So, I obviously haven't blogged in an entire month. What a crazy, tumultuous month it has been for me. But, since this is my journal, and since I will want to have the details written down for some time in the future, it is time that I sit down and write down all the happenings. Just a little over a month ago, my world turned upside down with a single phone call. But I guess that I really must start at the very beginning.
About a year ago, I began noticing that Evan didn't seem to have as much energy as he usually did. One day I took him to the mall playground and after only about 20 minutes, he said that he wanted to go because he was tired. That was unusual. Then, a few weeks later, it happened again. He was too tired to play for very long one day at the park. So, I made a well check for him so I could ask the doctor about it. I don't do well checks that often because my children are fairly healthy. I can measure and weigh them just fine at home and I know the milestones that they need to be achieving. So, unless it is time for shots, I just skip it. But I felt that the fatigue was something worth looking into, so in we went. They did a finger stick and found he was low on iron. So, we started him on a daily vitamin. When we went to have his iron rechecked about 6 weeks later, his iron was up to where it should be, but the fatigue remained. Not bad really, but enough that I noticed. I don't think that anyone else could tell, but I did. So, I just figured that this was his new normal and we went on about our life. Fall came and Evan started preschool. He loved it! He loved his teachers and his classmates. But as it got closer to Thanksgiving, I noticed that his fatigue was getting worse. So, I called and they repeated the labs and x-rays. All his blood work came back fine. I had told myself that if the repeated blood work came back normal, that it was time for me to just let it go and stop my worrying. So, once again, that is what I did. Mid-December Evan got sick when he first woke up on a Sunday morning. I didn't think much about it. Just figured he had a virus. Barth stayed home with him and he felt fine by the afternoon. Never ran a fever, but that wasn't all that unusual for my kids. Then, 2 weeks later, the same thing happened. He woke up, threw up several times and was feeling better by the afternoon. Then, 2 weeks after that, it happened again. So I decided that it must be connected with the fatigue. But I was determined not to worry. I told myself that I had already had things checked out and so I didn't need to worry. Then, Evan began waking up from naps and groaning a few days a week. When I would ask him what was wrong, he would just say, "I don't know. I just don't feel good." It looked to me like he was going to be sick, so I would take a bowl in the car with us when we went to pick up the big boys. And then the headaches started. Not all the time. Just sometimes. But when they did happen, he wouldn't even get off the couch because they hurt so bad. Nothing helped. Not tylenol. Not ibuprofen. Nothing. Then, one day at preschool when we went to get Evan from school, his teacher told us that they had gotten some toys and that they would be having recess the last 15 minutes of school. She said that I was welcome to come early and let Katelynn play while the other kids played. And so that is what we did. What I saw when we went made me worried. Evan couldn't even make it through the entire 15 minutes of recess playing without laying down on the cold hard floor and resting at least once or twice. I decided that it was time to take him back to the doctor. I just couldn't ignore this level of fatigue and the headaches and vomiting anymore. The doctor was concerned more about the new symptoms than the fact that his fatigue was getting so much worse. He ordered an MRI of his head "just to be safe" and make sure that nothing was going on up there. He was thinking about tumors and I was conflicted. I hoped that nothing was wrong, but at the same time, I would love to have an answer to this strange puzzle of what was happening with my sweet boy. Five year olds should be full of energy- running, jumping, playing- not getting tired when you rode a bike for 5 minutes at recess. It took several weeks before it came time for the MRI.
The morning of Feb 24, Evan and I left right after dropping all the kids off at school and Katelynn off at a friend's house. Barth was out of town in Florida. We had to be there by 9:30. There was a lot of waiting around. Things were running behind as they always do in hospitals, but I was expecting that. Finally, a little over an hour later than our scheduled time, they came in, gave Evan his IV sedation, and took him back for the test. I went with him. The test was supposed to take 45 minutes. I should have been tipped off that there was something wrong when it took over an hour for the test. Finally it was done and they wheeled him back to recovery. They said it would be an hour before he woke up, so I went to get a bite to eat and make some calls- mostly to apologize to my friend who was watching Katelynn that it was taking so long. Evan woke up, and we were finally able to leave the hospital at 2pm. We got back by home just in time to pick up Katelynn fast and then head to the middle school to pick up Brian. (Weston was staying after school for something that day.) We walked in the door from our day and I turned on a show for Evan since he was still so woozy from the sedation. I had time to listen to the message from my mom on the phone, plug in my totally dead cell phone, and call my mom back on the house phone. We had been home all of maybe 3 minutes. As I was saying hello, a call beeped in. It was our pediatrician's office. My stomach dropped. I hung up with my mom and answered that call. And with that call, my world turned upside down. The call went something like this:
Me- Hello?
