Thursday, January 21, 2010

Meeting with the NeuroSurgeon

If this post doesn't make sense it's because I worked 12 hours yesterday and I am going on 4 hours of sleep.

The day after the cognitive test were completed, we met with X's Neuro-Surgeon Dr. Wetjen. Here's the crazy/funny part. We were told by the Neuro-psychologist that X and Dr. Wetjen looked very much like they could be brothers, we were like, sure they do. After waiting in the room for about 5 minutes the Dr. came in and we were in a state of shock, they look like they could be father and son. They look so much alike that Sarah couldn't help herself and even told him what we had heard. He laughed it off and began the appointment; I couldn't help but continue to stare at the both of them, it was so uncanny.

The Dr. explained so much about what was going to happen, and the precautions that would be taken. He said the main thing was we were making the right decision, those words meant a lot to us. A lot of the information that he gave us is in the post prior to this, but I will give you a bit more.

He said that the grid was going to cover the left side of his brain. He stated that this was going to be about a 4 hour operation, and that the part of the skull that was cut through was not going to be reattached until after the 2nd operation. Once the grid is in place it would immediately begin to record seizures. One of many interesting facts he told us was sometimes after the brain is exposed it does not have seizure, the reason is still unknown. Some kids have gone as long as weeks without having a seizure.

Once the grid is in place and they have located the spot causing the seizures they would send signals to the electrodes to see if that part of the brain is responsible for a major function (ex. arm, leg, hand movement, speech, sight, ECT.) This way X does not lose one ability for another, it's a bit overwhelming. The Dr. was very kind, and sympathetic during this time, he advised us that X would lead a better life with this surgery, than if we ignored it. He said that we were choosing the lesser of the two evils in surgery, and that his inability to use his right hand/arm was not going to be worsened by the surgery since his brain was already abnormal in that area. He told us all about how resilient children are, and how X would learn to adapt to all of this. It all sounds good, but honestly it doesn't feel good.

A quick side note, a few months ago I told Sarah that I was never going to choose brain surgery because it was not a choice I wanted to make. I didn't want my son being upset that I was responsible for his pain and suffering due to the choice I made. I didn't want him to go to school and listen to the mean kids that may make fun of him, tease, or make him feel insecure. I didn't want girls to not think he was cute as he grew older. I told her that no matter what I would wait until he was old enough to make that decision for himself because it was not my brain. I now eat my words, I am forced to make this decision for him; I am fervently praying that I am making the right decision for my son.

So after he tells us all of this, and gives us the percentages (listed in the previous post) Sarah gets up and leaves. Now I knew she was feeling sick to her stomach all morning, but that was the extent of it to this point. I continue to talk to the Dr. and he said that he wanted to do surgery as soon as possible, then after looking at his appointment books, he said I have Feb. 3rd available. I said OK. He told me that the 2nd surgery would go off a few days later as long as everything went accordingly. I had a few more questions, and he answered them all. One question was how common is it to misplace the grid, having to reapply it later; we have heard of this happening a few times and were concerned with it since it could lead to more complications. He then very confidently explained that he does this type of surgery a lot, and that the Mayo does this surgery a lot. It was not an uncommon surgery for him to perform, and "I will not have to realign the electrodes, I will get them right the first time". His confidence was reassuring, and I knew that he was not just saying this, but knew it. Our conversation wrapped up and X and I waited in the waiting room for Sarah.

We waited, waited, waited and waited, finally she came out but it was not good. She was caring a plastic bag with her jacket in it, and had this poor puppy dog look on her face. She explained that she had been running to the bathroom, only to throw up in her mouth feet from the bathroom door. The vomit continued and erupted from her mouth all over the floor. She courageously attempted to clean it before anyone noticed, but was unable to. Our Dr.'s nurse saw her and helped her out, calling maintenance saying "Someone vomited on the floor". She was so embarrassed, and we left quickly.

We met with X's neurologist a few hours later, and it was more stats, and a repeat explanation of what was going to happen. It was at this point that she asked us if we had let X know what was going to happen; we told her "How do you tell a 5 year old that he is going to have brain surgery?" That is a question we had asked every doctor, every doctor said to be honest, but not to mention cutting into his brain. We still were asking for help, and our Neurologist of all people helped us.

She had X sit on Sarah's lap and explained to him about the meds. not working and that everyone wants to help him get better. She explained to him that he was going to have an operation, and how he was going to feel. This lasted about 10 minutes, he even asked a few questions; his main concern, besides getting "Pokey Shots", was "Is this going to hurt?” That question struck a deep, deep cord in my heart, the fact that my baby X had to ask that hurt.

For about 7 years I have been studying body language, and am able to read it. I have to do it for my job and in life just by habit, and I can tell things by reading body language that most people don't pick up. While we were in that room I was doing just that. I watched as my son started breathing heavier, took long swallows, and avoided eye contact at times. I noticed he looked up when talking about the possibilities of pain, in essence disassociating himself from it. I watched him swallow hard and roll his eyes at the mention of having a headache upon waking up. I could also just sense he was not happy about the whole thing, I started getting teary eyed again (I know big shocker huh), took a few deep breaths and kissed him on his neck, whispering that I loved him.

We left the appointment a bit overwhelmed, we left the Mayo overwhelmed. When this whole surgery thing came to a head we were under the impression that we would have a month or more to prepare. We talked about wanting it sooner than later, but just thought it would be later. Now we only have 15 days to get everything in order before we have one of the biggest weeks of our lives, so far. We are on the verge of one of the biggest decisions that we have ever had to make, and have less than a month to get our house in order. If you are reading this and it is not the 3rd of Feb. 2010, please, please pray that the stress would be minimal, that we would have clear heads, and that we would be able to get our home in order prior to the surgery. We do not want to neglect our twins, and understand that we have to go through this as a family. Just because they are little, does not mean they are clueless, they know something is up. They miss their Xander when he's gone, and vice versa. Please pray. I will keep you all updated, and thanks for your prayer, God is listening.


  1. We love you guys so much. We will continue to pray, and ask others to pray with us.

  2. We'll definitely be praying for you all.