Monday, August 4, 2008

when in rome

You might as well burrow down and get comfy...this is gonna be a long one. For those of you who are way out of the loop, I spent the last two weeks in the hospital while they ran a seizure study on me. Basically the gist of it was this: They tied me to a padded bed and took me off my medicine. They hooked me up to an EEG machine and videotaped me 24 hours a day so they could capture 3-5 seizures and tell me exactly what was going on inside my brain during my episodes. I was discharged from the Neuro Acute Care center at the U of U on Friday after 10 days. Right now I sit at my mother's house, propped up by pillows and dying to dive back into Breaking Dawn, but taking a moment to update everyone on my status. I am one lucky girl...that's all I have to say! I cannot begin to express my gratitude for the love and concern sooooo many people have shown our little family. I really am blessed.

This post will likely be a little scattered as my head is not fully back-to-normal yet. I feel very bare with me. First, I would like to share some things I will never again take for granted:
  1. the ability to cuddle, spoon, snuggle, and simply touch my husband, especially at bedtime
  2. DVR
  3. the ability to pee without notifying anyone
  4. the ability to get out of bed
  5. the ability to leave a room
  6. showers
  7. clean hair
  8. the absense of IV's and 40 different wires
  9. a lot of other stuff
I was supposed to check into the hospital on Monday July 21st, but they didn't have a bed for me. (I still don't understand why.) So, we decided to go on a way fun date instead. We went to the new movie theater in O-Town and ate our dinner on our lap whilst watching 3 hours of Batman. Then we went to my MIL's and I savored my last shower for a long while. Tuesday morning we arrived at the hospital at 10 am and were interviewed by Miss Lori, the nurse practitioner. Two hours later we began the process of measuring my head, drawing all over it with a red marker, scrubbing it clean, and then gluing, yes, gluing (with super glue), electrodes to my head. This is my head/me right before they let me take a shower on day 6. And no, those aren't zits, they're sores.

Two more hours and a lunch later, we made our way over to the Neuro Acute care center...that means serious business. Around 5 pm we finally got all of my electrodes hooked up, my IV's plugged in etc. I've never been so exhausted in my life. I had the cutest nurse that night named Mildred. She is from Kenya and she has the prettiest accent and the cutest black, curly fro ever. I want Bostyn's hair to look just like hers. Anyway, they forgot to bring me dinner that night and cute little Milly, as I called her, kicked some serious butt and got me some food and then brought me snacks. We were so tired that we went to bed at 10:00. I know! Unheard of.

The days following are more or less a blur. My amazing boss was sweet enough to stop by and see me at the hospital on Wednesday before he ran the Pioneer Day marathon. He wanted to make sure I wasn't in Wendover. I had so many fun visitors and I cannot begin to describe how grateful I am to all of you who came to visit. It made my days fly by and it was so much fun to see everyone.

My brothers and sisters came down, of course, and brought my favorite little people. My niece McKahl even came to see me on her birthday!! She is 5 going on 15. I was a bit worried that I'd scare my nieces, but after a while they got used to me, and Miley even snuggled me for about an hour! They also brought treats and treasured reading material.

Our friends were sooooo supportive. Moto (twice) and Jaclyn came bearing "Dove" chocolate and a sexy balloon my mom didn't fully grasp. Oh, mom. KC, Jules, and Kyla also came to see me. Kyla is so dang cute it should be outlawed, and I'm proud to say she was a huge fan of me, even in my scariness. Colton and Mel came, twice! Randy and Shanda came and even my long-lost Wilson came when I called and told him I was there.

My family also came...Grandma and Grandpa came several times, and so did my aunt Carrie, bearing presents each time. Jill brought Jack and Callie too, even after she sent me the most beautiful flowers!
I was known as the spoiled girl on the floor because the next day I got MORE beautiful flowers from my uncle Donnie and aunt Connie.
THEN they came up to see me and brought me Volumes One AND Two of Discourses of President Hinckley. Talk about great gifts!! Their son, my cousin, Mark, was sweet enough to call and check on me and offered to come visit...but I wouldn't let him because he has a fainting problem when dealing with anything medical. (My other cousin Tyler called too, as he is out of state. To my other nine cousins, especially Jake...YOU SUCK!! A LOT! See if I ever call to check on you again! Geeze!! I should have my lesson learned by now...being the only girl in a family full of boys, but still stings.)

