I seriously had absolutely no idea what to expect and to be quite honest, I was terrified. But at the same time, I think my excitement out-weighed any of the negative stuff. It was 10 years in the making. God had lead me to this place. He put me on this path. Some may look at my story and think that deep brain stimulation is a drastic step and that's OK, but I know that for me, it is not. I have expended all other options.
God lead me to the coolest, most confident, and definitely the best neurosurgeon for me, Dr. K. His personality and mine meshed instantly. When I first started having problems walking and first started seeing doctors about it, I was 25 years old and had the mentality that doctors knew everything. They were the ultimate authority in their field and I was a dumb 25 year old who knew nothing but what I saw on TV. Fast forward 10 years and I'm not that same naïve 25 year old who thought that doctors knew everything and I knew nothing. I am now a 35 year old who knows why patients are called patients (because we need patience to survive!) and why it's called "practicing medicine" (because that's what doctors are doing - practicing!). Yes, of course, there are some things that are black and white: you have a bad appendix, it needs to come out and you'll be OK, but I've realized in matters of the brain, it's a whole different ball game. There are so many things doctors have yet to discover when it comes to the brain and yet, there are things that they have discovered and for those things, I'm eternally grateful! Dr. K. is one of those doctors who have discovered things and perfected treatments/surgeries. Under his hands, I felt as safe as I possibly could.
So, back to February 23, 2016. It started early. I had to be at Vanderbilt at 9:30am for an 11:30am surgery. Mom and I left at 8am because we gain an hour going to Nashville. It was a peaceful drive. I had Facebook as well as text messages coming in wishing me well and people telling me they were praying for me. About an hour or so out, I put a Amy Grant hymns CD in and that calmed me down considerably. I knew people all over were praying for me and I prayed for myself as well, but sometimes, it's best to just let others pray for you. So, I did. The one thing I did pray about for myself was that I wouldn't die. I know it sounds bad and selfish, but I didn't want to die. I knew everyone had me covered on all the other prayers, so that's what I prayed for myself. I'm only human!
Mom and I arrived right on time. I went to admitting and was told to fill out this one page form.
We laughed because years earlier during my shunt surgery, she comes into my hospital room with all of these nativity sets that she had bought in the Vanderbilt gift shop. My mom can shop any and every where!
I was given a beeper to hold onto.
When it buzzed it was time to get the party started.
I was taken to a holding area and had to change into the lovely Bair Hugger gown and bright yellow "fall risk" socks.
I had other nurses and doctors come by and check on me. I told one of the nurses that one of my co-workers (yes, Austin, you!) suggested that I get a selfie in the OR. To which the nurse said, "Oh, Dr. K.'s cool like that. I bet if you ask him, he'll do it." I was NOT expecting that answer!! :)
A little while later, Dr. K. came by. I was actually stunned by that. I wasn't expecting him to as I thought he would just send his residents, but that wasn't the case. He brought by his right-hand nurse, Sheila, and introduced us. He asked if it would be OK to have a team of surgeons from Toledo, OH observe my surgery. I said that would be fine. He said my case was unique and he thought these surgeons could learn a lot. He once again apologized for my hair. He was telling everyone around that I had had this beautiful long curly hair. Sheila said she'd be shaving the hair that did manage to grow within the week, off again and asked if I wanted the bowl cut or the complete shave. I went with the complete shave. Dr. K. and his staff were surprised at how quickly my hair had grown in just a week and Dr. K. said I'd have no problem growing it back again.
After Dr. K. came by, things started to move pretty fast. I met the anesthesiology team. Part of that team was the most awesome nurse anesthetist. But for the life of me, I can't remember his name. I think it was Jason, so I'll go with that for the purpose of this blog. Seriously though, he was the best. I learned on our ride to the OR that he was originally born in South Korea, but was adopted by a couple who lived in Denver, CO. He spent his first few months there before moving to Franklin, TN where his Mom's family is from. So, he's basically from Tennessee. :) He went to school in New Orleans, but eventually made his way back to TN and Vanderbilt for work. I love hearing people's stories! You'll find out more about Jason later.
