I was 20 at the time of my accident.
I've moved around a bit in my lifetime. My dad worked in the army and
then the Public Health Service. We moved everywhere from West
Virginia, Germany, Wisconsin, to Seattle. Not strongly connected to
one place very closely, I was going to college at Colorado State
while my parents lived in North Carolina. Minus a few crazy events
here and there I had a pretty boring childhood and early adulthood. I
had never even had a broken bone.
Me pretending I know what I'm doing on a longboard.
After spending Christmas with friends,
I flew out to spend New Years with my family. We were up in Maryland
where much of my extended family lives.
THE ACCIDENT - December 29th,
2009.
The plan was to spend a few days in the
Baltimore area then drive home to North Carolina the day of the
29th. I've always hated long car rides, so I always tried
to sleep through them. I figured I'd be sleeping the entire ride to
North Carolina, so I spent the entire night before my accident
playing video games on my little cousin's XBOX (Lego Indiana Jones).
I was asleep practically before we left my Aunt and Uncle's driveway.
I did wake-up momentarily to hug my older sister as we dropped her
off at the airport but otherwise I was down for the count.
How I spent the last night before the accident. I finished the entire game about 30 minutes before everyone woke up.
I slept in the back seat up against the
door with my seat-belt on. From what I'm told, my Dad was driving on
the freeway when he saw the car ahead of him stop suddenly. My dad
slammed on the breaks and our car started spinning wildly out of
control. Our car slammed into the bumper of a neighboring truck.
My Mom was in the front seat and had
been knocked unconscious. My dad, awake and unharmed, told me later
that I was screaming my head off; I have no memory of this. They
shipped my off to Shock Trauma Center at the University of Maryland.
I had two of my vertebrae (L1 and L2) completely shattered, broke
both arms, and had lots of other internal damage. They put two
stabilizing rods on either side of my spine but the surgeons felt it
was better not do any surgery that could damage potentially intact
nerves. The bones in my arms were set and a metal rod was placed in
each.
I
broke L1 and L2(top of Lumbar curve) but my injury level is considered
T10(bottom of Thoracic curve) since that was the initial line of what I
could move.
I woke up not able to move anything
below the level of my belly button. The next few days were a morphine
haze interrupted by a swirl of visiting family. I was sort of
emotionally numb, staying upbeat the entire time. I just kept
repeating that I wasn't going to be stuck using a wheelchair. They
moved me out of there and into a rehab hospital. I starting to
learn about the realities of my new life and what it would be like to
move and live in a wheelchair.
I eventually went through all 5 stages of grief and loss over my legs. I felt that the part of my life where I walked had died.
It was about 6 days after the accident
when I finally broke down. I wasn't able to wheel myself around with
both arms in slings, I couldn't move very well, couldn't even control
when I shit, and didn't know what I would do. It all hit like a ton
of bricks.
NURSING HOME (rebreaking my right arm)
About
a week into my new rehab I rolled
on my right arm in therapy and rebroke it. My surgeons, extremely
irritated with me, said that I wasn't allowed to continue therapy there
for at least a month and advised me to go to a nursing home.
In the nursing home after I rebroke my arm.
Though some of my darkest moments were
in that nursing home, this was the place that I regained movement in
my legs. After a month not moving anything I wiggled my right big
toe. The next day I wiggled my left big toe. Progress slowed for
awhile but over the next few weeks I regained good chunks of my right
leg back.
KENNEDY KRIEGER
During my stay at the nursing home we
heard about the spine program at Kennedy Krieger Institute. An
offshoot of Johns Hopkins, the hospital had a reputation for
significantly improving function after spinal cord injuries. A few
people warned me, including my physical therapist at the nursing
home, that they felt Kennedy Krieger made too many promises. I was
hesitant but after the dismal conditions at the rehab hospital and the nursing
home I felt that anything was worth a shot.
The staff of KKI helped put my mind at ease and helped push me forward. Shown here trying out e-stim on my leg.
It turned out to be better than I could
have ever hoped. Primarily a kids hospital, the spine program's
inpatient wing will take you if you are under 21. Full of energy and
excitement, the feelings were infectious. They advocate activity
based rehab. This is the idea that muscles needs to be used and
exercised, in the hope to promote new nerve growth. They make no
promises but the research shows that if the spinal cord isn't cut
completely the working of muscles will help to promote the growth of
nerves. This is accomplished through electrical stimulus, in the form
of portable electrical stim-units and electrical stim-bikes. They use
these alongside more traditional mobility, balance, and care
training.
Showing off my wheelchair biceps and my scars.
MORE BACK SURGERIES
Repeat imaging near the end of my
inpatient stay showed that the broken pieces of spinal column were
pressing on the cord. I had gotten significant function back in my
right leg by this time but the left leg was still mostly inert. Even
electrical stimulus couldn't get the muscles in the left leg to move;
the hope is that another round of surgeries could improve my overall
function.
