It doesn't take very much to bring me back to April 2006. It could be a smell of a nice hot biscuit absolutely drowning in butter and honey, the get well cards from complete strangers that I keep in my ripped, taped over first hospital “treat” bag ever, a beep from my watch, or even Purell hand sanitizer (the regular kind, not the foamy kind). And suddenly with the snap of your fingers, I'm back.
I am at home, just lying on the couch. It's what I've been doing on and off for months. My mom knows something has to be done but I think she has an inkling that my doctor has no idea what to do. I beg her to go "in." Just for some pain relief. That's all I want is pain medicine. At that very moment I didn't care about a cure, I didn't care about the possibility of endless surgeries. All I want is to be in my "safe place" with the security of knowing I’m getting help. Which to me and a lot of chronic kids is Comer. It is the place we feel safest. It's the place where everyone knows you by first name everywhere, and your breakfast takes forever to get to you but you forgive them because their biscuits are amazing!!
I get up off the couch. Just doing this takes every tiny bit of strength I possess, just to keep myself from crying. I walk to the kitchen like an old lady. Bent over and bones creaking. My mom is on the phone with my doctor’s nurse. I wait until she gets off, and then I just stare into her eyes. We do this for about a minute or so. She tells me that I look exhausted. I tell her I feel exhausted. Chronic Pain isn't for wusses. She tells me that she just talked to Amy (name changed in case she goes nuts and wants revenge) and she said we should come in through the Comer ER that she would tell the residents to be expecting us later that afternoon. I go upstairs and pack the "hospital essentials". Cute Jammie's are a MUST. Teddy bear slippers, slipper socks. Blanket that the PICU gave me for Christmas. It seems like I have everything.
When I get to the ER, so many people are coming in and out of my sad excuse for a "room", which wasn’t really a room at all. It was just a bed, a chair for someone else, and lots of monitors, and needles and alcohol swabs. I could hear noises all around me. Babies crying, people yelling, but there was that familiar hospital aura that made me feel safe. That "hospital smell" no longer existent, the beeps of the machines? They would lull me to sleep at night. We finally see Dr. Collins(again name changed) and he says I'm on the OR schedule for the next morning to get a lumbar drain put in. Honestly, I don’t even care about what he’s doing or quite frankly why he’s doing it. I just figure he’s a doctor there has to be some thought processes about what he’s doing and why he’s doing it, and so I’ll be happy that he’s at least doing SOMETHING.
I stay in the ER until later that afternoon. Then I’m up on the ever familiar Comer five. I’m still in a ton of pain, but just the thought of them doing something about it the next day, makes me feel at least a little bit better. For the next 24 hours, I had different pain medicines pumped into my tiny veins. Each time I would get them, they would make my entire arm turn bright red, and burn, slowly destroying the VERY few good veins I had left. Before I knew it, my hands were swollen, and felt like they had acid going through them, but it made me feel better just knowing we were in Dr. Collin’s care. I admit I saw him as a man who could do no wrong, somebody perfect. I worshipped him and he knew it. Even though I never said much to him he knew I adored him.
After two years of almost nonstop hospital visits, you sort of get a shield on your soul, that doesn’t allow you to feel the ups and downs of emotions of when you’re “in.” You’re not “excited” in the exact sense of the word when they say they’re going to do surgery, but you’re happy you will hopefully be feeling better when it’s all done. You guard your heart like it’s precious, you guard the hearts of those around you even closer.
That night, I get basically no sleep. I know I should feel something about tomorrow, but I don’t know what to feel. The past 6 months has disallowed me to feel hopeful about anything, but it makes me feel better that they’re putting the lumbar drain in. Even if it is just to buy them time while they think of something. The next day, I am woken up early, by the fellows and residents. After they ask me their typical 20 questions, I just close my eyes again, trying to forget where I am, and forget what I’m about to go do, it. I said before I was excited, but to a point, you’re never excited about surgery, even if it is just to put a drain in. I hear the main fellow, an Indian woman named Dr. Patel (Name changed, because I know if she ever read this she would want revenge and would track me down) pulls my mom aside and starts whispering to her, I hear bits and pieces, but mainly I heard that I should be heading down to Preop at about 7:30, that they bumped the first surgery on schedule and put me in there.
Before I know it, my nurse comes in and tells me that transport is here to bring me down to the OR, and that she will see me after. They bring a wheelchair into my room but they tell me I can either get in the wheelchair, or just stay in my bed. I decide to just go in my bed. After the transport person ditches the chair, they bring me down to preop. I’ve been on this familiar route so many times, that I think I can do it with my eyes closed. Down the hall to where the hall splits into wings, right by the nurses’ desk, take a left get in the elevators, down to floor number 3. I mouth what the voice in the elevator says, even before she says it. My eyes are closed, because it’s so unbelievably bright. I slide down underneath my covers even further, because of the rush of cold air that hits me as the elevator door opens on the third floor. I am wheeled to preop where surprise surprise we get to wait more. I still have yet to realize why they make you get there so early just to wait.