Jason rolled me into the OR where I met a bunch of other people. I told Mom later that I thought I counted 10 people. I was off by half! Dr. K. told me the next day that there were actually 20 people in the OR. Jason and his team got me all set up on the OR table which was actually kind of comfortable. It was kind of like a recliner. I'm not making this up. To get my mind off of things, Jason started talking to me again. When he and the others found out I worked for HGTV and Food Network and all the other networks, well, they were kind of impressed, It turns out that Jason and his wife were oh-so-close to being on the HGTV show, Listed Sisters. They had the sisters and a producer out to their house, but it turns out their house was too nice to use. Jason said he and his wife have 3 boys and they need a lot more room then their current house provides. Anyway, as Jason and his team were getting me ready, he said that they were all there to serve me. That was kind of nice, I just wish it weren't for brain surgery!
After Jason and his team were done, Sheila came in. She told me later that her nickname was Sarg. She got my head all ready to be operated on. The first part, I have to admit was thoroughly enjoying, almost like getting a massage. I'm not kidding either. She first buzzed ALL the hair off my head and then she washed my head in betadine to where everyone in the room said my head was bright orange. I said at least I'm from Knoxville where orange (and white) are the accepted colors and everyone laughed. Next, Jason said he was going to give me some juice to take the edge off of what was happening next. I had to be awake for the whole surgery, but this would calm me down. What was next was the actual drilling into my skull. First they numbed my skull with lidocaine and then the drilling began. It actually wasn't all that bad. The only thing that bothered me was the noise. It was extremely loud, but it only lasted 30 seconds for each hole. It was after this, that I asked Dr. K. about the selfie. He was all for it and asked one of the visiting doctors to capture it on his phone and this is what I got:
I can't believe, I'm actually smiling, but I am. That's Dr. K. and his nurse, Sheila.
It somewhat amazes me that I'm able to write this blog post like I am and at the same time know that what I'm writing actually happened to me.
Anyway, back to the surgery. After all the drilling and making sure I was still OK (and I was - this is even amazing to me!), it was time for the electrodes. This stuff fascinates and enthralls me. It really, really does! I should also mention at this point that my Vandy neurologist (not to be confused with my Knoxville neurologist!) and his resident were there in surgery with me. They were asking me questions and telling me to repeat phrases like, "It's sunny outside." Once Dr. K. got the electrodes in they were listening to my brain. Literally listening. They could hear things! Dr. Chris (his first name, I can't remember his last name) was helping in this process. Dr. K. later told me that he and Dr. Chris have been working side-by-side for 14 years now. Dr. K. does the probing and Dr. Chris does the administering of the electricity. Not only could they hear things, they could read things. They did assure me that they couldn't read my brain like what I was thinking, but they could read it for their purposes. This made me laugh! All I could hear of my brain was like a swooshing sound, but apparently they got something out of that. I could hear Dr. K. say that he needed to go deeper in my brain or he needed to pull out or to go to this side or that. When my left hand went numb/weak, I told them that. Dr. Chris, Dr. K and Dr. T and Dr. T's resident sprang into action. It freaked me out that I couldn't feel my left hand. And actually, as I learned later, I can feel everything, it's just that I can't control the actions of my left hand. I heard the doctors talking about it in surgery - that they had to move to a different spot and things of that nature. Dr. K. had to reposition the probe and Dr. Chris would give it "juice". When he did that, my hand was not my own! It curled up or straightened out depending on what Dr. Chris told it to do. He also did the same thing with my fingers. It was funny, because the very first time it happened I exclaimed, "I'm not doing that!" to which Dr. Chris smiled and said, "I know." It was the coolest, freakiest, wildest thing ever. This was like the greatest movie ever and it was actually happening to me.
I do remember at one point saying that this surgery was so much more interesting than anything on TV and it gave everyone in the room a huge laugh. Then Dr. K. said that they don't gossip and don't do any of the other shenanigans that are portrayed on TV. Before Jason put me to sleep so Dr. K. could finish the surgery (the part he didn't need me awake for), Dr. K. asked me for my e-mail address to send the picture to. It amazed me that I could remember it. :) The next thing I remember is waking up in the recovery room.
Dr. K. gave me a souvenir - the 3D printed helmet I wore during the surgery:
I think it's pretty cool!
