Monday, July 2, 2012

Brain Fever

Thursday, March 22, started out like any other day. I know this because I don't remember anything about it, just like all of the ordinary days of my life. At about 9:05 that changed. We were just bringing the kids in from the bus, taking off backpacks, and starting bathroom time when my phone rang. I answered, to have Jonathon tell me that he had passed out at school. That didn't make sense, so I went into the hallway to get away from the noise and had him repeat himself, this time without all that nonsense about passing out. Instead, he said, "Mom, I was standing waiting for the bell to ring and I woke up on the floor."

Well. Crap. That's much worse than 'I got really dizzy and had to lie down until I felt better.' I wanted to go back to when I thought that's what he was saying.

I told him I was on my way to get him, rushed back into class to get my purse and tell them Jonathon had passed out, and left. On the way to the high school I called Matthew and told him what was going on. He called the doctor's office and told them I was bringing our son right over.

At this I have to say how very much I love my son and that he is truly a brilliant young man. Having said that, when I got to the school, I went straight to the attendance office (knowing I was going to have to check him out in any case), making a point of looking in the other offices as I went past to see if he was waiting in one of them. He wasn't, so I figured he was in the attendance office, waiting to be checked out. He wasn't. I told the attendance lady that I needed to check my son out and she looked up his schedule and called his second period class and told the teacher to send him to the office. I was quite confused by this because I had told the boy that I was coming to get him, (a), and (b), there was obviously something wrong with the boy, so what was he doing going to class anyway? My confusion was GREATLY compounded when I found out that the class he was in was shop class. The one with all the spinning blades and sharp, cutty things. And he had just  passed out without any warning, as he assured me repeatedly on the way to the doctor's office. But he went to shop. He is still confused as to why I have issues with this because they were still in the classroom part of the class, not the shop part of the class. He wouldn't have gone back there. Whatever.

Dr C of course asked Jonathon what happened. There had been a few minutes left in class so the teacher let them have some free time. Jonathon was standing talking to some friends, waiting for the bell to ring, and he woke up on the floor. There was no dizziness, no light-headedness, no warning. He had not just stood up and he had not been standing for a long time, nor were his knees locked. Also, there was no twitching or foaming at the mouth. He must have hit his head on something, probably the cabinet he was standing next to, because he had a headache and his head was tender in one spot, but he had no bump or redness there.

The not-dispassionate-relating-of-facts includes the four or five kids that stood around discussing what they thought had just happened. Some thought he fainted, some thought a seizure, but NOBODY laid a finger on him to see if he was okay or help him out. Nobody even told the teacher (including my son). As far as Jonathon can tell, he was out for several seconds, because when he woke up, he interrupted the conversation about what possibly/probably happened and people were only barely starting to think about moving to help him. He managed to sit down in a desk, clear his head, and then the bell rang and he went to shop class. He didn't tell a teacher, an office person or a nurse. Neither did anyone else. We have discussed at length how, if this ever happens again, to himself or anyone else, he will be taking a different course of action. As in, some action. Any action besides going to shop class.

And teenagers argue that there's nothing wrong with their brains.

Dr C checked his eyes for proper dilation, and checked his blood pressure and listened to his heart, then sent us over to the hospital for an EKG. Apparently, one generally passes out because of lack of oxygen to the brain. Blood delivers the oxygen, the heart pumps the blood, so the thing to check when one passes out is the heart. Right? Makes sense. Also makes me more than a little stressed out. Matthew's family has a history of heart problems. He has two brothers who died in infancy, his father had surgery in his 40s for a heart defect he had been born with but never knew he had, and Matthew's grandmother had the same surgery when she was in her 60s. When I was pregnant with all three of my kids we made sure the ultrasounds took a good hard look at my babies' hearts. I had thought they were all fine. Now I was fast approaching freaked-out.

After the two-minute EKG I took him home, gave him some ibuprofen for the headache, and I went back to school. Nothing more to do but wait for the doctor to call us back with the EKG results. The next morning Jonathon went to school, and Dr C called Matthew and said that the EKG looked perfectly normal, but a cardiologist wanted Jonathon to wear a halter monitor for 24 hours and see him next week. The freaking-out was reaching advanced stages, despite being told the EKG was fine. They were still looking for a problem, which meant there could still be one. I was stressed, but trying very hard not to be.

