Surgery and the days after

We woke up in the hotel that morning totally on time and excited already running late and anxious. I jumped in the shower to do my second Hibi-cleanse delousing. By the time I was done, I was so sterile in oh so many places, I probably could have done my surgery myself. Nate grabbed a cup of coffee and something to eat while I pouted in the elevator, wanting to snatch the coffee away from him, guzzle it, and drive home instead of to the hospital. But I sucked it up, and dragged my thirsty, hungry, decaffeinated and sterile ass into the car. We hauled it to the hospital, watching the clock tick by as we fought about which streets to take, as if we actually know anything about Columbus morning traffic.

If anyone would be late for their own BRAIN SURGERY, it would be me.

Luckily, everyone at OSU Medical Center is so damn chipper, they didn't seem to mind a bit that I was tardy. They were welcoming and seemed so happy to see me! Good morning, Katie! Let's cut that head open!

They got me checked in and up into a room. I changed into a beautiful grey and white gown and slipper socks that curiously had grippies on both the tops and the bottoms. Nate laid down next to me, and we decided we needed some music to set the mood. I put on the "Bubblegum Oldies" channel and we just snuggled next to each other, listening to the likes of "My Girl", "Great Balls of Fire" and "Runaround Sue." We were happy and lovey and we wiggled and danced on the gurney a little. I felt a bit like we were going to a party.

 Reality pulled the plug on our happy snuggle party pretty damn fast though. They took me down to meet with anesthesia, and talk with my surgeon, and Nate had to go to a waiting room. An IV was started, a million questions were asked. I tried to be very funny and witty because I really wanted them to like me, so they'd save my life. (That's obviously something to be discussed at my next therapy session.) I think it worked though, cause they all laughed a lot. And I'm still alive!

Dr. Prevedello, my surgeon, marked the spot where the incision was going to start, and initialed my neck. That made me laugh, that his initials were there, right under my old incision.

Soon, I was given a goofy surgical hat and Nate was allowed to come back to say goodbye. We hugged and laughed and joked a lot. I took a bunch of pictures until they told me to put the damn iPhone away. I kissed Nate and as they wheeled me away, I reminded him not to get remarried too soon if I die (because that's tacky).

When I got to the O.R, I suddenly remembered how crushingly lonely it is going for major surgery. You're surrounded with people, but you could never feel more alone. Nobody can do it for you, nobody can trade places with you. Nobody is going to die for you if things go wrong, and nobody you love will be holding your hand if you do die during surgery. Those are overwhelming thoughts, and it's easy to get lost in the isolation and fear in that moment. A very sweet neurologist came over to me and started rubbing my hand. She explained that she'd be monitoring all of my peripheral nerves with what looked like a chain-link of wires. She told me Dr. Prevedello is the very best, and the only person she'd ever let operate on her, or her children. She asked me if I had any questions. "I'm scared," I whispered to her. "I know," she whispered back, "but I'm going to hold your hand until you're asleep." I tried to say something else, but I remember it came out slurred and garbled, and then I was out.

When I woke up in recovery, I was crying hysterically. I felt like I'd been beat in the back of the head and neck with a sledgehammer. They asked me to open my eyes, but I wouldn't, I was too scared. I threw up several times. They doubled up my anti-nausea med (Zofran) but I vomited many more times anyway. I always throw up after surgery, always. They told me they were going to take me for a CT scan to check for a CSF leak. "NO!!!!" I yelled, but they put me on a board and took me down anyway. It was agony, the rolling of my body left and right, wedging a board under my neck and back, positioning me, tucking me back into my stretcher bed, all the while with me heaving and crying. I wondered where Nate was, I wanted a morphine pump, I wondered what the room looked like, but still refused to open my eyes and see what was going on. I tried to tell them that Dilaudid makes me puke, but I don't think I was expressing it right, because whenever I mumbled about Dilaudid, they'd give me more, and I'd throw up again.

I was reunited with Nate a few hours later, once I got to my hospital room, but I don't really remember it. He was just suddenly there one minute.  I sensed I was in a different room, though I was still refusing to open my eyes. The pain was so blinding in my head, I just couldn't stand the thought of opening them and seeing light and people and bustling. I stayed laying flat on my incision, trying to say things, but not managing much more than a word or two. When I had to throw up, I'd yell, "PUKE!" and Nate would come running with a bin and try to get the bed upright in time for me to make it into the bin. Usually about half went into the bin, and half down my gown. The pain in my head when I'd throw up was like nothing I'd ever felt before....it was searing and ripping. I felt like I was tearing open my internal dura patch. I wondered if I was raising my intercranial pressure too high from vomiting. I became convinced that it was dangerous for me to keep vomiting, so I started refusing my pain meds. This was an enormous mistake. A few hours later, I was screaming for the nurse to kill me. She was so sweet to me, she said, "No, honey...I'm not gonna kill you...tell me about your babies. How old are your kids?" and I yelled, "Fuck you, I don't want to talk about that! Kill me!" On a pain scale of 1-10, I told her my pain was a 20. And it really was. I'm not being melodramatic at all. It was godawful. To validate that feeling, I offer you this: several of the nurses on this floor (which was the ICU step-down unit, for critical post-op and trauma patients) told me that their Chiari decompression patients are in the most pain of anyone else they see. They said it's just an excruciating surgery to recover from, particularly in the first few days.

Finally, after all the barfing and all the agony, they figured out that the Zofran just didn't work for me, and they started giving me Phenergan instead, along with a dose of Dilaudid, Valium, and Toradol. I got relief for the first time, about 24 hours after surgery. And as long as we stayed diligently on top of the meds, I was ok. In horrid pain, yes. But no longer hysterical and begging someone to kill me. I stopped throwing up so much and started feeling like I was recovering a little.

I got out of the bed and stood up, which felt like an enormous accomplishment. My kids came to visit me, and even though I slept through most of their visit, seeing their little blonde heads bob around the room lifted my spirits immensely. The next day, at 48 hours after surgery, I walked around the wing a few times. While I was walking, I saw the nurse that I had begged to kill me, and she was so so so happy to see me up, she ran over and hugged me. Hugged my disgusting greasy puke-splattered self. At 72 hours post-op, I took a shower. My amazing husband got in with me and washed my hair and body. THAT is true love, my friends. And a few hours later, they drugged me up with a huge dose of opiates, poured me in the car for the two hour ride home, and sent me back to recover in my own bed. God I am glad to be here. And by "here" I mean both in my own bed, and not dead. :D

And the view from my room is much nicer, too.

I am still in a lot of pain, but I think doing this operation now was definitely the right choice. My doctor talked to me after the surgery, and told me it was a darn good thing we operated when we did. He said when they opened the dura (that's the membrane covering the brain), they could see that my cerebellar tonsils and brain stem were so compressed that they were turning white. They were ischemic and were not getting blood flow and oxygen, and parts of the tissue were necrotic. He said there was evidence of stroke activity. Basically, it was a very serious Chiari causing a lot of problems in my brain. I'm glad I went ahead with this surgery. I asked what would have happened if we hadn't operated. He shook his head and said, "Would not have been a good outcome."

He did a beautiful job closing my incision. I asked him not to use dissolvable sutures...since that is what my previous surgeon did, and I struggled with infections and suture rejection for 6 months. He chose to use traditional sutures, that will be removed. Here is a picture:

I think it's looking pretty good so far.