During the time I was out, I had a CT scan and it showed that I had no bleeding in the brain. Dr. K. later would say it looked pristine. He did say that the cause for my left hand weakness is because of irritation/swelling at the initial site of entry for the probe. Once that irritation/swelling goes down, my hand should be fine. He said he couldn't tell if that would be a day, two weeks or longer. Also, he said I may need physical therapy for it. Dr. K. said he saw an air bubble in my brain, which is caused by opening the brain up. So now, I'm not only screwed up in the head, I'm an airhead. ;) All this to explain what happened next.
The night in the hospital started off well enough. I wasn't in too much pain.
I ate some dinner (my first meal all day!). Mom and I started to watch Chicago Med. Yes. even in the middle of my own medical drama, I still like to watch them on TV! About half way through Chicago Med, my headache went from barely there (about a 1 or 2) to I felt like I was going to die. I told the nurse it was at a 12 on a 10 point scale. Dr. K. later said that it was the air bubble that caused these massive headaches. The nurse said that she had orders to either give me this one pain medication (I can't remember what it was) or Morphine depending on my pain scale. I asked which was more potent. Morphine it was. Morphine, my friends, when used like it's supposed to be used, is Heaven sent!!!!! Oh my gosh. I never knew it could take pain away that quickly, but it did the trick. I could no longer watch the rest of Chicago Med though. I just was not feeling all that great. By the middle of the night, I literally wanted to die, I was in so much pain. I was being given morphine every two hours, but the pain just kept getting worse. It turns out having brain surgery does lead to EXCRUTIATING pain. Seriously, I've never experienced pain like that. Grant it, I've never given birth, but it did feel like my head was literally splitting in half. It gives new meaning to the phrase "splitting headache"! I got morphine, but it didn't even touch my pain. So the nurses got permission to give me a double dose. Still nothing. Finally, they got an order to also give me hydrocodone. That did the trick. But then I was nauseous. Saltine crackers, ginger-ale and banana flavored popsicles along with the meds, a wet wash rag on my head and Mom's hand to hold got me through the night. I seriously never, ever want to relive that night.
There were two moments from that night though that I would like to remember. The first was when my youngest brother, Steven called. There are 11 years between us, but he's the one that can always make me laugh. I had just gotten my first dose of morphine and I asked him to tell me something to make me laugh. He told me a story that had happened at work. As Steven went on with this story, I laughed so hard. I told him I couldn't tell if it was the morphine kicking in or his story, or both, but I was laughing and that was good! The second moment was when my nurse told me about her splitting her pants open. There was some serious laughter at that story too! Sometimes laughter is the best medicine as my friend, Kristen told me in a card.
Night turned into day and I was OK if I had morphine, but I was still very nauseous. I took Zofran and that worked, until I got out of bed. I guess being upright didn't suit me too well. I puked everything I had to eat the night before right out of my system. It was not a pretty sight. All that day I debated on whether I should go home or stay another night. I saw Dr. T. (the neurologist), whom mom and I joked was no help. He couldn't discharge me or give me meds. He was a good sport about it though and laughed along with us. It was actually Dr. K. who was the deciding factor. When he came and saw me, he did give me the option of staying another night, but in the end, I decided to go home. So, with a puke bucket between my knees, Mom and I headed home around 2:30pm. We made it back to Knoxville around 6pm EST. Although Knoxville and Nashville are only 2 and 1/2 hours apart, in Knoxville we are on eastern time and Nashville is on central time. I made it the car ride home and that night without puking! Thank the Lord for the little things in life!
I think that's enough for this post. But I can't close without giving a HUGE shout-out to my mom. She is incredible. She's the one you want with you when you are sick. No offense, Dad! Dad is awesome too, but Mom is the one I want to talk about now. She knows the right words to say, when to hold my hand, when to get the nurse, when to let me sleep. She's just the best and I'm forever in debt to her. She's been with me on this "adventure" since the very beginning, taking me place to place, staying with me in the hospital. Thank you doesn't seem to be enough to say, so I'll just say, I love you, Mom!
I'll update later about the convalescing - I know you're waiting with bated breath to hear about that! Or maybe I'll just skip over all of that and talk about the last surgery. Who knows! My next surgery is Monday, February 29. It's to insert the battery (pacemaker like device) under my collar bone and hook it up to the electrode wires in my brain. It's done under general anesthesia and is an out-patient procedure. Please pray that all goes well. Please also pray that I will get full function of my left hand back. It's highly annoying to not have it working! And, just in case you're wondering, yes, I wrote all of this with just my right hand. I know you're impressed. ;)