Follow up appointment
We had to set up a follow up neurology appointment for Connor. It was originally back in May, but was postponed twice by us because of how busy those months were with school (for everyone), proms, work, other more necessary appointments, etc.
We ended up making it today, July 17th. At first I could not understand why they set it up with no one that Connor had been treated by. It was some resident in a the neurology clinic. I thought going into it that this person would know nothing about what happened, other than the notes in the computer. We would go in; he would ask how he was doing, check vitals and we would leave.
I was wrong and I did not expect the feel the feelings that I felt when I went in. As we sat in the waiting room, a young boy, about Connor's age, was wheeled in by his sibling, it looked like. This boy ended up sitting in front of me and I couldn't help but feel, wow, this could still be Connor. The boy obviously had nerve damage to his lower extremities and his arms. As thankful as I was that Connor was sitting next to me, well able to move everything right now, I couldn't help but feel sorry and as if we "dodged a bullet" ourselves.
When the resident came out, there was a familiarity to his face. At first I thought, gee, is this a former student I know? When we got in the room he shook Connor's hand and told him he had been in one weekend when Connor still had the tube in his mouth. Then I recognized him as one of the many doctors I had seen in the last five months. I knew he looked familiar. So right there, it was a comforting feeling that this person knew Connor and everything about his situation, but at the same time, there was a feeling of being drawn back into some place I did not want to go. The doctor was very nice. He told Connor, more than once, he couldn't believe how well he was doing compared to the last time he saw him. He showed us Connor's brain images. He then explained that this might not even have been ADEM. He said that it was on the spectrum of auto immune illnesses. He said that ADEM patients normally do not recover as well as Connor, so there still was some question. For some reason I felt my stomach drop out of place. I think it was that we had come to accept what it was and it was familiar to me, but having someone say it may not have been what it had been labeled, made me a little uncomfortable. Then he said that they didn't even know if Connor would get his ability back again. I said that no one had expressed that at any point and of course he said they wouldn't because they didn't know.
It just turned up a lot of turmoil in me. They still don't know everything they could about Connor or others. This dr. said that the department chair, who is known as the top nation wide for working on these types of issues, was even puzzled by this. I began to feel nauseas. He did a physical exam of Connor and of course he is doing well, but his left leg and right arm reflexes lag behind. It is normal and may stay or not, but clinically he will continue to improve, they think.
His attending came in also and both said that Connor may have the symptoms again if he becomes ill. The brain has rewired to work around the myelin damage, but the brain will revert back to it's old paths if his body is overtired and ill.
I truly felt like crying and nauseous. It was like a physical reaction to being placed in a very similar scenario again. It was a very strange feeling. The doctor said they will probably want another MRI in a few months to see if there is any change in the lesions on his brain, but clinically he is improving and has improved so much that they do not expect there to be anything unusual. He said they may even want to do a spinal tap at which Connor made a definite face. Even though it was so many months ago, he will never forget the trauma of having that painful procedure in the ER. The doctor assured him he does 2-3 a week and will do it without pain. That leads me to believe the first one done on him at the Meriden hospital was not done as best as it could have been. He has suffered trauma from that.
When the doctor left the office, I asked Connor if he was ever angry about this and he said no. I said the way he said it even seemed like he could have some anger he doesn't realize inside. He said no. I told him I was never angry either. I think we actually are fortunate, blessed that he has all of the ability he has.
I don't know why this happened and I can say there has been so much good out of it. But, I also don't like that my son doesn't walk the way he used to yet or run the way he used to. They asked if he is able to play sports and he said, he can walk and run, but it isn't pretty. He is so funny. I am not sure how any of us got through it, even with all of the support. I don't know how Connor got through this. His body has undergone so much in six months and thank goodness his mind has stayed perfect, but also how hard to go through this with a sane mind.
I guess I just needed to release some of the questions, feelings, emotions that came back to me today. Life goes on as normal and yet it doesn't take much to bring us to places we barely made it through. One thing for sure, I don't think I knew how much I could and do love each of my children.
Irony - after this appointment, I brought Keera and her friend for ice cream and dairy queen. They ate their ice cream and tried to get the trucks to honk as they drove by. The fun they had and the smiles they brought truck drivers and cars alike-life is so wonderful, so painful, so full of emotion and feeling.