The usual suspects stroll in, and explain what they’re going to do. The anesthesiologist, the anesthesiology resident, the neurosurgery resident, the preop nurse, maybe if you’re lucky and look young enough, a child life specialist. When I see all the doctors come in at once, minus the neurosurgeon and the anesthesiologist, I know everything’s ready. This is the cue for kisses, and the anesthesiologist’s words that I’m told make most parents cry, “Ok mom and dad, we will take good care of her, time to go.” Surgery is an equal opportunity offender. No amount of money, or privilege can free you from the grip of illness. But no one should be forced to go through as many surgeries as I’ve been through, or my friends have been through. We get well just in time to hear we are having another. When the chronic life chooses you, you’re thrust into a club that you didn’t ask to join and you CAN’T leave. You’re thrown into battle with no training.
I wrap up in my blankets like a burrito, tell my parents everything is going to be ok (not really knowing myself), and give them a kiss. The look on their faces I’ve seen it so many times before, it’s that look of desperation, a look that through the years I’ve seen hundreds of times, whether it be my parents’ faces, or other parents’ faces. I can’t ever imagine what it’s like to hand your child over to doctors and say, “fix her, I trust you and then sign your child away, with one signature on a consent form.” I’ve seen this look in their eyes countless times over the past two years, and I can’t tell you how much I admire them for it. I head down the ever familiar hallway, to the OR, the white, bright, clean OR. They pull my bed parallel to the OR bed, and I slide over. I try to bring my blankets with me because I’m just so cold, but then I hear, “Oh no sweetie, we will give you nice warm ones I promise.” I leave them behind, and try to get comfortable for the next couple minutes that I will remember. I see the mask coming close to my face. The mask comes closer to my face and comes to rest on my mouth. I think I don’t want to breathe it in, but then I think if I just breathe the sooner this will be all over. So I start taking deep breaths. With every breath I take, I can feel my body slowly not be able to move. I can hear the anesthesiologist. She is saying, “Good girl, just keep taking deep breaths, and this will all be over soon. The world around me starts getting further away. Right before I fall asleep, a tear goes down my face, and the last thing I hear is the anesthesiologist saying, “No sweetheart don’t cry, everything will be ok… shhh……. Slowly I slip away into another universe of nothing but black sky; no stars, no planets, just never-ending jet black sky.
Before I know it I’m awake. Surgery is over and I’m on my way to recovery. I realize I don’t have a headache, my back is a little sore, but that’s a small price to pay. I think to myself, “Oh My gosh! But how long is this going to last? I had been conditioned in the past two and a half years to expect the unexpected around each and every corner.
The rest of the day, and the five that follow are spent sleeping off anesthesia, and just enjoying the freedom that I had long forgotten about and had since become so incredibly foreign. No PAIN! After about the fifth day, they decide that for infection reasons they’re going to pull the Huber Needle and putting in an LP shunt in addition to my VP.
My mom tells me that about three days after my insertion of an LP shunt, in addition to my VP Shunt that was already in my head, I am out of my mind with pain. They are pumping my veins with every pain medicine they have as often as they can, my veins are as red as a junkie’s and burn like fire. My dad and brother are on their way to take me home, they are bringing dinner we are going to eat and then we are going to head home. They walk into something no one ever expects to see. Both of my shunts have malfunctioned at once, and I am lying there in a ball, screaming in between bouts of throwing up (which is relatively uncommon, for both to fail at once, especially at the exact same time.) My doctor is called, and rushes to my room, all he says is, “This is it, her vents are huge, I think the Endoscopic Third Ventriculostomy is her best chance.” He even plays with the controllers on my bed, to make the head of my bed go back even further, so my vents would get even bigger faster. He tells my parents we have to go now. What were my parents going to say? He had given them an ultimatum they couldn’t refuse, that is without surrendering my life or so they were told.
It is really late at night when they start the surgery, my mom stares at the doors that she saw me go through just hours earlier. A few hours later, she sees the door open and she sees the man she’s been hoping to see for hours. He spots my parents. He goes over to them, sits down in his scrubs and cowboy boots, and said, “We’re done, um… we were able to make the bypass but we weren’t able to make it big enough…it was close to her brainstem… but uh she hemorrhaged…. She’s ok, but she had a stroke. Um, this specific part of the brain, mainly provides motor skills, and controls a little bit of speech, as well as parts of memory. I tried talking with her, and she can talk, but there is a significant delay, we replaced her LP shunt.”