They cut into my back and removed the
broken pieces of spinal column. They then put in a metal cage and put
the pieces of bone back in. The alive bone cells would regrow into
the shape of vertebrae, this time without pinching my spinal cord.
It is safe to say I've seen more hospital beds than I care to mention. Here I am reading a stack of get-well cards
I stayed in Baltimore with my Aunt and
Uncle until the end of the summer, doing outpatient rehab at Kennedy
Krieger. While the effect wasn't immediate, over the next few weeks I
began to get significant function back. I had my right leg completely
back by the end of the summer and few more trace muscles in the left
leg. I now had enough function back to walk around with a leg brace
for short distances, with the help of a walker or crutches.
Out stretching my legs.
COLORADO
It was my goal to return back to
Colorado State again. I was still using the wheelchair but I felt
confident enough to move out there on my own. I happened to have an
older brother who was taking graduate classes at CSU at the time who
was willing to share an apartment. I was excited and pumped to start
things off again.
Though things started off strong, I
eventually started having various health problems. I'm not naturally
self motivating so when I felt down I would just lay in bed which
only made things worse. Eventually I was in so much pain I stopped
going to class altogether. By halfway through the semester I hit my
lowest point ever. My mother came for a visit and saw the condition I
was in. She asked if I wanted to move back home with them and I said
yes.
NORTH CAROLINA
Having someone to kick me out of bed
was exactly what I needed and my parents obliged. They started by
getting me to wheel around and to do more and more walking. Though
this was still difficult I got better. I slowly began to work up
stamina and endurance. I had a 3 times a week PT program and worked
out/swam at the YMCA. I transferred to Elizabeth City State
University, our city's university. Though no Colorado State
University they were close and offered a biology degree program. I'm
still in North Carolina today, working on finishing up my degree. I'm
set to graduate spring 2013.
My physical function continues to
improve. I go periodically to Kennedy Krieger for additional rehab.
These 2 week bouts, nicknamed “Boot Camp”, yield the most
exciting results. In January 2011 I trialed using two canes instead
of walking with crutches. In June 2011 I trialed using an AFO (Ankle
Foot Orthosis, up to just below the knee) instead of the KAFO (Knee
Ankle Foot Orthosis, up to the hip) I had used up to that point. I
started out the fall semester of school vowing that I would not bring
the wheelchair from the house; every time I left the house I would
have to take my leg brace. I was still using my KAFO when I walked
anywhere and used the AFO only in therapy. The KAFO was a heavy mess
of wires and levers. October 2011, one of the wires on my KAFO
snapped during a long holiday weekend. Since I had sworn to not take
the wheelchair from the house I used my AFO the rest of the weekend;
I never went back.
Trialing out two canes instead of crutches.
I finally ditched the wheelchair
completely this past January, two years after my accident. I was
using the AFO and canes well enough that I felt it was time. It was
hard to get used to at first but I managed eventually. My wheelchair
now serves only as a bed for my cats.
My most recent accomplishment is to
have regained enough strength and balance to switch to walking using
only one cane. Not quite as dramatic a shift as some of my others, it
still wasn't easy to adjust to losing a walking aid. I continue to
work toward my eventual goal of walking without any leg braces or
canes. I'm not there yet but these past two and a half years have
shown me it's more than possible.
I'm not the boy I was. Who can say what I'll do with my life now since I almost
lost mine. The focus of my journey has changed quite a bit, from
learning how to use my wheelchair to walking again. I'm walking full
time now but it wasn't quick or easy.
I fully acknowledge I was lucky my
injury wasn't as severe as it could have been and that I had a lot of
help along the way. I can't speak for everyone with a spinal cord
injury, since each experience is different. I do know that the most
important thing is to be up and aiming toward something. Whether this
is finishing the next level of school, getting back function, or
simply being fit enough to try something new. At one point I would
have stayed in bed and given up. And if I had stayed there I would
never have gotten out of my chair. So who knows where you might end
up.
One suggestion was to get shoes with more ankle support. I'm
pretty sure they were talking about hiking boots but since I have a
sense of style I got a pair of Chuck Taylors, the old school high top
Converse. Though I wasn't expecting these to make any difference, I
found myself walking better and better.
I began walking so well that I decided to leave the cane at home. That
first day was kinda rough but after that I just kept going. It's now been 2 weeks since I used my cane at all!
No I didn't break my canes. They're in the corner collecting dust!
I haven't written anything on this blog in a while but the anniversary of my car accident is a date I couldn't ignore.
If you happen to be reading this blog for the first time, read this post first, explaining my story. (If anyone wants to see how things have changed you can check out my First Post After The Accident, Year 1, and Year 2)
This year has been one of continuing progress. I've had 2 different leg braces, ending the year using the Allard Toe-OFF AFO, an ankle brace that makes use of carbon fiber to make it durable and light. This is my smallest and lightest brace yet, compensating for the lack of ankle movement in my left leg.
