The True Meaning of Christmas

Let me just start this out by saying I’m starting to feel very different about the past. Before, I was honestly just trying to get through it, & when it was over, it was over. In the past. Done; etc. But now I know it will never just be a part of my past & that’s ok. I am getting stronger every day, but I do have moments, where I think to myself, “OMG, I made it through what!?” & YES I do feel like I have missed out on plenty. I know people like my mom, try to put me on this glorified pedestal but I’m not really. I’m human just like everyone else, yes, I do feel like I've missed out on a lot, YES I do get sad about it. & I’m starting to realize that’s OK. I don’t like to do it all the time because I feel like everyone has this “amazed” picture of me, where I am strong all the time, & I don’t want to let anyone down, but in reality I’m not. You read in my last post, when my parents left that night, I cried for two hours & for days before that. I just never wanted to admit to what it was all about because I felt like if I did, then I was letting it win. But now I know that humans crumble. It’s part of our nature. So does the Christmas season not make me as cheery as it once did? Yes. Is that OK? YES! OK. Now I’m ready to start my post.

December 13, 2006. When you see this date, you might try & think about what you were doing that day, or maybe you’re thinking, “Oh hey, that’s kind of close to Christmas” but that day has a completely different meaning to me. Nine years ago, I was laying in Evanston hospital wondering what was wrong with me & whether I was going to live or die, because of what Dr.’s were saying, or rather not saying. I had just had a shunt surgery, the month before, had a “fantastic” recovery, was all caught up in school, getting ready for finals in January. & one day, about a month after surgery, I woke up & I couldn't really stand up straight. It was like a rubber band that has been stretched to its ultimate capacity. I told my mom, & she said, that if it didn't get better that day, she would take me to the doctor. I remember that night, telling my mom I wanted to sleep downstairs, I can’t remember why, but I just wanted to. Now that I’m remembering what I went through that night, that decision was one of the worst decisions I’ve ever made. I was up all night. Crying, I couldn't move, but I felt like I had to in order to escape the pain. I eventually fell asleep just from pure exhaustion. The next day I told my mom what happened, & she knew something was wrong. She decided to keep me home from school & we went to the pediatrician later that day.

At Dr. Nelson’s office, she asked me to lay down, & felt my stomach. She immediately became concerned & said I should get to Evanston hospital because she thought it could be appendicitis. We went to Evanston, after my doctor called them to let them know what to expect, & to give them an overview. They immediately wanted to do a CT of my abdomen. I remember going into the CT machine, arms over my head, & just watching the film spin around, that is to this day what I do during CT’s. We went back to my “room” in the ER, & doctors came rushing in almost immediately. They said, “She has a mass in her stomach & we want to drain it out”. Honestly, immediately, I just thought, “WOW & you’re a doctor? Did you hear what you just said? You just basically said, we have no idea what’s wrong with you but we want to do an extremely invasive test to figure it out, knowingly subjecting you to infection.” After they said this, I immediately looked at my mom in terror, because to me “a mass” meant tumor. Now at that time, I still wanted to major in pre-med. So I was very aware of what goes on with the human body, & I thought if it was a tumor they wouldn’t be able to “drain it out”, so that begs the question again what is it? My mom said, “You guys aren’t touching her until I talk to her doctors down at University of Chicago. The doctors just looked at my mom helplessly & then at me, as if they were saying, “OK, but you better hurry, look at her.” I was lying there in a fetal position, holding my breath because it hurt to breathe, until I couldn't hold it anymore then letting my breath out & tears filling my face from the pain I was going through.