For the next few days, the only thing I can think about doing is sleeping. Therapists come in, but they don’t stay long because none of them can keep me awake long enough to do anything. I am just so tired. All these therapists keep coming into my room. They keep waking me up taking me to radiology, to drink some weird thick drink that they say tastes like a milkshake but trust me DOES NOT, in order to do swallow studies, doing PT, and I just want to be left alone. When physical therapists come into my room, they’re so happy, and I wonder, “Why are you in such a great mood? Needless to say I am NOT in a good mood. The physical therapist walks into my room carrying a huge belt and a walker. I can only imagine what she’s going to do with them. And then she says the five words I was least looking forward to, “Why don’t we try walking?” I just stare at her, looking at her like, “Um are you kidding?” Then she says, “I promise it will be fun.” “Um I doubt it”, I think, but just appease her. I sit up in bed. She comes over and puts the belt around my waist. I tap her shoulder, and then point to the belt, and shrug, and she tells me that it’s for her to hang onto in case I am unsteady. I nod my head and then shrug, she says, “Honey you don’t remember? You had a stroke.”
My heart stops. My eyes fill with water. My world stops. How can I go on I think? How can I rebuild my life? Well one step at a time that’s how.
A few days later, I am lying in my bed in the pediatric cardiac intensive care unit. (PCICU)Just staring, wondering how my life could have changed so fast. Hearing the beeps around me, but almost not caring. They are part of the PCICU, even more than the normal neuro floor. All of a sudden, words start coming out of my mouth, but they’re not words, they’re more like a lot of different sounds. My mom is startled and so she rushes over to my bed. She starts screaming my name, but it’s almost like I’m in an alternate reality, I can hear her, but she can’t hear the words I’m trying to say to her. Suddenly, the doctor comes into my room. I see her face turn white, I hear her screaming to the nurse, and suddenly, I’m at radiology. Why am I here I think? The CT scan seems to be taking so much longer this time, probably because of the pain I’m now in. Suddenly, I throw up, but I’m lying down and don’t have the strength to get myself up. Before I know it there are people all around me. They lift my head. It seems like seconds pass before I’m back up on Floor 4, PCICU. I hear a nurse scream “She’s critical, the doctor is doing a crash lumbar puncture.” Honestly I don’t even have time to be afraid that this is my first time being awake for an LP, it’s going so fast. And I’m in so much OTHER pain that the needle in my back is the least of my worries. The next thing I hear is, “it’s all pink it’s all pink, the hemorrhage has clogged the LPS, she’s got chemical meningitis; she needs steroids and we’ve got to get her to the OR for immediate replacement, call neurosurg!”
That’s the last thing I remember until about two days later. My child life specialist Christine has come back with an armload of stuff. I just stare at her as she stands in the doorway. She says, “Hi Kimi, glad to see you’re up, can I come in and do some stuff with you? I nod. As she comes closer, I see that she has a desktop calendar, as well as a communication board with a bunch of stickers on it. She sets them on my bed, and says, ok I’m going to put two different colored balls on your bed, and we’re going to work with those first.” She says, “Can you point to the one on the RIGHT for me with your RIGHT hand?” I point to the one on the left, with my left hand. Then she says, “Kimi which hand is your RIGHT hand? I look at my hands, then I pick up my left hand. She shakes her head. She asks me, “Can you talk to me?” I just stare into her eyes. I’m trying to tell her that I don’t understand why I can’t do all these things that I could do effortlessly, just last week? I had no idea what a stroke was, or what it could do to your body. I’m scared, I’m confused, I want to know if it’s going to be like this forever…
She leaves and I cry myself to sleep. Confused, sad, and angry can’t even begin to describe the intense emotions I feel. I just cry until I fall asleep. I wake up a couple hours later, but I hardly feel refreshed. I just feel empty. Like there’s nothing left. Emotionless, in pain, and hollow, those are the only words I can think of to describe myself. I am at my lowest point, I don’t think I can go any lower. These events are the sequence of how the next few days go.
I go home thinking this disaster is over. But it’s unfortunately just beginning… During the next 11 years, I will have about 15 more surgeries, as well as 4 more life threatening infections,
Fast-forward 11 years. Life has tried to show me for the past 14 years, that it has complete control, but I have a feeling I’m winning. The way I’ve tried to rebuild my life after this life changing experience, (honestly originally I had written horrible, but then I was thinking about it, was it horrible at the time? OF COURSE, was it horrible the past 11 years? There were times, but I wouldn’t trade one second of what happened to me over the past 14 years because of the adult I’ve turned into. I think it’s all worth it. It’s not fun, but rarely are worth it things easy to attain.