Some of my old braces took about 5 minutes or more to get on. This takes about a minute.
I've still had my share of medical issues. I've had multiple surgeries for an ongoing infection that's gotten all the way down to the metal in my back. Once metal hardware is infected (especially necessary hardware that you can't remove) it's very hard to get rid of. Precautions have been taken and every measure is being taken to try and eradicate the bug in my back.
I finished another semester, leaving me only one more until I graduate with my bachelor's degree in biology. I'm already applying to graduate schools for next fall, where I'll study bioinformatics (a combination biology and computer programming).
I've been continuing to explore my new found passion for painting. This year I painted my Christmas gifts for people, coming up with a few really great ones. Some are better than others but I had fun painting each and every one of them.
The tabernacle of a church, painted for my mother.
The Four Seasons, for Q. Try looking at it upside-down.
The final painting turned out really well, though this picture didn't do it justice.
The original.
The Nightmare Before Christmas, for Kayla.
Batman Celtic Knot, for Philip.
The Sun Over Lake Michigan, for my aunt.
Minas Tirith from Lord of the Rings, for my dad.
My friend Cat asked for a picture of me and I painted her this.
There are still a couple of others in the mail that I won't post. Needless to say I've been spending countless hours working on these. The best part is that from all my brainstorming sessions of what to paint for people, I have a giant stack of painting ideas and sketches that I can still use.
Lastly I want to thank everyone who's helped me along this past year. I've worked hard but no one gets anywhere without some from help of those around them (family or friends). I first want to thank my Mom and Dad, who've been there to kick my butt over the years when I'd already given up. Dad, thank you for being there for advice, counsel, and a fresh pair of eyes. Mom, you've been there since since the beginning and have carried me kicking and screaming down the road to recovery; I love you both more than words can convey. To my siblings, thanks for being there to dish out the family gossip, to commiserate, to give me a patient ear when I've needed it, and helping to keep my life in perspective. Thanks Philip, a true friend through anything. Thanks Kelley, my amazing faghag, who helped keep me sane no matter what was going on in my life. Thanks Tony, for reminding me to relax and enjoy life and not to take things so seriously. Thanks Kayla and Eli, the cutest family I know, for reminding me what's important in life. Thanks all the staff of Coastal Rehab (though especially Mindy and Lynn) for tireless working to keep me improving. Thanks to all the staff up at the Kennedy Kreiger Institute and The International Center for Spinal Cord Injury (Kristin, Meredith, Brooke, Stephanie, Marjorie, and so many more) who've been the driving force in my rehab since I was first injured. Thanks to all the doctors (there's dozens), nurses (hundreds), and other staff who've helped me with my ever climbing number of medical visits. Thank you to the orthotists who've worked tirelessly to make sure I have a working leg brace, without which I wouldn't be walking at all. Thank you to all the people who've read my blog, followed me on facebook, tumblr, etc; though this may be just a way to pass time for you, the support I've received from all of you has kept me going for all these years.
I'm currently up in Baltimore for Boot Camp again, so expect updates to follow in the next few days.
So this past week was eventful. Last weekend another wonderful bubble from the infection in my back popped up. I got sent to the ER, in Baltimore... again.
I whiled the 14 hours in the ER, what with some time on my hands, I discovered a few simple truths of Hospitals.
Spend enough time in the ER and you too will unlock the secrets to the universe.
The Turtle's 5 Universal Truths About Hospitals
1) 15 hours of fasting will turn a tortilla, sub-par ham, and American cheese into the most delicious meal of your life.
The possibility of surgery was looming. I wasn't allowed any food or drink because of the vast chance that surgery would be done that afternoon. Fortunately we had eaten at a mom and pop diner where I got a big breakfast.
It's getting around 10:45 pm and I'm getting really hungry. So I call in the nurse and ask her if, since there was little to no chance of my having surgery that evening if I could eat. She disappeared, saying that she would ask. Around 11:45 pm I gave up hope and there she was with a cold ham and cheese wrap. Kings don't eat this good.
To my brain, it was kind of like this.
2) If given headphones during a scan and the music stops... STOP THE SCAN!
They took me back frequently for MRI's, CT's, X-Rays... the list goes on. During the MRI, a very loud and noisy process, they frequently give you earplugs or music to listen to through headphones. I'm not usually claustrophobic but the first time I went through one of those just about gave me a heart attack.The music allows me to calm down and go off somewhere else.
They stopped the music temporarily while they loaded contrast into my IV. But when they went to stick me back in the machine they forgot to turn the music back on. I tried yelling and getting their attention without moving too much; I was afraid to mess up the scans.
I should have stopped the scan early on to point out the music situation. But I sat back and tried to grin and bear it. My heart was racing inside my chest the entire time but I made it through. It was only after pulling me from the machine that the tech noticed "Huh! I forgot to turn the music back on..." YA THINK!!!!!