After school I took Jonathon to get his allergy shots. We had to stop and put gas in the car, and while I was doing that we were talking about signs of a concussion. There's vomiting and coma and dramatic things like that that obviously didn't apply to Jonathon, but he still had a headache and I told him he had undoubtedly given himself a concussion, but it was mild and nothing to worry about. Then he asked if memory loss was a sign of concussion and I said yes, then looked at him and asked, "Why?" It seems that while he was at school that day, some of his friends were talking about a math test they had taken earlier in the week and had already gotten their scores back for. Jonathon didn't remember taking the test or seeing his score. (He still doesn't to this day.) I got in the car and called the doctor's office. There are two doctors that use the office and Dr J was in that day. I had to explain what had happened the day before, and of course they were very concerned about the passing out business, but I assured them that that was being dealt with and that I was calling today about memory loss. They put me on hold to ask the doctor what I should do. By the time they came back and told me to bring him in, I was parked in front of their office.

Dr J came in with a read-out of Jonathon's EKG and commented that he has a low heart rate, but that isn't uncommon for tall, thin, athletes (Jonathon is 6'2", has 2% body fat and is a runner). Then he checked Jonathon's eyes again, and his reflexes, and looked at the lump that had finally shown up on the side of his head. He definitely had a concussion, Dr J said, but it wasn't too bad because those other things (vomiting, a coma) weren't happening. He needed to take it easy (it was Friday, so rest over the weekend) and if the headache was worse by Monday, come back in, but other than that, no track until the headache had been gone for two weeks. That would mean he would miss the first couple of track meets, but hopefully he would be able to be back by the end of the season.

Monday came and Jonathon's headache wasn't any better, but it wasn't any worse, so we didn't take him in to Dr J. Tuesday we went back to the hospital and he got the halter monitor put on. Wednesday he got the halter monitor taken off. Thursday we saw the cardiologist and the cardiologist said that the information they got from the halter monitor looked normal. But he does have a low heart rate. Just to be on the safe side, he wanted to do an ultrasound of Jonathon's heart, just to make sure. While Jonathon was resting on the table with the little ultrasound wand on his chest, talking to the ultrasound guy, his heart rate was 48. The halter monitor showed his sleeping heart rate at 36. Holy. Crap. However, aside from a RIDICULOUSLY LOW heart rate (apparently Dr J has a knack for understatement), his heart looked perfectly healthy. No reason his heart could give up for passing out like that. So until or unless he passed out again, life was back to normal.

The following Monday Jonathon told me this bizarre thing that had happened in band. He tried to play his clarinet, and couldn't. It squawked and squeaked and made a horrible noise, as if he'd never played it before. Others noticed and were looking at him. He said he stopped and thought, and then it 'was like somebody flipped a switch and all the mist blew away' and he could play the clarinet as well as he ever had. Of course, he didn't tell me this until after office hours, so I called whichever doctor was on call and explained the situation to them. They, again, were very concerned about why he had passed out in the first place, but by this time I had (mostly) gotten over being worried about that and said that his heart was just fine, it was his head I was worried about. It was a concussion, they said, but didn't seem critical, and to call our doctor the next day.

I did, during the day while I was at work. Dr C was in the office again and didn't know about the concussion thing. I explained about the memory loss and the clarinet playing and they said it was a concussion and within the realms of normal. Okay. Fine. Seems pretty weird, but whatever. Then Jonathon came home from school and told me that he had taken a test that day in his AP History class. He'd been talking about this test for weeks. It covered WWI and WWII. He had pages and pages of notes. He knew the material. He was going to ace it. Then 3/4 of the way through the test, he forgot everything. Couldn't answer anymore questions. He was devastated. He really knew the stuff, but couldn't access it at the end of the test. His next class was concurrent enrollment Pre-Calculus. They had started a test in that class on Friday, but hadn't had enough time to finish, so the teacher was having them finish today. Jonathon knew this, and told the teacher what had happened in his previous class. The teacher just looked at him and told him to take the test. I guess I don't really blame the teacher, but you don't get kids taking pre-calculus in tenth grade because they're slackers. Anyway, Jonathon couldn't answer any of the questions. At all. He knew he knew them, but he couldn't access them.

