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.