The music is usually better when it's switched on!!!
3) Lies are often more dependable than the truth.
“It was a lie, of course, that it wouldn't hurt a bit. But since adults
always said that when it was going to hurt, he could count on that
statement as an accurate prediction of the future. Sometimes lies were
more dependable than the truth.”
–Ender's thoughts
Ender's Game by Orson Scott Card
Bandages come off, nurses or doctor comes in, checks it out, bandages back on. Repeat. Tape on and off... all night long. My favorite line "This should only hurt a little bit."
4) My poor braincells. DAMN YOU FAMILY FEUD!
The TV was on to Family Feud. If any of you know Family Feud, it's been on so long that it's had 6 hosts since 1976. There are decades worth of the most obscure topics that you've ever seen. I felt I was both learning and killing brain cells at the same time. At least it killed time.
5) "You smell clean... like... sanitary!"
The response from my awesome friend when I got back. Though I laughed it off, this reminded me of all the chemical smells of the hospital. All the disease, all the meticulous cleanliness, all the life, and all the death...all the cleaning products. Though you can leave the hospital the smells and memories never leave you.
Hospital Rooms have that great ability to make you feel super clean and super creeped out at the same time.
I'm on the edge of another choice, one that is not up to me. After a week of doctor's appointments I'm left with the prospect of a few-minute procedure or hours of surgery. All this is in respect to the bubble that's been steadily forming on my back over the past few weeks. I've been patiently awaiting the verdict on whether I'll have another major surgery.
To be fair, I have total faith in my surgeons. I just hope this isn't what they ask once I'm under.
The doctor I saw today was from plastics (plastic surgery). He recommended a drain, guided in to the correct spot with the help of an ultrasound machine. This would be a quick procedure and allow me to leave the very same day. On the other hand if the pockets of fluid that have been collecting in my back are dangerously close to anything vital, they will have to cut me open and clean out the area by hand. This would be far more invasive and keep me in pain for a much longer period.The decision over which route to choose is up to my neurosurgeon, who I see tomorrow.
I thought having concrete answers over what my options were give me some piece of mind or clarity. I admit I'm freaking out less than I was and I'm slightly less frustrated. But that doesn't mean I like it. I feel like in a constant game of Marco-Polo with my doctors, always in search of the final solution. They shout their hints to give me a general direction but they don't tell me exactly where I'm going. It's frustrating, like I'm flying blind.
But brooding over it won't change my fate. While it's true that I have the final say on any procedures done but I trust his decisions, since he's the one who rebuilt my spine from the ground up (not an exaggeration). So I value his word, his insight, and his wisdom. But that doesn't mean I wouldn't value an answer a little sooner! And if he chooses to abstain and not really give an opinion either way, I'll be getting the drain in tomorrow! Wish me luck.
Here at The Turtle Walks I strive to set the bar high and keep the record as accurate as it can be, considering I write whenever I feel like and pretty much say whatever I please. So I want to hereby issue my first retraction. Okay, not really a retraction so much as an update. In my last entry I talked about the bubbles on my back as well as the tunnels of fluid working their way through my back tissue. Thanks to the vacuum pump (Wound VAC) that I've had attached to me, the pockets of fluid had pretty much vanished and the wound had healed all but for a few cm's near the base of my spine.
The problem? A new bubble has started rising out of the top of my back. Again! What does this mean? For one thing it means that I spoke too soon and
I'm not miraculously healed. The underlying infection in my back is
still active and giving me hell.
I've just finished with the summer class I've been taking in New York and will be visiting with my doctors, surgeons, etc. in Baltimore at the beginning of this next week. The bubble takes a while to build up so it's not an immediate threat. This does mean that there is the chance of surgeries, major or minor, in my future.
He ain't kidding.
While I'm not going to let this stop me I am a little sad. Not because I'm worried about surgery (14 and counting) or that it'll interfere with my life (just let something try). No, I'm sad because this means I won't be able to get in the water. While any wound on my back is open (as has been the case since March) I'm not allowed to swim lest I get further infections. Not counting the 2 weeks I was allowed to swim in late February into March, I haven't been allowed to swim since my back surgery last December.
Think about this: My symbol is a sea turtle. What do sea turtles do mere minutes after they hatch and for almost their entire lives. SWIM!!! I know eventually I'll be allowed to return to the water, but until then I'll just have to visit the water while I sleep. Sweet dreams...
I'm finally out of the hospital, which is a relief. I still have the four drains in and I'm waiting for the wound care company to send in a portable Wound V.A.C., a machine that creates a vacuum to close a wound faster. I'm allowed to walk around but that is pretty much all I'm allowed to do. I'm on spinal restrictions: no twisting, no lifting over 5 lbs, and no bending.
