Previously on "The story of the beginning of Kevin's special brain powers":
Kevin - "Aaahh" shake shake shake
Sara - "OMG OMG OMG!" calls 911
Scene cuts to hospital parking lot where Sara has a break down then enters hospital.
Nurse - "Time for CT Scan!"
Doctor - "Results are in, you do have a brain, but there's something wrong with it and you have to be transfered to university hospital."
Kevin - "Ahhhh I'm having another seizure!"
Doctor - "Bring me insane amounts of Adavan stat!"
Kevin - "zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz"
Sara - "TAXI! Take my to university hospital."
Kevin - "zzzzzzzzzzzzzzzzzzzzzzzzzzzzz"
Neuro Resident - "It's not cancer, we think it's a cerebral AVM but need an MRI."
Kevin - "zzzzzzzzzzzzzzzzzzzzzzzzzzzzz"
Now let's continue the story.
Somewhere around noon, Kevin finally woke up. He was very groggy after being pumped full of drugs to stop the coming seizure. We sat and talked for a while and I told him that the doctors are almost positive that it's not cancer. He nodded his head and seemed to accept that.
Not having anything to eat since 5:00 the day before, Kevin told me he was hungry. I relayed this information to the nurse who asked for a tray of finger foods to be brought for Kevin. He started with the Cheerios. What you have to understand is that Kevin is left handed and the seizures effected the left side of his body and the IV was on his right wrist. So, eating was kind of hard for him. There were Cheerios everywhere! He finally let me put some muffin in his hand and managed to get that in his mouth. We were both laughing. No way were we even attempting that with liquids so I helped him drink some juice and milk. While he was eating, he again mentioned that it was coffee and muffin day for him at work and he was missing it. It's the little things that are so important.
Not only had Kevin not had anything to eat since the day before, but the last time he went to the bathroom was when the paramedics showed up. Stick an IV of fluids on him and he really had to pee. I went and told the nurse that Kevin needed to go to the bathroom and she came back with a urine bottle for him to use and told us to holler when he was done. Well, Kevin was sure he didn't need it and wanted to walk to the bathroom. I wouldn't let him (plus the IV was attached to the bed) and as a compromise allowed him to stand to use the bottle. He'll probably not be too impressed to read this (hi honey! I lurvs you!) but he couldn't even stand and ended up peeing, well, kind of on the floor, his gown and the chair. I sat him back down and went and told the nurse what happened. She had no problems cleaning him up and telling him that he shouldn't be up and about yet and to just lie down and take it easy. Nurses are great. And they're fast! The sheets were changed and his gown was changed and he was back in bed lickety split. And they just don't care about doing that stuff. It's all just part of the job. Please remember any nurses on nurses day.
We talked more and he again asked me "what if it's cancer" and I told him it wasn't and he asked "but, how do you know?" This was something that happened often that day and a couple of times the day after. At the time it had me really scared because I didn't know if this was going to be how it was for us now. Kevin with a really bad short term memory, unable to function to even go to the bathroom by himself. Each time he asked if it was cancer, he was on the verge of tears. And each time I told him the doctors said it's not cancer, he was visibly relieved. But each time he asked me, I wanted to dissolve into a pool of tears because it broke my heart to see him so scared.
An orderly finally came down to take Kevin to MRI. I walked through the halls with them in a daze. I was so tired. We got to MRI and there was a bit of confusion going on and got sent somewhere else and then back to MRI. I guess the orderly was just a really fast walker and got to MRI before the order did. I stood and waited with Kevin for a few minutes and I could tell he was scared. I asked him what was wrong and he said, again, "what if they find out it's cancer?" I told him again that the doctor's already know it's not cancer and we'll get to see for sure just what it is. And then he had to pee again but stayed in bed when he used the bottle this time.
When it was his turn, I decided not to go in. There was nowhere for me to sit and it was going to be loud so I went out to the waiting room. The MRI took about a half an hour and I stayed in my dozed state and kept myself from falling asleep. When he came back out, we went back to emergency where they told us that a bed was waiting for Kevin. He would be in the Neural Intensive Care Unit but it would be a while before he would get up there. While we were waiting, the neuro residents came back to do some more poking and prodding and testing. One of the question they asked Kevin (always they ask this question) was "do you know what day it is?" Kevin replied "yeah, it's coffee and muffin day". It was sad and funny at the same time. So sad because Kevin just wanted to be normal and to have his coffee and muffin day at work. So funny because of the concern on the residents' faces when he said it. Their concern turned to a smile when I told them what he meant.
Soon after the residents left, it was time for Kevin to go to his bed. We went up to the 7th floor. I know that floor very well now. They got him all settled in his bed and the nurses hooked him up to some oxygen for a while. It was around 3:30 at this time. I was basically going on three hours of sleep at that point. Kevin started dozing again and the neuro resident came back to see how he was doing. She told me the results of the MRI said he did indeed have a cerebral AVM and explained what that was to me. She took me to a meeting room while Kevin slept and showed me the MRI scans.
AVM stand for Arteriovenous Malformation and can happen anywhere in anyone's body. There is an estimated 10% of the population that has an AVM somewhere in their body and don't know it. The majority of the time (88% according to Wiki) it is only found out when there is an autopsy done at death (for unrelated causes). However, an AVM near the heart or in the brain or kidneys is very serious. They occur more commonly along the central nervous system and are found mostly in brains when they are serious.
When blood flows through your body, it goes away from the heart in arteries to deliver oxygen to your body through veins and travels back to the heart. The arteries pump the blood really fast - like a fire hose. The veins carry the blood at a slower pace - like a kitchen faucet. To compensate for the high pressure blood flow of the arteries to the low pressure blood flow of the veins, the arteries and veins are joined by capillaries other wise it would be like trying to run a fire hose through a kitchen faucet.
What happens in the case of an AVM, the capillaries did not form. The body needs to compensate somehow and so the veins stretch out and form a spaghetti like mass to slow down the flow of the blood but there is a bulb like area (which is the actual AVM itself) where the artery and vein meets.. All of this happens before a person is born while they are being formed. It is not genetic and can randomly happen to anyone (kind of like winning the lottery you think?). Most AVMs are two inches in size. Kevin's is five. When you include the spaghetti like blob of veins, he has a grapefruit sized growth in his head. Size matters and will be important later, but just keep in mind that his AVM is really big.
I learnt all of this in the meeting room with the nurse and got to see his scans. Someday, I will post them here. They're kind of interesting.
When I got back to the room, the nurse had Kevin awake and were doing his vitals again. When she left, I climbed in bed beside Kevin and we just lied there for a bit. He was off the oxygen at this point. We were all tired out and in a trance over physical and emotional exhaution. The nurse came over to me and told me that she heard I worked nights and didn't get much sleep. She suggested that I take a little snooze there with Kevin. I told her that I would be going home shortly now that Kevin was in a bed and we knew what was going on. She said she didn't want me driving in my state. I thought it was really sweet of her. I told her I didn't have a car and there was no way I would even dream of driving feeling like I did. So I tucked Kevin in and told him I would be back the next day shortly after noon. Once he was asleep, I got in a cab and went to my mom's house for some supper. She drove me home and the kids and I all piled into one bed and drifted off to sleep.
Part three where things just keep getting worse - coming some time in the future
Wow! I understand the feeling of the unknown. My heart ached for you while reading. Again the unknown. I also felt the huge sigh of relief knowing what it was! But, not in the clear! Looking forward to part three-sometime in the future. lol
ReplyDeleteNatasha