At this point, none of us knew what was going on, and it was starting to get irritating. Please God, just let them know today what is wrong with me. I can't take this anymore.
That morning I had already been to Westmoreland Hospital, my PCP, and now on the way to Children's Hospital. I was getting sick of being around a bunch of people who DIDN'T know what was wrong with me. And being around sick people as well made me feel horrible and sickly.
We were told to go to the purple elevators on the second floor. Go past the silver elevators and enter by the musical mural on the wall. How do I remember that you ask? You'll find out. When we got signed in and everything, Dad realized we were not there to see a neurologist, but rather a neurosurgeon. That was a bit unnerving. And we were both wondering if he was going to be able to help me out at all.
The nurse who called me back was very friendly. She had blonde hair and was wearing a grey sweater. Not a typical scrub like everyone else. She explained to me that I needed to tell her and the Dr. everything that I was feeling. And so I went through my symptoms with her, and then she asked me to stand up, walk in a straight line. I did that fine. Then she asked me to close my eyes and stand with my hands in front of me, palms up. Dad said that she stood behind me waiting for me to fall backwards, which I didn't. I didn't have the typical symptoms of a neurological disorder. I would have if it would have lasted maybe a few days or weeks longer. I don't know how long it takes. But from what I've read about other people my age, I should be, in some way, mentally impaired.
While we waited for the doctor to come in, I realized that whatever the outcome, God was in control. He was putting me through this trial for a reason.
The twelfth year of my life was a great one for me spiritually. I rededicated my life to the Lord, learned a lot about complete surrender, and I actually was baptized that year. I didn't realize it then, but God was preparing me to depend on Him when I needed Him the most. And now was certainly the time. I said in the last post that I was in the midst of preparing for Bible quizzing, which was only a week and a half away. I was worried I that I wasn't going to be able to make it and let my team down. But God had other plans.
There was a knock on the door and Dr. Ian Pollock, the head of the neurosurgery department at Children's came in. He shook my father's hand, and then he shook mine. And then he got right to the point. He said I had a condition called hydrocephalus. Where the ventricles in the brain swell and cause inter-cranial pressure. Making it feel like your head is going to explode, and causing pressure on the back of my eyes. Hence the pressure on the optic nerves in my eyes.
Like I said before, I was clueless to what any of this meant. And I guess Dr. Pollock figured that out. He said "The ventricles in your brain are supposed to be the size of your pinky finger. Ellen's are the size of my fists." Oh boy. That explains a lot. So he said "Let me take you back and show you what the films from the MRI look like. It'll give you a better perspective." And this is what we saw (NOTE: These are not the actual images of my brain, although I do have the original films though from my first MRI. Even though they technically aren't allowed to give them to us, they did.)
 |
| What my brain looked like |
 | |||||
| What a normal brain looks like |
Obviously there is something wrong there. And if you think that doesn't look painful, look again. My brain ended up looking like that first picture for about 3 years, but I will get to that later.
So what is the cure? If you read part one, I explained the process of a third ventriculostomy. They drill a hole in your skull, stick an endoscope down in there, and poke a hole through the third ventricle. That was the option Dr. Pollock gave me. There also was a second. I could have a more invasive surgery and have a shunt put in, which is basically a drain with a tube attached that leads to another part of your body, typically the stomach. That requires at least 4 incisions. Two on the head, one on the neck, and at least one on the stomach. That sounded terrifying. And since I was 12, and this shouldn't have happened to me, he recommended the first option. It typically worked and I wouldn't have to worry about the tube getting infected and all the revisions that could come about through that process. (horrifying, just look it up on youtube)
I was relieved to finally have a problem and a solution. And the doctor said he wanted to do it as soon as possible. I was ok with that. God was giving me overwhelming peace that day. I remained calm, and I had a smile on as usual. The dr. said he would never have guessed I was in so much pain. And not many other people that I was around a lot even knew.
So he called out to his nurse/secretary and asked when the next available date for surgery he had.
Then came the real shock.
TOMORROW MORNING she said.
Dad was like "TOMORROW??" I was just like "Fantastic. The sooner the better." Not really, I honestly don't remember what I thought. Everything that week had happened so fast. I was tired. I didn't feel good. I just wanted to go home and sleep.
So then the next process of calling Mother and telling her that he could operate tomorrow...and tell her everything we'd just found out. I can remember the conversation going something like this:
Dad: Hi.
Mom: What's going on? What did you find out?
Dad: They want to do surgery tomorrow.
Mom: TOMORROW!?? What's wrong???
Dad: I'll tell you about it when we get home..is tomorrow ok?
Mom: *flustered and nervous* I guess...I mean, does she have to?
Dad: Yes. So there's nothing going on?
Mom: No.
Dad: Ok.
Mom: Well what's wrong????
Dad: She has something called hydrocephalus. The ventricles in her brain are supposed to be the size of your pinky finger, and hers are the size of fists.
Mom: *in shock* wow.
Dad: Ok, I gotta go, see you soon.
haha...so yeah, that's what I remember.
He scheduled me and said I needed to go for some pre-op bloodwork downstairs. So we went downstairs and I got poked again for about the third time that day. (not to mention I have horrible veins and they always miss the first time) So we finished that and then we headed home. Since it was Wednesday night, and by now it was about 6pm, I think we drove straight to church.
Once we got there, everything started to hit me, hard. That day, I had gone through a 45 minute MRI, had a shock that I might have a brain tumor, been rushed from one place to the next, visited an neurosurgeon, had blood work for the first time in my life, not to mention being poked and prodded at a dozen times, I was told what was wrong with me, I was told I was going into surgery the next morning, and not to mention I don't think I had eaten anything that day at all. I was exhausted, still in pain, and there was nothing I wanted to do except sleep.
I can remember walking into my awana class and everyone asking me what was going on. My class prayed for me. And we studied some for Bible quizzing. Then while everyone else went to gametime, Pastor Hipple and Mr. Parker, and Mr. McCoy and some of the other people at church gathered around me in a room and prayed. I never hardly ever went to gametime since whenever I would get my heart pumping, my head would start pounding. I usually sat in the kitchen and watched. So it wasn't a big deal at all to me.
So the night ended, and we went home and I finally got to sleep. As soon as my head hit the pillow, I was out. And I wasn't waking up until I had to. The next day my life would be changed. I was hoping for instant relief. And I had no clue how much pain was yet to come. I was just thankful to finally have an answer.
...to be continued in part 5
No comments:
Post a Comment