No bending! Doctors never let me do anything fun...
I'm mostly just bored. Summer vacation is finally here and I have nothing to do. I'd normally not complain but we're staying in Baltimore for an extra two more weeks. It doesn't make sense to go home yet with all of the doctor's appointments and checkups I'll need. This leaves me in a small apartment with with nothing to do. I can catch up on my favorite shows, read a book, take a few walks here and there, etc. I'm not itching to get out of here yet but I can feel it coming.
On a more cheerful note I was the winner of Johns Hopkins Annual Turtle Derby! Proceeds go to benefit the Children's Center at Johns Hopkins. It's a $10 fee to enter a turtle into the Derby. In my last post I mentioned I was entering a turtle and had named her Calypso.I was never expecting to hear about her again but she won1st place! Sadly I wasn't able to attend because I had been put on bed rest but I won a cool blue ribbon and $100! Since the initial seed money was from my mother I owe her that back but that means I earned a cool $90 from turtle racing. Who knew turtle racing would be so lucrative?
This is from last year's Turtle Derby. I haven't been able to locate any pictures from this years. :(If anyone is able to find any send me the link.
I'll get back to my old self again soon enough. I'm already moving around better than I was and improving every day. Assuming that I actually heal up right this time I'll be back to limping around at turtle pace before you know it.
I'm getting really tired of saying this but I am back in the hospital for surgery again. For those who have been following my progress, it was noticed last Friday that I had a part of my back that was swelling upward. It was not exactly a bubble just yet but there was a good chance it was going to be. By Sunday it was clear that it really was another bubble. It was expanding and it was very squishy.
Sunday we went to the new Johns Hopkins ER. As expected we spent almost the entire day waiting around. They kept the patients occupied by providing cable on a big screen TV and a less than comfy bed. They did finally move me to a room of my own at 4am the following morning. This was the new addition to Hopkins that they have been working on for months. It is really pretty cool. They have a new ER, MRI machine, operating rooms, and tons of different floors for every occasion. I'm on the 12th floor and get a really cool view of Baltimore. The building itself is remarkably pretty.
The surgery was virtually identical to the last one I had in March. They went in and flushed out the whole area, sucking out any pockets of puss that the bacteria would have caused. Plastic surgery closed me up, pulling flaps of muscle from either side, filling in the space. This will hopefully prevent bacteria from growing as they will have no room to grow. They are putting me on different antibiotics to hopefully get rid of the bacteria that may have escaped the surgery.
My surgeons and myself are worried that the bacteria managed to find their way into the hardware in my back. There is some evidence to support this: the fact that these infections on my back crop seemingly for no reason and they've returned 3 times now. It is curable but it very difficult to remove once they've found their way onto the hardware. In the meantime all we can do is to keep clearing out any bubbles that form and try various antibiotics.
For now I'm waiting to heal and see what happens. I have four JP drains
in this round. After the last surgery I had three drains in and said I was
turning into a horse. Now I've got four drains and a central vacuum
drain pump. I don't feel like a horse this time but
instead feel like I'm turning into Doc Ock from Spider Man.
All the surgeries fortunately haven't turned me evil... yet.
On a more cheerful note, I'm entering a turtle into John's Hopkins 81st Annual Turtle Derby. It is a turtle race held by Johns Hopkins every year to benefit Child Life at Hopkins Children’s and the Perkins Day Care Center, a nearby Johns Hopkins affiliate. When my mother passed by the booth for the Turtle Derby she immediately thought of me. It is a ten dollar donation to enter in a turtle which you are allowed to name. I named mine Calypso.
First one that makes it to the edge of the circle wins. Click the picture at the top of the page (or here) to read about Calypso the three legged Sea Turtle.
For now I'm on bed rest while my back heals. I'll make sure to keep everyone in the loop as things develop. All I can really do at this point is wait; waiting of course is the most annoying, tedious, and essential part of the process. Wish me luck and root for Calypso in the Turtle Derby.
It has been a while since I wrote anything. I've been struggling to catch with all the work for school I missed during my stay in Baltimore and now I'm cramming for finals. This is my way of taking a break in between studying. Plus I need to update everyone where I am physically.
My last post, I still had one drain left in my back to get rid of all the residual fluid that builds up after surgery. The drains are now all out but the trouble is not over. Within a week of the drains being pulled a bubble of excess fluid began forming underneath the skin.
We were left with no choice but to cut the bubble open, clean it out, and stuff it full of treated packing material. The packing material will keep the wound clean and soak up all the excess fluid. I am not thrilled by the whole process; the wound needs to be cleaned and dressed several times a day. This has left my skin a mess from all the tape continually coming on and off. The entire process of packing the wound is supposed to delay the closing of the wound while soaking up any pus/fluid that's still leaking.The wound heals from the bottom up much like a zipper closing.
I've been sewn up and stapled up but this is my first time being zipped up.
