I have to confess though that I was growing weary. I had a good cry Sunday night after I was in bed. I was getting discouraged because of my hand. I had gone into these surgeries confident of what I was doing and when the unexpected happened (the weakness in my left hand), I grew discouraged and fearful that I had made the wrong decision. I mean, I could live with having to walk with a walker, but now my hand? It was a little too much. I didn't really even have the energy or (if I'm being completely honest) the desire to pray about it. I was doubting all my decisions.
Monday morning I was melancholy and not as chipper as I had been for the first two surgeries. Dad said a prayer with me and Mom before Mom and I left for Nashville. He asked that I would be more encouraged coming home and that everything would go well. Then Mom and I were off. It was a quiet ride to Nashville. I was not as sure of myself this time. I got some texts from friends and those cheered me up. But as much as those cheered me up, it was still hard for me to be happy. I got 2 calls from my insurance company. One was an automated call saying they didn't have all the paperwork for my claim yet. Well, there wasn't anything I could do about that. I had submitted all the forms I was supposed to and as Mom commented, "your surgeries aren't even over with yet!" The second was from a real person who was asking how I was doing. I managed to hide my discouragement.
We got to Vanderbilt early this time, but by the time we got inside we were a little late. It didn't matter though because we still had to wait. Finally Mom and I were taken to a holding room. I had to get changed into a lovely Bair hugger gown again. I almost got out of wearing the yellow "fall risk" socks, but I opened my big mouth! The socks they had for me were gray. I said, "Oh wow, I don't have to wear the bright yellow ones anymore!" And then the guy who brought be back to the room said, "Oh, I guess we should follow protocol. I'll go get the yellow ones." While he was getting them, I had to once again prove I was not pregnant. I gave him what he wanted and guess what?! I'm NOT pregnant! I'm so glad we got that cleared up. ;)
Not my finest hour, but somehow I still managed a smile. :)
They took my temperature and I was freezing. I knew I was cold, but not 95 or 96 degrees cold! I had to get warm under the Bair hugger. I'm telling you, after I lost all my weight a few years ago, I became cold natured. Now losing my hair too, I'm super cold natured!!! After I got warm, my nurse, Alice, came in. She was very interested in my case. She asked me what dystonia did to me. Come to find out her 25-year-old daughter is having medical issues that doctors have been unable to diagnosis yet and some of her symptoms are like mine.
One thing I learned, if a nurse asks you if they can put an IV in your hand, you should emphatically say NO!!! Alice tried to put one in my hand and it was the most painful thing ever. I guess my vein rolled too and that didn't help. There was blood everywhere.
She finally gave up on it. I really thought I was going to faint. I have no problems looking at my IV's once they are already in me, but getting them in, I always, always have to look away. She then decided to try and get one in my left arm and that IV I didn't even feel going in! Praise Jesus!
Once the IV was in, I just had to wait until Dr. K. was done with the patient in front of me. This is when I started thinking about things again. I asked Mom if it was weird that I was more scared about this surgery where I would be asleep under general anesthesia then I was about the actual deep brain stimulation surgery where I was awake. She wanted to know why. It was because of the general anesthesia. I have this fear that I'll never wake up from it. I know it's a dumb fear, but it's a fear nonetheless. To pass the time, I took a picture of my view.
For my co-workers and those that know me really well, you know how easy a song gets stuck in my head. Well that was a God-send because I had all of these hymns and Christian songs rolling around in my head. That brought me great comfort.
A funny thing I overhead when I was in the holding room was someone in the hall said, "Does she need Dr. Pepper? Dr. Pepper, right?" My first thought was that someone had come out of surgery and could now have something to eat and drink and was asking for a Dr. Pepper. But then it became abundantly clear that there was an actual doctor there with the last name of Pepper. This made me laugh so hard!!
Dr. K. came in and spoke with me and Mom before the surgery. Oh how I love this doctor. He's kind and compassionate. He's smart and confident. He knows what he is doing. He asked how the week had gone. I told him I puked again a couple of days after coming home and just had to deal with nausea. He was so sorry that I had felt that way. He checked my hand and said that it was doing great. I was (and am) able to do more with it now than initially. He wrote a script for physical therapy, but said that within 2-3 weeks it should be back close to normal. He told Mom and me that I should get a Chinese rolling ball. He said if he had anymore, he would just give me one, but he had run out. He said that by me rolling it in my hand, it would help to get function back in my hand. Mom later told me that when I was in recovery, Dr. K. came out to tell her how everything went and he actually brought his iPad out and got on Amazon and showed Mom what he was talking about in regards to the Chinese rolling ball. What kind of surgeon does that?!! The kind that's compassionate. I don't know if Dr. K. is a Christian, but I'd like to think he is. He shows Jesus in everything he does. Even if I don't get the Chinese rolling ball, he said a tennis ball or any other small ball or stress reliever ball would do. I just need something that I can roll around in my hand to regain function of it.