We ended up making it today, July 17th. At first I could not understand why they set it up with no one that Connor had been treated by. It was some resident in a the neurology clinic. I thought going into it that this person would know nothing about what happened, other than the notes in the computer. We would go in; he would ask how he was doing, check vitals and we would leave.
I was wrong and I did not expect the feel the feelings that I felt when I went in. As we sat in the waiting room, a young boy, about Connor's age, was wheeled in by his sibling, it looked like. This boy ended up sitting in front of me and I couldn't help but feel, wow, this could still be Connor. The boy obviously had nerve damage to his lower extremities and his arms. As thankful as I was that Connor was sitting next to me, well able to move everything right now, I couldn't help but feel sorry and as if we "dodged a bullet" ourselves.
When the resident came out, there was a familiarity to his face. At first I thought, gee, is this a former student I know? When we got in the room he shook Connor's hand and told him he had been in one weekend when Connor still had the tube in his mouth. Then I recognized him as one of the many doctors I had seen in the last five months. I knew he looked familiar. So right there, it was a comforting feeling that this person knew Connor and everything about his situation, but at the same time, there was a feeling of being drawn back into some place I did not want to go. The doctor was very nice. He told Connor, more than once, he couldn't believe how well he was doing compared to the last time he saw him. He showed us Connor's brain images. He then explained that this might not even have been ADEM. He said that it was on the spectrum of auto immune illnesses. He said that ADEM patients normally do not recover as well as Connor, so there still was some question. For some reason I felt my stomach drop out of place. I think it was that we had come to accept what it was and it was familiar to me, but having someone say it may not have been what it had been labeled, made me a little uncomfortable. Then he said that they didn't even know if Connor would get his ability back again. I said that no one had expressed that at any point and of course he said they wouldn't because they didn't know.
It just turned up a lot of turmoil in me. They still don't know everything they could about Connor or others. This dr. said that the department chair, who is known as the top nation wide for working on these types of issues, was even puzzled by this. I began to feel nauseas. He did a physical exam of Connor and of course he is doing well, but his left leg and right arm reflexes lag behind. It is normal and may stay or not, but clinically he will continue to improve, they think.
His attending came in also and both said that Connor may have the symptoms again if he becomes ill. The brain has rewired to work around the myelin damage, but the brain will revert back to it's old paths if his body is overtired and ill.
I truly felt like crying and nauseous. It was like a physical reaction to being placed in a very similar scenario again. It was a very strange feeling. The doctor said they will probably want another MRI in a few months to see if there is any change in the lesions on his brain, but clinically he is improving and has improved so much that they do not expect there to be anything unusual. He said they may even want to do a spinal tap at which Connor made a definite face. Even though it was so many months ago, he will never forget the trauma of having that painful procedure in the ER. The doctor assured him he does 2-3 a week and will do it without pain. That leads me to believe the first one done on him at the Meriden hospital was not done as best as it could have been. He has suffered trauma from that.
When the doctor left the office, I asked Connor if he was ever angry about this and he said no. I said the way he said it even seemed like he could have some anger he doesn't realize inside. He said no. I told him I was never angry either. I think we actually are fortunate, blessed that he has all of the ability he has.
I don't know why this happened and I can say there has been so much good out of it. But, I also don't like that my son doesn't walk the way he used to yet or run the way he used to. They asked if he is able to play sports and he said, he can walk and run, but it isn't pretty. He is so funny. I am not sure how any of us got through it, even with all of the support. I don't know how Connor got through this. His body has undergone so much in six months and thank goodness his mind has stayed perfect, but also how hard to go through this with a sane mind.
I guess I just needed to release some of the questions, feelings, emotions that came back to me today. Life goes on as normal and yet it doesn't take much to bring us to places we barely made it through. One thing for sure, I don't think I knew how much I could and do love each of my children.
Irony - after this appointment, I brought Keera and her friend for ice cream and dairy queen. They ate their ice cream and tried to get the trucks to honk as they drove by. The fun they had and the smiles they brought truck drivers and cars alike-life is so wonderful, so painful, so full of emotion and feeling.
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