Finally my mom convinced the doctors at Evanston after a very chilling “Get her to U of C, the doctors there don’t know how to care for her” from my doctor’s nurse, Kelly, who she had called in a frenzy just wanting to hear from someone at U of C. I was placed on a stretcher & we got in the ambulance. I remember thinking, “I've always wondered what it would be like to ride in an ambulance, but this is not exactly what I had in mind”. I closed my eyes, but I remained awake from the pain, even after the max dose of morphine they had just given me for the ride. I heard the EMT’s talking to each other, I could hear my mom sitting in the front, periodically asking questions about me. It took forever to get to U of C. At least that’s what it felt like. When I got there, it felt like ok we’re here, now I’m going to be ok.  But we were so wrong.  We got there, & they had been thinking that I had a shunt infection, but I didn’t have the two main features of any kind of infection which were an elevated white count &/or a fever.  I will never forget the fellow’s words after hearing about my nonexistent blood counts, “Well we will admit her & just watch her, because if it is an infection, it will very quickly make itself known with no antibiotics; & that’s exactly what happened; four days later, screaming in pain, with a fever of 104 white count off the charts, I was rushed to the OR. My shunt was removed & an external drain was put in. My parents were told to get comfy, I would be spending the next 3-4 weeks in the PICU, but they chose not to tell me that, because it included Christmas & our family trip to Disneyworld.

When I was in the PICU, I was essentially bedridden, because in order to get out of bed I needed to turn the drain off, lower or raise it, unplug Beatrice, my IV pole (I named her, when you’re in PICU doing nothing all day, you get bored) & then get up & bring Beatrice with me, but not walk too quickly because the drain would pull because it was held into my head by stitches. After I had walked enough I would need to go back to my room, plug Beatrice back in, lower the drain & turn it back on, so sometimes I just wanted to stay in bed, because getting up was very labor intensive.  I was on toxic antibiotics that burned through my veins. I remember every time they came in to hang my antibiotics, I would look at my arm, as if I were saying goodbye to that IV because I knew by the time antibiotics were over, my IV would be toast. My mom begged for a PICC line, but they were worried about possible infection with the PICC, & it adding to the deadly, rapidly growing staph infection I already had. So I also had to endure 5-6 IV pokes daily, sometimes 2-3 times daily.

So Christmas came & went in the hospital. My parents brought my American Girl doll Christmas tree, put a Santa hat on Beatrice, tried to make it seem normal, but I knew in the pit of my stomach, nothing about a hospital Christmas was normal. Every night I said prayers before I went to sleep, praying for God to please wake me up from this horrible nightmare, but I also wanted to pray for all the kids who were sicker than I was that shared the PICU floor with me. Most of them, not even conscious. I was so sick, & yet so so healthy compared to the rest of the kids, & so grateful for it.

About a week after New Year’s, my parents were told that my cultures that they had been collecting, were coming back clear & that my counts were going down. I could finally have surgery to have my shunt internalized again. Yay right? Wrong. My parents were told at that surgery two months before, that my ventricles had collapsed on themselves, (SVS) & therefor, they would need to make my ventricles huge before surgery to make sure the shunt was going to fit. What does that mean? It means setting the drain to an impossibly high number so that it won’t drain until the pressure inside my skull reaches that high of a number. My parents also learned that day that I was an add on in the surgery schedule, which means I could be going through this all day but they weren’t given a choice so they had to do it. I spent the next 8 hours in horrendously agonizing pain, throwing up, eyes crossing, feeling so dizzy, crying &  moving just in time to throw up for the hundredth time sometimes in the bucket; sometimes not. Then I was given a drug to calm me down, because my heart rate & respirations were going ballistic, because of how freaked I was. That’s the last thing I remember, before I woke up from surgery later that day.  I was fine, & I recovered in the hospital for the next 2 week, was given a few more antibiotics to make sure everything was OK, then I was allowed home to try & resume my life.

I remember after I came home, that’s when it really became clear to me that tomorrow isn’t promised to a single one of us. I promised myself & God that I would start appreciating life & everything in it. This was when I really started embodying that ever popular quote by the famous Marilyn Monroe “I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you can appreciate them when they're right, you believe less so you can eventually learn to trust no one but yourself, & sometimes good things fall apart so better things can fall together." This is the promise I made to myself, I can’t change the way I was yesterday, because it has already passed, but I can change the way I’m going to act tomorrow. Sometimes things do fall apart so other things can fall into place. This is not a mistake; it’s called fate. The past is going to turn me into a better person. No matter how upset I am about the way things turned out, I will eventually look back on this & say, “Wow, I don’t know where I would be in my life without this, & I can honestly say I’m there now, & my view is absolutely wonderful.