To be honest I'd rather deal with this wound care then have my tail back again. At least this way I can roll over. I still have the PICC line in my arm, delivering IV antibiotics but I only have to change that every couple of days. Medically things are moving in their usual slow pace while the rest of my life zooms along. But what else is new. I've gotten to like my 'Turtle Pace' and those who don't like going that slow can zoom on ahead. This turtle still has a few tricks up his sleeve.
For those who've been following my progress I got 2 of the 3 drains in my back taken out. The one left in is draining slightly more than the doctors like so I'll get it taken out later this week. So my horse tail is smaller but still there.
The horse tail is annoying because I keep it in the same bag as my antibiotic. This is bad because anytime I want to turn over at night I have to get up and move the bag along with all my pillows. And I turn over a lot at night. This all equals me getting very little sleep because I can't stop moving.
My cats are glad to have me back at home. They've moved from being wheelchair cats to cripple-friendly cats. They love to rub themselves all over my canes and feet when I'm walking. They don't seem to realize that tripping up Dad when he's limping along is a bad idea. Ah well. They've been cute, cuddling with me as I finish up all the studying I missed while in the hospital. They don't seem to mind as long as I'm here to give them a belly rub every once and a while. A good reminder to keep things simple.
As the weather has warmed up I've gotten out and biked a fair bit. This has given a chance to see the turtles coming out to enjoy the fresh spring. Sun, food, a place to sleep... simple needs. On that note I'm going to take a nap and try not to turn too much.
For those who have been following my most recent surgery, I am still in the hospital but there is a chance that I could be released tomorrow. Fingers crossed.
Even though I'll be leaving the hospital I'm taking parts of it with me. The most visible portion is my new tail. And yes you heard me right. I have a tail! It's actually made of the three bulb drains I mentioned in my last post, located right at the base of back. They have the problem of getting tangled up in each other giving them the appearance of a braided horse tail. I'm expecting to start growing hoofs any day now. I can get them all removed when they stop draining, whenever that'll be.
My tail coming out of the back of my hospital gown.
Another thing I'm bring with me is my PICC line. A PICC, or Peripherally Inserted Central Catheter, is a long slender flexible tube that is inserted through a vein in the arm. This is guided to directly outside the heart. This allows the PICC line to be hooked up to an IV, delivering the product to the biggest pump in the body. In my case I'm using it to deliver antibiotics, which need the extra pumping power of the heart to make sure it reaches hard to reach blood vessels all over the body. In addition it allows me to have a permanent IV for the 6 weeks I'll have to be taking IV antibiotics. If I had to get restuck for an IV every few hours I would start to look like Swiss cheese.
The PICC line coming out of my arm.
Finally, I have the staples in my back. I'm no stranger to staples so these do not bother me too much. They're mildly annoying and will need to get pulled out in about a week. They're the least invasive pieces of machinery I have in my body at the moment.
All in all my back isn't looking too bad.
I have to remind myself that this is all to prevent any further infections down the line. And the last thing I want is to land myself back here because I didn't take take care of my new machinery. Now all I need to do is stop tripping over this tail; at least I should be able to use it to swat the springtime bugs away...
Click the horse to see him in action. It will amaze some of you...
In my last entry I didn't know when I was going to undergo surgery. As it turned out I went into surgery the next morning (yesterday). I met with surgeons and a plastic surgeon who were all going to be working together, making sure the wound was cleaned out and closed right. The surgery itself didn't take that long, at least it didn't seem like it to me because I was under anesthesia.
Count back from 100. Here goes. 100. 99. 98.. 97... 96........95.......
I woke up feeling sore but generally alright but with three drains in my back. The surgery went well: the surgeons cut into my back, cleaning out the wound all the way down to the spine. The plastic surgeons moved the surrounding skin and muscles over the wound to seal it shut. The three drains keep the area from filling with any fluid. I'm being pumped with multiple types of antibiotics to keep any more infections from forming.
I have three of these bulb drains near the bottom of the incision.
This whole process is mostly inconvenient to my life on the outside world. I'm missing tons of classes which will make my studies that much more challenging. I knew I was going to miss some school but this is more than I had expected. I'm having to cancel my trip to Colorado to visit my friends and witness the birth of my godson. I had saved up for months to pay for this trip. When my best friend in Colorado said she was pregnant I knew I had to be there for her and her new son. I am still going to visit Colorado but I will probably have to delay it until after my finals in May. And last but not least I'm having to drop out of the play put on by Encore Theater Company, our local community theater. The play Sylvia by A.R. Gurney is about a dog and the middle aged couple who adopts her, and the drama that results. I was cast as the slightly insane marriage counselor who suggests shooting the dog. This was the first time I had gotten an onstage part in a play. I regret having to drop out but I don't feel I can do the part justice if I am gone until right before the play is performed besides not feeling physically up to the part.
