next kid and his/her family. It may help medicine continue to advance and help kiddos like Tanyon have better lives. Don’t get me wrong, we don’t want any of it to be at the expense of Tanyons health, but as we have said from day 1 – we have to trust and be faithful to God and his plan. We continue to pray that He guides our every decision. Dr. Perry told us to take all the time we needed to make a decision. We will talk with our family and some of our very close friends along with prayer before making any decisions. Meanwhile Dr. Perry is going to try a new seizure med – Lamictal. It will take about 4 months to get Tanyon up to the appropriate dose as the medication requires some delicacy to prevent some side effects. Lamictal can cause serious rashes requiring hospitalization, which have included Stevens-Johnson syndrome. The best part of the day was Tan Mans smile about being able to go to Disney World with his brothers. Dr. Perry is good friends with the head of neurology at the Arnold Palmer Hospital for Children, which is about 20 minutes from Disney World. He said he would place a call and let them know when we would be there and if anything should happen, he would be in good hands. The next step is getting GI to clear him for the trip as well. That appointment is on Monday at 11:40am – Children’s Plano. The boys are excited at the possibility of getting to make some memories together. Fingers crossed & praying that we can make it happen for them. I know I am redundant when I say we thank God for each and every one of you. We are blessed beyond measure, surrounded with love and wrapped in the hands of God. Please continue to pray with us and for us on this journey. We are blessed that God gave us such a special little boy.
Posted on: Fri, 04 Apr 2014 16:58:51 +0000
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