Anyway, between visitors we kept ourselves busy by scrapbooking...

playing 21, UNO attack!, Pictionary (see below),

"Chelsea's Little Nugget, Chuey"

"Flame Thrower" and "Britney Spears" Note her half bald head.

watching many movies, and reading many magazines and books. During my 10 day stay I read the following books, which I will hop up on a soapbox to review:
  • The Last Lecture: Good. Not Great. I know I shouldn't criticize a dying man, but must he be so arrogant? It really put me off...
  • The Mermaid Chair: Eh. It was not very inspiring or uplifting as I like my fiction to be
  • Love is a Verb: Very cute.
  • Emma: 2 million stars. Superb. In. Spire. Ing. I. Heart. Emma. Now, I know I'm a little bias because my girl Anita wrote it...but seriously, it was so good.

I've always been a huge Emma fan. When I was in Junior High and High School, the only thing that got me through was seminary. I looooooooooooooooved seminary. I don't care if that makes me a dork. I was on seminary council and it was my life. My first class was in 9th grade and it was on the D&C. We learned a lot about Joseph and Emma. I was first intrigued when I learned they were predestined. As I studied them, their lives, their relationship, their trials, their mistakes, I really felt so strengthened by their example. It was about then that I was having a really hard time with life, and I looked to Emma's example more times than I can count for strength and inspiration. I just knew that if Emma could endure her trials, I certainly could endure mine. She's always been sort of a guardian angel of mine I think. I wanted to name my little girl Emma sooooo bad and I was heartbroken when Ross and Rachel from Friends named their daughter Emma and then so did everyone in the world. It cheapened it.

Emma Smith isn't spoken about a lot in our church, and when she is, she sometimes gets a bad rap. To those people who think Emma fell, I can testify to you that I know she did not. She may have been confused after Joseph's death...a huge trial in a string of hardships, and her heart may have been broken, but I know without a doubt in my heart or my mind that her testimony of the restored Gospel, the teachings of Joseph, and the Savior never, ever faltered. I've prayed about it many times, and the Spirit has told me so. Emma remained an elect lady, all of her life. As I read her story in the hospital, it gave me strength again, just as it has many times before and will many times in the future. Emma's life is a true testament that with God, all things are possible.

I can't remember which book it was, but one of the above books made a profound statement: "Life isn't about waiting out the storm, it's about learning to dance in the rain." I loved that. Life really is about learning to dance in the rain. It was so easy to dance in the rain with the support of so many loved ones. The staff made it easier too. There wasn't one nurse (that I had, anyway) who wasn't as sweet as could be. My favorite was Trevan. He really made the extra effort checking on me, bringing us snacks, chatting with us etc. and the three of us got to be dear friends. He also held my hand while I had a seizure...that meant a lot. I'm hoping he'll let me cook him dinner someday. I also liked Kaye, Lori, and the technicians Abbi and Spencer...they comforted my madre when I had two pretty bad seizures, and they made the best turbans.

I went eight days without having a seizure. Not even the mini ones (called partial complex seizures) that I have sometimes multiple times a day! Those ones are the scariest for me, because I am fully aware of what's happening the whole time, and they can last up to 3 minutes. It feels like my brain unplugs from my body and can't send signals to any of my body parts. I hate them! Anyway, usually I have at least one a day, but I only had one in the 10 days in the hospital. It was on day two when I wasn't even fully off my medications. That's the one Trevan held my hand for.

I thought I would feel FABULOUS off of my medicine, but wouldn't you know it...I went through withdrawals. I had a constant headache and was pretty nauseous...but boy did I have a lot of energy and a clear head! My mom even said my speech was clearer.