Highlights from another theater company's performance of Sylvia.
Stiff and sore I am more or less okay. I've made some short walks to the bathroom but otherwise have been in bed the whole time. I hope to be up and about before too long with the possibility of doing physical therapy at Kennedy Krieger outpatient. It remains to be seen how soon I recover but I am stuck here in Baltimore until the plastic surgeons can remove the drains in my back. I want to make sure all the fluid is gone before I leave because I want to make sure I'm not back here for surgery any time soon.
So many of you have heard (likely through my sister's facebook) that I'm in the hospital again. This is true. Unsure of all the details I wanted to wait until I had more information but there are too many people clamoring for info so here goes.
What I do know is that a little over 2 weeks ago a stranger bubble started rising out of the skin on my back, right along the surgical scar from my surgery in December. My scars had all closed weeks ago so I figured I was in the clear but apparently not. Unsure of exactly what we were dealing with we went to see the doctor. He thought it might be an infection so he stuck in a needle to see if he could aspirate (attempt to draw fluid/pus from the bubble). He couldn't get anything out so he said to keep an eye on it and see him again if anything changed.
And the bubble continued to grow. It started the size of a quarter and continued to grow along the surgical scar. We went to the ER over the weekend when it was clear it was growing with increasing speed. They tried to aspirate it again but this failed.
While we were in Baltimore for a family wedding it became clear that it was growing down and outward and soon would burst if we did nothing. We went into an urgent care center where they tried to aspirate it for a third time, this time hitting pay dirt. Multiple syringes full of pus were drained until she finally called it quits, barely changing the abscess at all. She made it clear that someone needed to clean the whole mess out and she didn't feel comfortable doing it herself.
We waited until I got back to North Carolina so that I could see my family practice doctor, who we thought should be able to clean it out in the office. She sent us to a surgeon, who sent me in for multiple tests before before telling me that the abscess was too close to the hardware in my back for his comfort level. He contacted my neurosurgeon who instructed me to return back to Baltimore and he or one of his residents would take care of things.
And back to Baltimore again.
So after driving up to Baltimore again we waited in the ER. The doctor there did an ultrasound of the abscess and found something that worried both him and I: there appeared to be a small channel traveling down to the spine. Because ultrasounds are not very precise I was put on a list for an MRI and admitted to the hospital.
Now an MRI (magnetic resonance imaging) is a big machine that uses a giant spinning magnetic and a computer to create a detailed image of a person's body, layer by layer. I wasn't even sure if I could get an MRI because of all the metal hardware I have in me. I was assured that indeed I could and that I would get my chance the following day.
After 15 hours of fasting I finally was pushed down to the MRI room. The walls looked bowed out in places and bent in at others. I guess this is probably do to the natural shifting of the building but it gave me the image of a giant machine version of magneto. Finally we arrived and I realized I had had an MRI before. I also remembered why exactly I hate MRI's with a burning passion.
The last time I had an MRI was when I first got moved to Kennedy Krieger. The MRI is longer than a human body and just as tall. When they slip you into the small hole into the center it is somewhat unnerving. What made it worse was that the first time they put my neck in a plastic cage to make sure I didn't move my head, since they were examining my spine from top to bottom. Add to this the pounding noise and I was downright terrified. I've never been claustrophobic but the feeling of being locked in a giant can of Pringles that's being kicked around at high speed is enough to make anyone afraid of small spaces.
Thankfully this time the area they were scanning was low enough so that I didn't have my head locked in, giving me the option to listen to Pandora.com on their headphones. I chose Green Day and happily jammed out in my head to the beats of Green Day, The Red Hot Chili Peppers, and The Offspring. The experience still wasn't fun but it gave me a little relief from the thoughts of giant magnets spinning at high speed inches from my head.
Since no one informed me of the results I don't know if they found anything. I still have lots of tests ahead of me, with the possibility of a week or more stay, and the guarantee of lots of antibiotics. I'll keep you all updated on if they find anything and how any potential surgeries go. But for now all we can do is wait.
In case you didn't know, if you have an open incision (such as the kind you'd get from surgery) you're not allowed to swim. Swimming greatly increases the chance of infection and causes the scar to heal really strangely. My body heals extremely slowly ever since the accident, so the incisions should have taken a month to heal has taken almost 3 months! But finally I'm getting BACK IN THE WATER!!!
The sea turtle has become my symbol in more ways than I had ever imagined: I'm slow and awkward on land but in the water I can dominate. I've been aching to swim for ages now; I always feel slightly incomplete without the water to play in. Besides being a great workout, it loosens all my joints giving me freedom of movement that I don't usually enjoy.
Since my hiatus from the water, I've become significantly more mobile on land. There are however many moves that simply cannot be performed with canes and a gimp leg. In the water these limitations vanish. Suddenly, I can perform headstands, do flips, do karate kicks, and move my body in ways that only bring frustration when I attempt them on land.