I called Dr C's office back and they said he should see a neurologist. Okay. I can agree with that. And by the way, totally back in full freak-out mode. First you send him to a cardiologist for one lone incident. Now a neurologist for a series of incidents that are obviously not lone. Very, very freaked-out.

The first available neurologist appointment was in July. I didn't take it. There was no possible way July was going to do me any good. Either he would be dead by then or he would be fixed. If this wasn't a concussion to begin with, July was impossible to consider. If it was a concussion, it would be gone by then on its own. Right? I called Dr C's office back to have THEM make the appointment. Certainly an actual doctor calling an actual doctor would make more headway than a freaked-out mom. However, it was right at the end of the work day, and everybody had gone home. No appointment.

Wednesday, one day shy of two weeks since THE INCIDENT, Matthew made a bunch of phone calls and got an appointment with the neurologist. In August. The July one had been snatched up. It seems doctors don't have as much pull with doctors as I thought. And we were on a cancellation list. (Nobody has cancelled.)

The next week was spring break. Still a constant headache, but no new funky stuff. Yay! Progress! Healing! My freak-out-o-meter was actually dialing back. Then Jonathon came home from school on Tuesday the following week. He is a very strange child, but apparently he gets a kind of weird, almost metallic taste in his mouth when he gets hit in the face. It's not blood, and I have no idea how he even knows about this sensation since I was under the impression he doesn't get hit in the face a lot. Goodness knows it doesn't happen at home. However, that just-hit-in-the-face thing happened at school that day. He had the weird taste in his mouth, and his eyes were watering like he'd been bopped on the nose. And, in a truly what-the-crap turn of events, his hands smelled like animals. Specifically, a combination of horses, dog and guinea pigs. They continued to smell like that (to him, obviously) despite washing them. Several times. For the duration of the weird taste, watery eyes episode. Which lasted three hours.

That. Was. It. I called Dr C's office yet again. They said to take him up to Primary Children's Hospital, to the ER, and that hopefully he would see whatever neurologist was on call, because August was just too far out there. No. Duh. I asked Anne (best friend extraordinaire) to watch Kaes and Duncan for me, called Matthew and told him to not bother getting on the bus because we were coming up there, and took Jonathon to Salt Lake.

It would be easy to say I was freaked-out beyond coherent thought, but I was able to drive just fine, and I carried on a conversation with Jonathon all the way up, so obviously I hadn't completely lost it. But in the back of my mind I kept wondering if he had a tumor growing in his head and how much it had grown in the last three and a half weeks. I mean, we never did come up with a reason for him passing out in the first place. Who said it had to be his heart? What if it was all in his head to begin with? Who thinks their hands smell like horses and dogs and piggies as long as their eyes are watering and they have a weird taste in their mouth? Seriously! That right there is something messing with your brain, that's all there is to it. And we had let nearly a month go by calling it a concussion. Mama bear was ready to decapitate people.

Turns out it was a concussion. The ER doctor confirmed it. All of that crazy stuff, including the smells and everything, goes right along with a concussion. The only strange thing about Jonathon was how severe it was and how long it was lasting. Normally, the doctor said, they would see these kinds of symptoms from a car accident, or falling from a great height. (Jonathon is tall, but he isn't that tall.) And just to make sure (and possibly because I was oozing freaked-out-mom from every pore) she had them do a CT scan on him. Nothing in his head but brains. Oh, even more evidence of it being a concussion was his symptom free (except for the eternal headache) spring break. He needed brain rest, so his brain could heal, and that's what he got taking a week off from school. He just needed more of it. And absolutely no track. She gave us a number to call at the U of U concussion clinic so he could start seeing a concussion doctor. Matthew made the appointment on Wednesday, and exactly four weeks since passing out and hitting his head, Jonathon saw the concussion doctor, Dr H.

First I have to say that I am not a die-hard BYU fan/U of U hater. However, please forgive my pleasant surprise when we started going to the concussion clinic (it does fall under sport medicine, so I'm not completely off) and they were so nice. Seriously. I am totally fine with not having to deal with another concussion again in my life, but I wish I could take my kids there for stubbed toes and slivers. Truly the nicest staff we dealt with in all of this, and that is saying a lot.