This will do for now!
I asked when I could drive. Dr. K. said next week. I guess that also depends on how my hand is doing. I asked when I could go back to work. He initially said next week, but then changed it to April 1. This is only because of my hand issue. Although I'm typing this blog with one hand, I think it would be extremely hard to work a full day and only have use of one hand. (Side note - Dad was home for lunch when I was typing some of this and he said, "You type faster with one hand than I do with two!") Dr. K. filled out my "Return to Work" document with the date of April 1, 2016 as my return. He said that if my hand was better before that, just to call him and he would change the date on that paperwork. I was originally hoping to go back to work on March 16. That may still happen. I'll just have to see. So, if any of my co-workers (or bosses) are reading this post - I'm sorry that I may be out longer than I had initially expected!! Dr. K. marked me up for surgery and said that there would be two more incisions in my skull and one right under my collarbone. I asked if I would have to lose my hair again. He said he didn't think so, or not much of it anyway.
Dr. K.'s right-hand nurse, Cheri (or is it Sherry? I accidentally called her Sheila in my last post!) came in after Dr. K. and said hi. She said I shouldn't eat any cheeseburgers, fatty foods or spicy food that day after the surgery. It's ironic that she mention that because in the past week all I've wanted to eat is spicy food!! The Medtronic guy came in after Cheri and introduced himself. He said he was in my last surgery, but I didn't remember him. Medtronic is the company that makes the DBS device. The Medtronic guy's name is Peyton, so I of course had to ask if he was from Tennessee and if he was Peyton Manning's age or if he was named after him. He said he was a few years older than Peyton Manning and that he's actually from Texas. Peyton was his grandmother's maiden name and that's how he got his name. He said he's lived in Tennessee now for 20+ years and when he first moved here, Peyton was in his heyday at the University of Tennessee. He had NO idea how popular his name was here in TN. :) He answered questions Mom and I had and told Mom he would bring my remote control out to her while I was recovering.
Mom came back and sat with me. And she took a picture (because I asked her to) of my newest battle wounds.:
For some reason my heart rate was high, so the recovery room nurse was monitoring that, but I did get to eat saltines with peanut butter on them and drink water. They also gave me a nausea patch (thanks to Dr. K.!). Finally, my heart rate went down and they said I could leave. Mom and I left Vanderbilt around 4:15pm Central time.
The ride home went well. My mom called our family friend, Doris, and put her on speaker, so I talked with her a little bit. I don't know what kind of anesthesia they gave me, but after a half-hour or so in the car, I was wide awake, not feeling hung-over or sleepy. I started listing all the things I wanted to eat when I got home. They kept changing. First it was cereal. Then it was ice cream. Then it was eggs and toast. Mom eventually said I could have them all. She said it was a good thing I had an appetite. It meant I wasn't sick. We got home at 8pm EST. And I ate! I did have cereal (Cinnamon Toast Crunch) with almond milk. I had a banana popsicle and peach oatmeal. Again, I don't know what kind of medicine they gave me at the hospital, but I was WIRED when I got home (well, Mom and Dad's home!). Long after Mom and Dad had gone to bed (and Mom didn't go to bed until around midnight), I was still wide-awake. I ended up listening online to the sermon my dad gave a couple of weeks ago that I missed. It was awesome (as usual) and all about fear. After listening to that, I was still wide-awake, but eventually fell asleep sometime after 2am.
Mom counted and I now have 9 incisions. My head looks like a roadmap and I have no hair (they did shave a little more off this last time, but not my whole head, so now I REALLY look ridiculous!). BUT...every scar tells a story and if I have to lose my hair to gain my walking, I'd do it a million times over!
Now, the waiting and the healing begin. I like to think of it as the surgeries were Dr. K.'s "hard" part. The recovery is now my "hard" part. I'm very, very impatient with these things! First, I have to wait until all my incisions heal and the pain goes away. Then I have to wait until March 29 to get the device turned on. Then I have to wait to see at which level of stimulation will work best for me. Dr. T. (the Vandy neurologist) reminded me that, unlike in Parkinson's patients, dystonia patients don't see immediate results. It's a process. I also now have to wait for my hand to heal. I have to laugh, because the faster I want to go, I get hit with scenarios in which God seems to be saying to me, "Slow down, my child, in MY time all things will happen for your good."
Your incisions are beautiful Steph and your Dr. Pepper story made my day!!! Keep your head up (pun intended), take your time and things will work out like they're intended to. We miss you -- G
ReplyDeleteHaha, they aren't beautiful, but thanks for saying so! I miss you all too.
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