The moves I can perform now on land were the ones I was practicing in the water only a few months ago. So the crazier I get in the water now the better I will be able to move on land soon enough. Are you ready?
For 6 weeks I've had movement restrictions, put in place by my spinal surgeon. I'm not allowed to bend, twist, lift over 10 lbs, not allowed in the pool until my incisions heal completely, and not allowed to drive.
Attention Peter:
Do not BEND FORWARD (over 90 degrees)
Do not TWIST
Do not LIFT over 10 lbs
Sincerely, The Precaution Police
(This was put on the back of my wheelchair by my therapists in 2010 after spine surgery.)
The first three I've had in place before so there was no surprises there; the restriction that really got under my skin was not being able to drive. It's not like I had no transportation at all: my mother begrudgingly chauffeured me around Elizabeth City and my friends took pity and picked me up. What I miss is the freedom to come and go as I please. This is all going to change on Tuesday, when all my restrictions are lifted!
I'm not going to go completely nuts, though there are some more complicated maneuvers I wanted to try. I've already tried jumping on a trampoline and working on a balance board. The trampoline was fun but harder than it looked. The balance board was a familiar activity, though this time my therapist combined it with an inflated disk underneath. This changed the balance, reminding me of before the accident. I was a strong skier and a passable snowboarder, and this particular exercise reminded me of what it was like to keep my balance on my snowboard.
Shredding the powder, back in the day
This gave my therapist the idea to try me on the skateboard they had in the gym. It went pretty well, considering I was a terrible skater before the accident (the gimp leg not helping matters at all). It was fun in a way that I haven't enjoyed in a long time. Who knows, you may see me skating down the street one of these days, with a cane strapped to my back for emergencies.
I'll settle for being as off-balance as I used to be.
I'm definitely getting stronger, though I still have a long way to go. The one thing that is guaranteed to improve my mood is I will soon be allowed back in the water, a turtle's natural habitat. The incisions from my surgery were extremely slow in healing, but they are finally healed enough to allow me to get back in teh pool. No matter what how sluggish I may be on land, I rule the waves!
I'm not quite counting the minutes until I can bend, twist, lift, drive, and swim but I'm really close. Three more days, three more days, three more days...
This is the two year anniversary of my accident. Not quite as depressing as the first one, it still stirs up different emotions. I thank my family for providing me with distractions all day, making me forget until almost 9 o'clock in the evening that it was December 29th again.
For those who have missed the last two years, here is a quick recap. Click on the links below to view posts.
My life has changed more than I could have possibly imagined. I was told by one of my doctors:
"You will be ambulatory in a wheelchair but statistically you will never walk again."
Here I am, two years later walking every single day. I remember that when I was first told that my spine was broken and would need to use a wheelchair for the rest of my life, I was in complete denial. I stated to my family that was in the room with me, "I will not be stuck in a wheelchair! And that is it." Though this turned out to be initial blind optimism the words have turned out to be oddly prophetic. I may be using canes and an ankle brace but if this is what it takes then it is worth it.
These past two years have been the most difficult years of my life. I have been challenged physically and emotionally, seeing my world change in unexpected ways. But this is life; whether I had perfectly working limbs or not the world refuses to stop for anyone. Friends move away, relationships come and go, and the sun continues to rise and to set.
Thank you everyone who has gotten me through the last two years. Thank you Mom, who has been there day in and day out since day one. Thank you Dad, who has supported me through all my best and worst decisions and loved me anyway. Thank you my brothers and sister, keeping giving me the support I need to keep going. Thanks to all my extended family, some of you opening up your homes, all of you sending goods hopes and wishes. Thank you Philip, Tony, Kelley, Kayla, Ozcur, Darlene, Steve, Cat and all the other friends who ignored me when I told them I couldn't do something and made me do it anyway. Thank you to my land therapists, my aquatherapists, to the entire staff of Kennedy Krieger, especially theInternational Center for Spinal Cord Injury (ICSCI). Thank you Meredith, Stephanie, Marjory, Moriah, and Brooke, all of you earning my respect and gratitude, most of you earning a permanent place in my head, reminding me of what I should be doing when I walk. Thank you to Mindy and Lynn, for reminding me what a pain I can be and exactly how far I've come. Thank you to YMCA, for giving the turtle a place to swim. Thank you Steve Ackerman, for helping me to get a handbike and getting me back out on the road. Tom McNally, for opening up your home so that I could continue with physical therapy. Thank you to all the orthotists who made the leg braces and ankle braces that are the tools that allow me to walk. Thank you to all of you who have been reading this blog, following me on facebook, or keeping track of my videos.
I can say honestly that I would not have made it this far if it were not for all of you. I hope everyone reading this will remember that no matter how lonely we can get we all have people behind us, helping us in ways big and small. "It takes a village" does not only apply to raising a child, it applies to every single one of us.