So, Dr H gave Jonathon a diet of no reading, no computers, one hour of TV a day, two classes a day (easy ones) and one hour of homework a day. And no track. He also had to leave his classes a few minutes early and come to class late so he could be out of the hallways between classes when everything is so loud. This is where things really started to hurt. Jonathon thought he was going to die. And he never was able to really follow the diet completely. However, Dr H wrote up doctor's orders that we took to the school (and they were also very good to work with) and Jonathon started going to two classes a day. AP History and pre-calculus were out, since they obviously made his brain work too hard, but he stayed in band, which made his headache worse, but he really didn't want to miss that.

Two weeks later we went back to Dr H. He gave Jonathon a prescription to help him sleep, because part of this has been that he has a hard time getting to sleep, he's had some pretty funky dreams, and his headache is usually worse in the morning. The two-classes-a-day was working, but he still had a constant headache and it was so close to the end of the year there was no way at that point he could make up all the work in all of his classes even if he got better immediately. So Dr H told him to drop half his classes. Again, the school was amazing to work with. He had to drop history and math, but they were way advanced anyway, so he didn't really fall behind. And he dropped chemistry and French. He had to keep English because it was specifically tenth grade English, but his teacher, who was one of the track coaches and was amazingly wonderful through all of this, helped him pull his grade out of the gutter since Jonathon couldn't really read and even had a hard time focusing if he listened to somebody else reading. He's only one credit behind (or maybe a half credit?) and can make that up easily next year.

So, what I've learned. I do wish I had known about brain rest earlier on. I have no way of knowing if it would have sped up his healing process, but I don't see how it could have hurt. He went almost a month expected to keep up with homework and take tests and do things he simply couldn't do. That was frustrating.

You don't have to throw up to have a bad concussion.

Cut back on physical exertion right after a concussion, but after some time healing, aerobic exercise helps with healing.

It is horribly hard being a parent and watching your baby suffer. Jonathon wants to graduate in two years with his associate degree from UVU along with his diploma. At this point, because of having to drop those classes, we don't if this whole thing has made that goal impossible. And just a week or so before this happened, Jonathon beat his personal record for the high jump. It was during practice, and he never got to go to a meet and do it there. For the most part, Jonathon took this in stride. He was amazing. But there were times when his frustration bubbled over, and I got a glimpse at how hard he was working to keep it under control.

The beginning of May we went to Moab with my family. Jonathon hiked to Delicate Arch with his dad. I didn't want him to go. Dr H said "Two feet on the ground." He didn't want him doing something he could fall off of. Hiking seemed to be on the list. But Jonathon really wanted to go and Matthew was there to keep an eye on him. The headache did get worse on that hike, but over all, Jonathon said that the headache was the best it had been while we were in Moab. I think it was just so quiet out there in the red rock.

I don't know if I can say my son had a traumatic brain injury. I have a friend who was in a car accident and it completely altered her life. Jonathon's life was altered, but I don't know that it was permanent. He dropped half his classes at school. Even he, scholar boy, didn't seem terribly upset about it. Graduating from high school without an associate degree isn't going to ruin his life. And we don't even know if that is going to happen. But it has been rather traumatic. There has been a lot of stress. (And he's been grounded since March because of it, but it doesn't seem to be making an impression, since he only smiles when I remind him of the fact.) A lot of frustration. Kaes has cried because she's worried about her brother, only knowing that something is going on and that Jonathon has 'brain fever.' (It didn't take long for Matthew to start calling it that, and it certainly does more to get a smile than referring to 'the concussion' all the time.) And we're in July, almost halfway through summer, and he still has a headache. He is reading now, but he the headache gets worse if he reads too much at one time (and by the light of an ipod...). He sees Dr H again in August, right around the time school starts again. We're assuming he'll be back to normal by then, but I suppose there is a possibility he won't be, and I have no idea what we'll do if that's the case. His class line-up for next year is killer and he still might have to change things around and not get associate degree after all.

But he does crazy math crap in his head just for fun, even when he can't concentrate well enough to read. And I have to ask him if he has a headache because he doesn't even mention it anymore. And he loves his siblings even though they are usually the source of noise that makes the headache worse. And apparently he is tall enough to knock himself silly, just by passing out.