On day 7 we started depriving me of sleep since that's a MAJOR cause for seizures. On day 9 I told my mom to go get some lunch or something and leave me by myself for a while. (Spencer had to go back to work on day 7) I thought maybe I was being polite and not having them while people were in the room! It worked. Sadly, the nursing staff on at that point wasn't stellar. Spencer called me and when I didn't answer, he called the hospital and made them send someone to check on took a while because I'd fully regained consciousness by the time they got there and was crying to Spence on the phone. Holly wasn't pleased either. So, I calmed down and was about to sleep it off, when round two started. I guess the second one was pretty bad. I ate about half my cheek (it's still swollen!) and immediately started vomiting. I don't really remember the rest of the night after feels like a bad nightmare. I just remember my mom holding my head over a throw-up bucket and throwing up black stuff...trying to not get my chin in it but being too weak. I guess I was unable to talk...because this happened:

I found that today but I don't remember it. Sad...I guess I couldn't speak for a long time and was freaking out. I also remember begging for anti-nausea medicine in a not-very-nice manner, and grabbing the vomit vacuum out of the aide's hands and suctioning myself because I couldn't breathe...sometimes I think I'm kinda mean when delirious. (One time, at the ER a nurse asked Spencer if I was a stay-at-home wife, not mom, wife, which would mean I just sat home and looked cute? Anyway, he didn't want to bother explaining my job to her so he just said yes. Apparently I woke from the crypt and was like, "I HAVE my degree and I am USING IT!" Embarrassing.) My dad came apparently, but I don't remember that at all...which is unfortunate because apparently he and Spence gave me a beautiful blessing. They let my mom AND Spencer stay the night because they were kinda nervous about how sick I was...and Holly was freaking out. Poor mom....Oh, another point of interest: I also remember dreaming that they stripped me down to wash the vomit off of me in my bed...aka ON CAMERA. The next morning I was horrified to see the wipes and wash by the bed and realize it wasn't a dream. Several nurses and techs saw the twins and my Britney. :(

Anyway, that night they put me back on my full medication because another seizure would've been too hard on my body. The tech told my mom that some people die from the kinds of seizures I have. Thanks!! I'm sure that was comforting!! Anyway the next day I woke up still dazed and they used a whole bottle of nail polish remover to dislodge the electrodes from my sore head, while mom and Spence packed up the room, and I took a shower and was discharged.

I've spent the past two days at Holly's house reading, or rather devouring, Breaking Dawn. I'm feeling much better. Just sleepy and weak. It was good to have Belle back though. She's so therapeutic for me...I don't know what I'd do without her. It's good to have my mac back too. I'm back at work today. My inbox wasn't THAT out of control...but the COA sure does need me! ;) It's good to be needed.

Tonight is my first night in my own bed in 16 days. I can't wait! It's been hard to get used to sleeping without the beeping of machines, the glow of my brain waves, the buzzing of the seizure alarm, and the weird voice in my head wishing it was mine so that I could go home. It's been nice to not get woken up every four hours and have my vitals taken though. But I do miss my friends. ;)

The doctors have about 10 days worth of brain waves to sift through...but he said I may be a candidate for brain surgery! We'll know more after our follow up on the 21st. I still have to have a few more tests, but they are all outpatient nothing as intense.

In the meantime, I can't wait to go home and scrapbook, make some cakes, and most of all...finish my book. (I am a woman obsessed!) Thank you to everyone who was thinking about me, praying for me, and just loving me. It really was felt. I am so blessed to have so many wonderful people in my life. I love you all!


d doggs said...

So explain to me (and everyone else on this blog) what the brain surgery would entail exactly. This isn't like a frontal lobotomy least I hope not?!


PS I just got to the part where she is drinking the blood MUHAHAHAGA! Hopefully your past that part so I didn't give anything away!!


Southams said...

I'm so glad you're back! I was so happy to see you yesterday. You are amazing!

Natalie said...

Oh honey -- i am so sorry you had to go through all this!!

You are such a thoughtful person to do what you are doing for the sake of research though. I mean, it will help you and so many others. A family friend of ours just started having seizures -- she had one in 2003 and another one a week ago. So she's now starting the process of going to doctors and figuring out what's really happening.

You're going to help so many people by letting the doctors study you!

Erin said...

jaclyn, as in my sis, jaclyn? i certainly hope so. i thought of you often and have been waiting for an update. i think you should frame the britney pictionary. glad you're home!!

Julie and KC said...


I'm glad that your finally home! When I had Kyla we were in the hospital for a couple of days and we were both going crazy. Nutzo, big time. I hope you have good news soon!! Love