Return of the Bubble

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.

I want SLEEP!

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.

I'm slowly turning into a horse

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...

 

How Surgery Went

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.

An Abscess or Why I Hate MRIs

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.

A Reminder Of How Far I've Come

This weekend I went to my cousin's wedding. I had a blast, dressing up in my best duds. I managed to pull of a dashing purple shirt and tie, the cane I walk with now only added to the look. I mentioned to one of my little cousins that having a cane makes you look classy and he asked “But WHY does having a cane make you look classy?” It just does.

I got numerous compliments throughout the weekend. On my way to the back of the church I got high fives from different excited family members, some of whom I hadn't seen since I was using the wheelchair full time.

It's harder than you might think to work in jazz hands into a wedding...

It was humbling to see so many congratulating me on my accomplishments. These were the people who let me live in their homes when I was newly injured. These were the people who saw me hours after I had been in my car accident, broken and paralyzed. These were the people who had watched as I went out to college in my wheelchair, only to return home after I realized how physically taxing it would be. These were the people who supported me as I went from wheelchair to full leg brace to ankle brace. These were the people who have urged their friends to pray for me. These were the people who have created a network of people across multiple continents, including hundreds of people, all sending me goodwill and best wishes. I am so lucky to have the support system that I do. If I didn't have all of them behind me I wouldn't have made it this far and that is a fact. This is a journey that can be done alone but is better done with the support of family and sprawling network of well wishers.

I'm continuing on, using the strength that so many people have lent me over the years. One of my aunts said that I exuded a kind of strength and a positive attitude; I don't know if that's true but I guess it must be. What I do know is I have seen myself go from paralyzed at the waist to walking, something that isn't going to be the case of everyone with an injury like mine. I do guarantee that no matter what type of injury you have you are capable of more than you think. A quadriplegic can write a novel with a computer, those without hands can paint with their feet, those without legs can run marathons on prostheses. You may not be able to do everything that you could before but find something that is on the edge of your abilities and do it. Once you accomplish your goal find your limits again and push them. You will surprise yourself and amaze everyone around you.

As for me, I'm happy hitting the dance floor at a family wedding. I may look odd but then so does everyone else. After all, a guy with a cane isn't the weirdest dance you will see at a wedding; not by a long shot.

Spring is here! That means biking again!

It's starting to warm up here in North Carolina. We regularly get temperatures of 50 degrees, though generally it's much colder in the mornings and evenings. The flowers, sensing the change in season, are beginning to bud and flower. The trees have yet to notice it seems but they will be soon to follow.

This is the perfect weather for biking, which I love to do at least once a week. My sister, the musically talented Helen Exner, performed at benefit concerts to raise money for any adaptive equipment I might need. That money went toward a new handbike, the best form of adaptive biking for someone in my situation.

 

It has a hand crank that acts as both handlebars and brakes. I'm able to get the exercise I need and the speed I crave all in one. I found out about this through Steve Ackerman, a paraplegic who not only races handbikes but sells them out of his home in Fort Collins, CO. Though he may not be near you, chances are he can ship one to you. You can contact Steve Ackerman at steve@freedomryder.com.

My bike looks like this only painted red instead of green.

Having this cycle has opened up a whole new world to me, one I had almost forgotten existed. For most of college I didn't have a car, getting around by bike instead. I spent countless hours crossing the city to and fro. After my injury I was put on a stim-bike, a machine that combines motor powered movement with electrical stimulation. There has been research suggesting that this type of "Activity Based Rehab" increases function return in some patients. When I was put on the bike I turned on my ipod and daydreamed about biking across town on my way to class, work, or volunteering.

The stim-bike looked very similar to this machine here, though without the arm portion.

Those images haunted me for a long time, with their simplicity, beauty, and the fact that they were beyond my reach for good (or so I thought). When I was finally able to travel the road on my handbike all of that changed; I was fast, I was invincible, I was the MAN! I reconnected with a part of myself that I thought was gone forever.

Though the initial enthusiasm has worn off, I still get excited when it's warm enough to bike. I can bike the trails near my house, seeing parts of the woods previously unexplored. I can get my nature freak on! Whatever it is that you most like to do, chances are it can be adapted for people with various disabilities. Take charge of your life and do what makes you happy!