What are you thankful for this year?

It’s during the holidays that we realize and contemplate what we are thankful for. But that made me think of something, shouldn't we always be thankful for something no matter what day it is? We are so blessed to live in a free country and to have food on our tables every night. That’s a given. But what I’m thankful for this year, stems from something else entirely. I’m thankful that I have hydrocephalus but also that I’m still here to reap the benefits that it has shown me do exist. I’m thankful for the journey hydrocephalus has allowed me to walk, for I don’t know where I would be in my life without it. I know I wouldn't be as compassionate or as thankful for everything I have, because I know what it’s like to not have it. I said this in my last post but it’s really true- if I could sum up hydrocephalus in one word it would be thankful. Because however painful the condition is and however many surgeries I will have had by the end of my life, I know that I wouldn't be who I am without them, Hydrocephalus took some of the most crucial years in terms of "finding yourself" away from me and molded me and shaped me into the person I am today. But we cannot ignore the truth; Yes the facts are the facts: I've gone through a lot. Some doctors say I shouldn't be standing here today. But I am, and so I feel that it’s my job to live out the meaning of what it is to be truly thankful because I know what it’s like to not be able to walk, or talk or to spend holidays with loved ones at home. It has all been the most humbling experience I've ever gone through in my entire life. I’m not trying to say, I was a spoiled kid who got whatever she wanted, but I’ll be honest. I never really knew what it was like to “truly struggle” until I got sick. And this allowed me to walk in those shoes. But it’s almost as if I said as I was getting better and returning to normal life, “Yes this is hard, but when I do get through it, I end up a more mature, smarter, version of myself, so maybe I won’t take these shoes off. Although things have not gone the way I wanted, I can’t say I could go back I would change them, if I could.

So this holiday season as we celebrate the true meaning of Thanksgiving and the birth of the blessed Jesus Christ, I challenge you, my readers to notice the things you wouldn't and to be ever so thankful for them. Something as simple as noticing how your arm falls after you’re done scratching an itch, or how you can run to hug your loved ones as they all pile into your house for the holiday meal. I might get down that I have hydrocephalus more than I would like to admit and I know I take this back every time I have to have another surgery, but honestly, I wouldn't change it, the things that it has taught me have given me immeasurable courage and grace. I remember when I was in the hospital this past time, I was so sick, and we couldn't figure out why, and  I actually told my mom that I wanted to die. And then just like that, I had a whisper in my ear, and that whisper said, “It’s not your time Kimi. I will help you through this, I promise you are not alone”. I think it was my guardian angel. And she fulfilled her promise.  She didn't take my pain away because she knew that it was meant for greater things such as teaching me, but she made sure I didn't go through it alone. And I can’t explain the feelings I had after that night. Even though I couldn't see her, I know that my angel was in my room all month. She was there watching me while I had to get my incision sewn up in my room with no medicine, she was in the neurology team that was watching over me in ICU where I was having seizures, and she was there in my surgeons’ hands when I needed the second surgery, and she was there with me on the second to last night I was there, when I crumbled into a pile of tears when my parents left the room. She was there every step of the way, and even though she couldn't stop bad things from happening, she was there to make sure that I was ultimately OK. 

 I think there's a lot to be said about the fact that I never figure these things out until after they happen. I think this is because my soul knows that this is going to make me a better person, and I said a long time ago, I don't care what I need to go through during this lifetime with hydrocephalus just as long as it turns me into a better person; because no one's perfect. There's always room for improvement, and I think this is mine. This is what I am thankful for this Thanksgiving. I’m thankful that I am here and healthy, I’m thankful for every sleepless night I had at U of C that had me up and awake contemplating everything because those nights are what brought me here, and made me not hate hydro, but be thankful for it, and I am thankful for my guardian angel. She’s awesome!

