A lot of people have been asking me about my most recent hospitalization. And quite honestly it’s a looooooooong story. So I thought, what better way to tell it then on my blog that I just started so then its there forever! So here we go. Buckle your seat belts ladies & gentlemen, apparently it's gonna be a wild ride no matter if I remember it or not!
This was it. I had waited 3 months for this moment to arrive. September 16. Was I scared? Maybe, but I would never let myself admit it. My parents had woken me up at 5:00. I needed to be at the hospital at 6:00. I stayed in my pj's & half-asleep just got in the car. When I got there, I was told to go to the 4th floor. When I got to the 4th floor, I thought to myself, "This doesn't look like pre-op. It looks like a hotel lobby. Then my parents & I were given a pager, & were told, when it went off someone would "escort" us to pre-op. I thought, "Ok, this is kinda weird, but I'll go with it.” About 15 minutes later, our pager went off & a young man with a red vest on came up to us & said, "OK. Let's go to Pre-op." We got to the 5th floor & checked in with another set of people. But this time I got to go straight into a "holding room”. The nurse came into my room & said, "Let me see where we are at." I said ok & she left. It seemed like forever until she came back & said, "Unfortunately they're delayed." My mom asked how long. She said, "Well they had a trauma in the middle of the night & they're just finishing up the surgery & then they have to clean the room, so I'm guessing an hour & a half maybe?" Greeeat just great. Although I had already been waiting 3 months for this. I guess an hour & a half wouldn't make a difference. My mom said, "Oh if they're cleaning the room, tell them to take as long as they want. We don't want her getting an infection." To that I responded, "I don't want an infection either but speak for yourself! I don't want to be waiting here forever!"
Well to fast forward a little bit, I went back at about 9:30, & according to my mom they didn't start the surgery until about 10:30-10:45. So I don't know if they put me to sleep then went & got breakfast lol or what but my mom said when they were finally called to the recovery room, I said I was in a lot of pain. She asked Dr. Frim when he came out to talk to them, what my new shunt was set at, & he said it was set at 3. So technically it was set at the same place my other one was set at. There were no beds, so I stayed in post op until probably early that evening; it was a loooong time. The next thing I remember, was that night not being able to get up without excruciating pain, which I thought was low pressure pain. And so I believe the resident turned me up to four. In the middle of the night, I was awakened by pain and then noticed I was dry heaving. But my mom was sleeping. I didn't really have time to do anything except look to my right & throw up. Needless to say this woke my mom up. The nurse was called, we had a little freak out session, chalked it up to anesthesia wearing off & tried to get back to sleep.
About 5 days later when the residents rounded & I said, I think my pressure is still low, & so they turned me up to the next setting, which was as high as this shunt could go. By that night I was in terrible shape. My stitches from the incision, which now they're saying wasn't sewn up properly in the first place, had burst. So I was leaking fluid everywhere. My mom had the nurse page the resident & get him up to my room immediately. By this time, I had lost both of the IV's that they had put in during surgery a few days earlier, & they had given up trying, after multiple nurses had been trying for hours. So this made the resident's job a little difficult. How are we going to give her the meds to basically forget this ever happened, we can’t give her a shot in her head to numb the area that would just be subjecting her body to more infection. Well an IM shot of course. I can’t really tell you why, but I had an out of body experience. I could see myself lying on my side, crying with my mom sitting right in front of me & I could see the resident working feverishly to sew up my head as quickly as possible. And I heard him say, "Oh she's not crying because this hurts, she's crying because of the huge dose of Ativan I just gave her. Which my mom confirmed he did say. Maybe it was the huge dose of Ativan, but I will never know. When he was done, I assume I passed out.
Honestly I don't know what happened on the in between days of having this happen & going to ICU. My mom said there was at least one day in between. But I woke up in the ICU. With a drain coming out of my head. I looked around & immediately felt scared out of my mind, because I had no idea where I was, what time it was, or if anyone was with me, but what scared me the most was I could tell time had passed and I couldn't tell you anything about the time. I looked around & saw my mom. I said, “Where am I”? She told me I was in the ICU. When I was in ICU I was on complete bedrest, because I had the drain in. & for a lot of it, I had to lie completely flat; which anyone who knows me knows I cannot lie perfectly flat, for any extended period of time. So that was fun…….. But later that week they confirmed that the surgery they just did was a failure & that I would be going to surgery sometime in the next few days. They took out the drain because you can only keep Huber needles in for so long, & then I started leaking through my incisions again! They got it under control but I was still leaking so they wrapped it super tight with gauze. During my stay in ICU (8 days), I got blood draws three times daily, 2 shots a day in my stomach and two shots a day in my hip bone. So I was SORE. It was absolutely impossible to get up and do anything. But I couldn't get up anyway. But because it's me and Murphy's law runs my life when I can't get up I want to, so I was so restless, which was painful because I would want to move but at the same time be in so much pain from the shots and blood draws I felt like I couldn't.
On surgery day, my nurse Rahel came in the room & said they just called her & said I was next & needed to be in pre-op asap! So she took my bed to pre-op, which was so nice. Honestly in the 10 years I’ve been in the hospital, I don’t think I've ever had MY nurse bring me to preop. I’ve just had the transport people do it. That really made me feel good. She knew I was really upset & she had been my nurse for days before & I had developed a great relationship with her, so it meant a lot to me that she was able to be there especially since my parents weren't there yet. She said, (I will never forget it,) when we got to pre-op, “I probably won’t see you when you get out but I’ll see you tomorrow, ok? I promise.” So I had surgery again. I remember the first thing I thought when I woke up from surgery was, “I’m alive. I’m still here &I’m so happy." Pain is temporary, but lessons last a lifetime. I kept saying this thought to myself during the remainder of my hospitalization, because it's really true. I was just so happy to be alive. I went back to ICU later that evening. A few days later, I started getting terrible neck spasms. So bad, they had me in a ball crying. I remember leaving Neuro ICU & Rahel asking me to smile for her because I was well enough to leave N-ICU how great is that? I couldn't force myself to do it because I was in so much pain. I said, "can I owe you one?" She said, “Sure. I’m sorry honey.” I said what I always say to the nurses, “It’s not your fault.”A few days later, a doctor who I didn't know was outside my room reading my chart. I looked at my mom & asked who that was, she said she didn't know but we would find out in a minute because it looks like he’s coming in. He said his name was Dr. David from INFECTIOUS DISEASE. My mom & I looked at each other & I immediately went under the covers. I knew what he was about to say, &I didn't want to hear it. He said that they cultured my shunt that they took out &it was positive for staph-eppi. My mom said how?! I was on antibiotics for days. He said he wasn't sure, but they wanted to start me on Vancomycin q6 5,000mL for two weeks. I was completely blindsided by this news. I felt so defeated. Nothing during this hospitalization had gone right & now this? The next 17 days were long & painful; having to get blood drawn twice a day to see what my vanco levels were, getting insanely painful shots in my stomach twice a day, which took a while because they were blood thinners and so they make you bruise and nurses would just look at my stomach and sigh because there was no where to give me the shots because my entire stomach was purple & trying to get up & walk around the floor to make the doctors happy, but then absolutely passing out when I got back to my room after only going around the floor once. But I can honestly say now, because I would never say it while this was going on, I am stronger because I went through this. No matter how hard it was for me to go through, or how hard it was for my mom to watch, I am now a stronger version of Kimi-in a small compact package. I can’t say I would do it again, but I know I may have to. This story is only one of the hundreds of stories I've acquired over the past 10 years. These stories need to stop, & they can’t stop without your help. So please help me make Hydro History! Xoxo kimi