Monday, July 12, 2010

Brain's not broken, but something seems to be.

Since my last post, nothing much has changed. We now know more officially that whatever is going on with Jaymes is a mystery, thanks to the (apparently pointless) MRI. The good news is that he doesn't have a brain tumor or any kind of damage beyond what was there two years ago. The bad news is that we know nothing at all.

Since Jaymes' MRI was at one in the afternoon, it meant no food after 7am and no anything after 11am. I thought I was being slick the night before, in filling up a baggie with a massive amount of cereal and leaving it right inside his door, hoping he'd fill up early so he wouldn't want breakfast... Bad plan. Not only did he destroy his room like normal (shredded mattress, all sheets off the bed, bed moved across the room, closet massacred...etc) but there was a lovely layer of Cheerio over every inch of his carpet. I opted to put the dogs in there for an hour or so and see if they'd vacuum up the mess- and they did! Good dogs.

The report says "Findings: No significant interval change from prior study in the appearance of the hippocampi. Subtle asymmetry in the architecture of the left superior hippocampus is again noted. System T2 and T1 hyperintensity in the mastoid air cells likely representing an infection/inflammatory process."

I have no idea what a lot of that means, but the first bunch means that his brain looks the same as last time, with no change in the last 2 years. Which is good. Now I can stop freaking out about progressive brain damage and brain tumors and aneurysms and all those horrible things... The down side is, Jaymes issue remains a mystery. I am not sure where we go next. The neuro at Duke will very likely tell me that based on the MRI, we need to just play the wait and see game again. I don't know where else to look for in an effort to diagnose this pupil size, nose bleeding, angry violent Jaymes issue.

So we got to the MRI lab, and I was thrilled to see only one person eating. He was only eating sunflower seeds, so there was no fear of Jaymes attacking him for his food. Unfortunately, the room was full of older folks who were not too thrilled with listening to Jaymes scream and bellow at me "I'M HUNGRY. JAYMES THIRSTY!" But whatever, nothing I could do to calm him down at that time, and we couldn't leave. I was relieved to see the nurse come out to take us into the back. She gave Jaymes the sleepy medicine, but rather than making him sleepy, it turned him into the toddler version of a belligerent drunk. They took him back, and sent me to the waiting room. An hour later, I was called back to help them wake him up, and get the rundown on what happened.

He ended up having several IV's started. The first three, he ripped out. Apparently the meds and his current personality turned on the rage button, and he was absolutely uncontrollable for them. I cannot say that surprises me. So anyway, the big male nurse told me how shocked he was at Jaymes strength. It took 2 male nurses to hold him down to finally get the last IV into him and get him fully knocked out. His little arms are covered in bandaids from the first mess of IV's. Anyway, once they were successful in knocking him out, all went as planned. He didn't really wake up for another 3 hours. During that time, we were taken in a wheelchair to another part of the hospital, via underground tunnel a LONG way, to pick up the report and the CD of the MRI. Got that, but sat there for more than 2 hours waiting for transport to take us back. Apparently they had trouble finding us for whatever reason. Jaymes was still heavily sedated, but he was just awake enough to THINK he could walk, when he could not. So, I couldn't carry him, he was fighting too hard. Finally got taken back though, and was happy to get home. We got to the hospital at 12:30 for the test. Got home at 7:30pm. Yikes.

Got home, and I realized that I was in a bad situation with Jaymes. He was very upset, but still too woozy to walk. He'd jerk away from me, stagger a few steps, and crash head first. His face is bruised up... I thought keeping him in the grass outside would be best till hubby got home, mostly because I was afraid of nose dives on the hardwood floors. He fell down twice, so hard I could hear the impact of his skull and the grass... Makes me shudder to think about that. I finally got him down on his back, then he started puking (sedation makes him puke usually), so I kind of rolled him onto his side and let him get it out of his system. Hubby got home and helped me get him under control after a few more times of the jerking out of my hands and slamming into the wall/ground/my legs. He screamed for about an hour before crawling into his room and slamming the door. He finally went to sleep, did not want anything to do with me or hubby.

Bad day for him. I've never felt so helpless though, watching him struggle out of my grip and slam himself into whatever was around him. I couldn't hold onto him, but I couldn't let go either. I was feeling like we'd be on the way to the ER again with a fractured skull. I'm so glad he went to sleep. That was really scary.

Nobody here had a good day, I guess. I went and rode Rocket a little bit, but it wasn't much fun and I gave up when I realized it was only making me more frustrated and angry. the pony doesn't deserve having to deal with me when I'm upset. So got off, fed him, and gave him some gummy worms. So I plopped myself on the couch feeling ill and exhausted and in a terrible mood.

But hey, at least he doesn't have a tumor, right?!

He did do better the next day, although there were still some nasty outbursts. I took some video for the docs, though the video shows it substantially less serious than it is (probably because I was filming and not trying to slow down his destruction of the house. Believe it or not, my house was spotless until Rampage Number One. Here, have some video. Yes, he's in his shirt and a diaper, the mayhem started early. He did eventually get dressed. And yes, the tupperware box upside the head did hurt!

Last night, we heard Jaymes crying in his room after bedtime, turns out he had another nosebleed. This one was a little one, at least... I let him hang with me in the living room just in case it wanted to start gushing. Poor little guy kept saying "want to go to hospital." I didn't really see any point to hauling him back to the ER, it was not gushing and there isn't a thing the ER docs could do anyway. He was adamant though, he wanted to go to the hospital. He was quite unimpressed with my lack of panic this time. Poor guy, it breaks my heart to see him begging to go to the hospital. I wish he could just tell me what's wrong.

Today was his first day of summer school. His teacher seems to be really nice, and I did let her know that if he has a small nosebleed, to call me asap, but if it's a gusher, to take him straight to the ER. He's the only kid I saw on his little "short bus" but is already popular with the bus driver and bus aide. And seriously, why is it he gets a bus aide for summer school in the ghetto school, but not during the year for the nice school? And also, I wish they gave out bullet proof vests to parents, so that I wouldn't have to worry about someone shooting me as I drive into that neighborhood. SCARY. I feel for the kids who have to go to this school all year long. Not a nice place.

I put together a basic summary of Jaymes' meds/issues/history for the Neuro at Duke tomorrow, as well as a calendar with times and places where his pupils did their unequal thing. Hopefully the doc can be bothered to read it, and hopefully he doesn't blow me off. We need to get poor Jaymes figured out. He could use prayers for a good neuro appointment tomorrow!


Angela said...

Your son is mimicking the same behavior of my almost four year old. My son has seizures all day long. And his behavior has gotten progressively worse with the introduction of his antiseizure meds: Kepra and Depakote. I feel for you. It's gotten almost impossible to take him out to do anything, I'm like a prisoner in my own home with him. He's only almost 4 and the hardest part is the unknown of how much worse it's going to get. Last year at this time, I thought it can't get worse now I wish he was behaving like he did last year when it was managable. I'm the one who commented a while back on your post about there being a hypothetical magic pill to give them to cure the effects of the autism. I'm wondering if you've changed your mind/position on that post now?

Amber DBTD said...

No, I don't feel like I've changed my stance on that. I really don't feel that this has anything to do with the autism (though it is probably exacerbated by the autism), it really seems to be more of a neurological thing. The problem is, we can't pinpoint the issue, because as far as docs can tell, he isn't showing any seizure activity. It's something in his little head, but nobody has a clue what.

I'm sorry you are going through so much with your son. Is he your only child?