This morning we met with the new doctor on call. I remember him from last year when we were here. He was very helpful. He really sat down with us and talked. I think this is something Dr. Frost is a little lacking on. Dr. Frost is very knowledgeable and gives great info when you ask questions, but isn't quite the person who shares a lot of info about possibilities and probable outcomes. He likes to say we will wait and see.
We talked about a few more prescription options that might be available and possible VNS. There were a couple of calcium type drugs that were available but are less intense and he doesn't feel they will work. The other option was the Sabril. He really encouraged us to consider Sabril again. When I mentioned that it was something we decided against, he asked why and what our concerns were. He was very gentle about the question and just wanted to hear our point of view. I felt very comfortable talking to him. I mentioned that some day I see Jayen as being able to drive (maybe not when he is 16 but maybe when he is 40, who knows) and peripheral vision is very important to be able to drive. He brought up some good points. If we don't control Jayen's seizures he will never be able to drive anyway. The conversation turned a little and I started asking more what if and abstract questions. I know no one has a crystal ball and can see what is Jayen's future, but I wanted to know if in their medical opinion if they thought Jayen would ever be seizure free again. In my mind, I already knew what the answer was, but I had never heard it from anyone before. I really wasn't ready for the answer. I'm not sure I am still ready for what I heard. At this point the medical team does not feel that Jayen will ever be seizure free. He will NEVER BE SEIZURE FREE! HOLY SHIT!!!!! I don't know how to deal with this for the rest of my life. I don't know how to deal with this for the rest of his life. This was a lot to take in. I know it was my question, and I know I already knew the answer, but deep down I was really hoping to never hear that. It was discussed as well that Jayen would probably always have a delay. I really felt that Jayen would probably always have something a little different about him, but always felt that he would look, act, talk, play, run, and many other things like his peers. My hope and thought was that he truly would fit in and be "normal" for the most part. I guess I just feel now like that isn't necessarily the case. Am I just way out of line to think that he would someday be "normal"? Walking through Walmart (the most non normal place I can think of) would he be able to fit in?
We also discussed the VNS option. Obviously it is still an option and something we are wanting more information on. We talked about how VNS wouldn't be an end all. That VNS helps with the intensity of the seizure, but doesn't stop them completely so he would still have to be on a prescription option. So we will discuss the Sabril a little more and truly weigh our options.
Tomorrow is the 3T MRI. Hopefully that will give the doctors a better picture of Jayen. We will pray for a regular seizure tomorrow morning so we can have the best information to make the best decision with.
The last of our friends that we have made during our stay have started leaving today. It is such a bittersweet thing. We have loved chatting and meeting them. We are so thankful for their continued prayers and send more their way. We hope they all have the answers they were looking for and guidance to make the decisions facing them and their journeys. Goodbye Ivy and Tifannie!!!
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