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.