So to sum it up, I’m just thankful……..for everything I have and everything I will have tangible or not. 

CCD and I don't mean the Religion Class Sept16-Oct 17

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

A little about me and why I started this blog

I was once asked, “What is strong?” And I said, maybe being able to lift a thousand pounds. Now if I were asked that same question, my answer would be a little different.   Now, I would say, being able to last an entire day with no pain meds. It’s sitting there with no emotion on your face as your nurse opens the 6^th needle for an IV that she will eventually never get. It's not crying when you hear about your 33'rd surgery and then two days later find out that surgery was a bust. This is my world. Whenever I said this in the past, I always followed it up with, "It wasn't supposed to happen like this, it was supposed to be different," but I try not to say that anymore. Now I know that everything in the past ten years happened for a reason. I know it’s really easy for me to say that now, and every time I get sick, I think about myself saying this and I tell myself I’m crazy, that I would never want to go through this again. But every time I make it out ok. And I think there’s a lot to be said about that. Yes you could say it’s because I am strong, but it’s also because I have a great group of people cheering me on; Telling me I can do it when I’m having those moments of doubt. When I say I can’t do this anymore, I have a mom whose there to say, I can’t do it for you, but I will be right here with you while you take every step of this journey. To be honest with you, I always felt weird when people said I was “So strong”; how did they know? When I’m in the hospital, yes, I may get through it, but what other choice did I have? If I had said, I can’t do this and won’t, I can pretty much guarantee that I still would have gotten better, it just might have taken longer. My point being, we don’t choose when we die and when we have to keep going.

My health was wonderful for 13 years. I almost never even got those colds that in the 3^rd grade, if one kid got everyone got. For my 13^th birthday, I had gotten my ears pierced. And yes, I had earring infections as I was figuring out what earrings I could wear and what earrings I couldn't. But they always got better. But this one wasn't. I was 14 and I had gotten the ear infection. So I just treated it the way I had always treated them. The ear eventually got better. But while it was healing, the pain moved from my ear lobe to the bone behind my ear. And then to my head. My mom wasn't super worried at first because the shunt I had on that side wasn't working. So it wasn't going to infect the spinal fluid it would just keep the infection contained if there was one. To fast forward a little bit, after a lot of different tests at University of Chicago, it was confirmed that I did have an infection in that shunt. So I needed surgery. In my head I was having a nervous breakdown, but if you saw my face you would say deadpan. I just had a look of absolutely no emotion, which now when I think about it screams I’m scared. But anyway, I had surgery, spent 4 days in the hospital, and got to go home on Thursday. This was the last of normal hospitalizations I would ever have.

During the next 8 years, I would have bacterial meningitis twice, chemical meningitis twice and upwards of 22 surgeries as well as a 3^rd ventriculostomy and a devastating stroke when I was 17. Now, I live in chronic pain. But I think now, I am a better person because I have gone through everything I have. Although, I may at times wish I learned it another way, I will always be thankful for the lessons I've learned. I can now be happy when my hand is in a normal position in the morning or when I don’t trip over my foot, the things no one ever thinks about. I challenge you after reading this blog to notice the things you normally wouldn't. I guarantee you it will amaze you… All the things your body just “does”. I used to do these things without noticing them too. But since I can’t do them now, or can’t do them now without noticing how weirdly I do them, it makes me even more thankful. If I can say one word that having hydrocephalus has taught me, it would be- thankful. I’m thankful for everything. This is why you will never hear me complain. Yes you may see a status or two on facebook, but very rarely will you hear the words come out of my mouth. Honestly, I do the facebook thing just to remind myself of how many people do care about me. Because I know when I write those, I will get likes from my closest friends, and comments encouraging me to keep fighting! So come along for the ride. I can’t guarantee it will be pain or bump free, but I guarantee it will amaze you!