Dr- Hello, Mrs Yorke. How is Evan doing? How was his MRI today?
Me- Fine. We actually just walked in the door from it.
Dr- Well, I am calling with the results of his test.
Me- (Thinking to myself- this can't be good if they are already calling with the results) Okay?
Dr- So, the good news is that Evan doesn't have a tumor. But, his results were definitely not normal. On the right side of his head there is a twisting of some sort with the veins and arteries. It is causing a significant decrease of blood on the right side of his head. There are a few of the radiologists that are conferring about it at children's and I will let you know what they think here in a bit when I hear back from them.
I stood there shocked. I called Barth. I called back my mom. My head was reeling. What did all of this mean? The doctor called back. They were going to refer Evan to a cerebral vascular specialist at Children's. As the days went on, we were left to wonder. The first day I looked up online about what an MRA was. Our doctor said that they would probably want to do one of those at the specialists office. Finally, finally we got an appointment. But it wasn't for 2 more weeks. I was going crazy! I had just enough information to be dangerous but not enough to really know what it meant for Evan. I knew that I should be on the lookout for signs of a stroke. I also knew it was serious. They were going to presenting his case to a group of neurosurgeons before we met with them. I had to take Katelynn in to the doctor because she had an ear infection. The well meaning doctor that we saw (who was not the doctor that we love that sent Evan in for his tests) came in the room to see Katelynn and said, "Oh Mrs Yorke! I just heard about Evan! I am so glad that we listened to you and ran those tests! To think that he could just die and we wouldn't have known why!! But now we can help him!" Well, as a mom with a totally overactive imagination anyway, that was not comforting AT ALL!!! Thankfully as we waited for our appointment to come, Momma and Daddy were able to come and visit us for their Spring Break. It was a nice distraction from the constant worry.
Finally the day arrived of the appointment - March 17. The letter said to expect it to last up to 6 hours. It lasted 4. Barth took off and came too. They asked a lot of questions. Got the family history. Got Evan's history of the last year and all of his bizarre symptoms. We met the neurologist first. He was very nice. He showed us the MRI images. He told and showed us how the carotid artery going up into the right side of Evan's brain was almost totally blocked. We saw the images of the blood flow to his brain. We could see how the left side of his brain was red and yellow which showed lots of great blood flow. We saw how the entire right side of his brain was blue - the lowest blood flow color there was. We could see the fluid on the right side of his brain that was trying to compensate for the lack of blood flow to that side. We were told that Evan would need to be on asprin to thin his blood to prevent a stroke. We were told that all of the strange symptoms that he was having was from the lack of blood to his brain. The times that he was so tired and needed to rest? Those were actually mini strokes. The recurring pain in his left leg was also from the lack of blood flow. The good news was that there was no permanent damage yet. The bad news was that a stroke, hemorrhage, or aneurism could happen at any time. We saw a hematologist next. She basically said the same things that the neurologist said. She also said that Evan needed a cardiology workup to make sure that the heart didn't have a hole and was shunting bad blood up to his brain and furthering the problem. And then we met with the cerebral vascular specialist/ neurosurgeon. And finally we had a name. He wasn't positive, but he thinks that what Evan has is something called Moyamoya syndrome. If it affects both sides of the brain it is called Moyamoya disease, but when it is just one side, it is called syndrome. He said that the MRA (which is basically an MRI with contrast so that they can look at the veins and arteries) will give him the positive diagnosis. He gave us lots more information. He said that once we had the tests done, we would see him again in April. At that point, we would meet the entire team of 8 doctors that are on Evan's case. The next step after the appointment in April will be an angiogram so that they can determine which type of surgery is best for him. There are a few different types of surgery and it all depends on how bad the narrowing is and where it is located as to which surgery they do. We found out that this is a very rare condition. (Of course it is! We always get the weird stuff!!)
In most respects it is all so, so, so overwhelming!! I can't sit and think for very long because it does me no good to think about all the things that could go wrong. To sit and think that my child that I love could die is not helpful at all. If there is one thing that I do know from all of this it is that God is in control of every aspect of our lives. Evan has had multiple blessings. I know that he will be okay. It may be a long road, but I trust in Heavenly Father that he has a plan and that this trial is part of our plan. One talk that has given me great strength is the talk by Joseph B Wirthlin called
Come What May and Love It. I am thankful for such great council from an apostle of the Lord. This has become my new motto. As our family faces this hard trial, we will say, "Come What May and Love it!"
