First of all, a HUGE thank you to everyone who emailed, called, sent flowers, and kept me entertained while I was incarcerated in the hospital. It is such a huge relief to be able to do things like shower and comb my hair again. Also, sleeping in my own bed is really, really nice. While my hospital bed wasn’t particularly bad, it just wasn’t mine.
For those of you who might be thinking about getting 29 electrodes superglued to your head on a lark, know this. I have had to treat my hair with baby oil and wash it 3 times and I am STILL pulling glue out of it. There have been times when Geoff, God bless him, has reached over and pulled a flake of glue out that I couldn’t see, just like the apes on National Geographic groom one another. That’s love, I tell you. The bonus? The glue looks a LOT like dandruff. Awesome. Thankfully, everyone in choir at church this morning was very understanding when I explained that I did not, in fact, have snow and/or dandruff in my hair.
In other news, I didn’t get either job that I interviewed for at Major Local Music School, however each person that I interviewed with did tell me that they wanted to encourage me to apply for other positions within the school. This is good, I think. So I will do that, and I will mention that I have met with both of them and see where that gets me. I REALLY want to work there. Please keep your fingers crossed for me.
Also, keep your eyes peeled here. We’re going to be adding a blogroll to the side of the page. There were so many fantastic suggestions emailed to me of stuff to read that we’re going to keep track of it in one place so that you all can share in the hilarity.
I just spoke with my neurologist and they’re going to let me go this afternoon. The preliminary results are that I didn’t have any outright seizures but that I had a scattering of Sharp Wave* activity. I have an appointment to follow up with her the week after next and she’ll have the final results then. There is a lot of data to process, so it takes a while to go over everything (EEG, Video, Audio, reports from the staff, etc.) I should know if there is any definitive diagnosis when I see her next, but for the moment I get to go home. They’re going to come and unhook me in a little while and then I can take a shower, wash my hair, and Geoff can come and get me.
*Sharp Waves: On an EEG, sharp waves are deviations from a normal brain wave activity and are distinguished by more sharply contoured waveforms of varying amplitude, or voltage. The duration of each sharp wave is 70 to 200 milliseconds. Spike waves, sharp waves, or distinct patterns of spike and sharp waves or spike and slow waves may be indicative of seizure activity.
This morning as I was in the hours between taking my morning meds and finally dropping off to sleep (total time awake almost 24 hours) a nice old man with a Southie accent arrived and delivered my flowers! Very exciting. They are from my Mom, Dad, Brother, and Sister. 😀
Sorry for the crappy cell photography. I tried to make up for it with artistic sounding titles. /CheTONGUEek
I suppose this is technically more like an extension of Day 3. My neuro came and visited me yesterday afternoon and basically said that my brain hasn’t been misbehaving in the expected ways. So, last night was sleep deprivation night. I woke up at 9:00am yesterday, napped off and on till noon, and then was up till, well, now. The goal is to provoke my brain to misbehave so we can catch it on film and then know what is really going on. I’ve had people wishing me “happy seizing” all night long.
I had no trouble staying awake and it’s only now, when my asthma has started acting up, that I’m starting to feel tired. I have breakfast and an asthma treatment to look forward to sometime in the next hour, and then I can probably sleep and hope that my brain short circuits in the appropriate way. By the way, the thing that triggered my asthma? The perfume of the lady that took my vital signs at 5:00something AM.
It’s raining and gross outside. Hopefully it’s a really good day for a nap and a seizure as well.
Well, apparently my brain is not performing as desired. (This is news?) I keep setting off alarms while awake and feeling more or less fine, but have only set off one alarm, that I remember, while asleep. I slept fitfully last night, though I did manage to make it to REM sleep. I had a dream in which the founder of the company that laid me off showed up. I have no earthly idea why, but he was there.
I slept a good portion of the day today. For some reason I was really tired. I know it’s noisy here and that I can’t sleep more than 4 hours at a shot, but I was just really groggy all this morning. One of the residents came in to see me and I know I talked to him but I don’t remember what I said. I think he’s coming back later, so I should find out.
Since you all have been so fantastic about sending me stuff, I thought I’d post it here. A photo of my helmet.
I took this:
last night when my new night nurse came on duty. She was highly amused by the fact that I took a photo of it and actually seemed to warm to me quite a bit. I was listening to MP4s sent to me by a friend from choir when she came in and when she found out I was singing in them she was very impressed and asked me all about them. I like her, I hope she comes back tonight.
Yesterday’s promised passel of med students never appeared, unless they snuck in while I was napping. I managed to get through the day yesterday without 1 full neuro exam, which is both frightening and amazing. I haven’t had one yet today either.
If you have a moment, send Geoff an email. He’s home with a vicious head cold and he’s losing his voice. He can’t come visit me till his fever goes down and he can’t really communicate via phone, so we’re texting and emailing.
I think that’s it for now. If something interesting happens, other than the constant beeping and groaning of machines, I’ll post it here.
I snapped this photo out the window of my room from my hospital bed. One of the techs who was attaching my 29 (I asked) leads to my head yesterday told me that this was the only monitoring room facing this way. Everybody else gets a view of the hospital. It looks cool at night with all of the buildings lit, but my phone doesn’t like low light photos, so you all get sunset instead.
It’s morning and I am awake for the moment. They come by to take my vitals every 4 hours, day or night, so it is impossible to get more than 4 hours of consecutive sleep here. I get it that it’s important for them to check that stuff, but sometimes one has to wonder if it wouldn’t be more productive to let me sleep for more than 4 hours at a shot as I’m here to be checked for seizures that I get in my sleep.
The good news is that, after reminding them that I needed my morning medication this morning, I did actually get breakfast. I’m sort of annoyed that I have to be on top of them about this stuff. Also, the nice lunch lady who takes your order just walked in to take mine and they STILL don’t have me in the system as a vegetarian. I don’t know who one has to kill to get a vegetarian meal around here, but I am so glad Geoff brought me food last night. It sounds like I am getting pasta for dinner tonight with no sauce. Seriously.
Today is med student day. I’ve already had visits from two doctors who have promised me more visits from a passel of med students who I have seen wandering up and down the halls like ducklings. I’m not sure how I feel about that as they’re all med students at my alma mater. Oh well, at least I don’t have to wear hospital clothing like all the other poor suckers here.
Thanks, everyone, for all of the links and such that you’ve sent me. Some of this stuff has been truly outstanding.
And so I’m here, at Boston Medical Center, and I’m finally all wired up. The nurse/phlebotomist with the Southie accent who just put in my IV just left and my nurse is coming by at some point to get me some food. I’m not entirely sure how many wires are GLUED to my head, but it’s north of 20.
Yes, that’s right, glued. The technician who was attaching them referred to the gluing part as being like, “a bad day at the nail salon” and she wasn’t kidding. I asked how they removed the glue and she said, which I suspected, acetone. I think I may have Geoff bring a bottle back with him when I get out of here since, apparently, getting all the glue off of one’s scalp takes “several washings.” Fun.
I supposed it would be rude of me not to tell you all about my helmet.
I’ll get a picture of it when I can, but right now, it is out of reach. Which is ironic as I am supposed to wear it AT ALL TIMES when on my feet and out of bed. This includes the 6 foot walk to the bathroom and also when using the shower. Mind you, I can’t actually shower as my head can’t get wet, I can only sponge bathe, but I have to sponge bathe with the helmet on. Seriously.
It’s a black hockey helmet.
You know, I could have sworn I had some dignity around here someplace. I have no idea where it went. Have you seen it?