Insights From Inside the ER

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.

Why I Need A New Brace and What Happened in Colorado

When I walk I use an AFO, or Ankle Foot Orthosis. (A fancy name for an ankle brace) This little shell of plastic ends up doing more than its share of the work when I walk. I'll lean on the front to hold myself up, take full advantage of the small spring in my step that it gives me, and unintentionally bang it against nearly every object.

So True! Meanies!

While my old AFO has been good to me, it's time to move on to a new brace. I always feel better if I have a goal, something to work towards. And for the last year or so that goal has been learning to master my current AFO. Now that I've pretty much got that down, I'm finding myself getting comfortable again... and therein lies the trap! Once I'm comfortable I don't work as hard and I stop making progress, at least until I pick myself up and start again. This happened with my wheelchair, my KAFO, and now this. It's time to push on before I start sliding backwards.

My new brace, the ToeOFF. It's lightweight, it's cool looking, and it's something new to work on. What's not to love?

The new brace is called the Toeoff. It's got a sleek design, with only one very strong carbon fiber cable on the side. It gives me support but far less than I'm used to. The one feature that's vastly improved over my previous brace is that it has increased spring in the ankle, which propels your body forward. It's still hard to use and it will take a lot of practice but I'm confident that just like all the others I'm going to master this too. And I can guarantee that once I do my question will be, “What's next?”

Phantom Equipment Syndrome

For update on my health, skip to the bottom of the page.

In a past post, I talked about what's been nicknamed Phantom Wheel Syndrome. I was in a wheelchair for 2 years after my accident. I started decreasing the amount I used it but I didn't give it up entirely until this January. I had to transition from the wheelchair to canes, and I found myself constantly reaching for my wheels out of instinct... only to find them not there anymore.

Your brain makes a mental picture of your body, sometimes including certain pieces of equipment, like my wheelchair... until the wheelchair wasn't there anymore! My brain still had a mental wheelchair which it instinctively relied on. Think on that!

I'm now having Phantom Equipment Syndrome. I was equipped with a V.A.C. Pump that I had to carry around in a bag, which was about the size of an Ipad. I'd remove the strap if I was sitting or if I was in a car to relax my much abused back muscles. My first move whenever I sat up was to put the strap back over my shoulder and go. Thankfully, the wound on my back has healed enough so that the pump is no longer necessary. Yesterday when I got off the couch to go outside the first thing I did was reach for my bag... only to find it not there anymore.

The V.A.C. pump that's been traveling with me since May. Until one day... it wasn't. My brain still had a mental V.A.C. pump. Think on THAT!

While not a limb, my equipment is a constant part of my life in one form or anther. It's part of who I am and for few months that bag around my shoulder was part of me. I won't miss it (I named him Cato from The Hunger Games, take what you want from that) but I will remember it. I can't say too much against it, because there's always a possibility that I could end up using it in the future. Hopefully not any time soon but I thought I'd escaped the vacuum pump before. Only time will tell.

Update:

My previous post on the possibility of surgery turned out to be unnecessary. The only option at the time was to put a drain into the large fluid engorged tissue above my spinal hardware; we didn't end up doing this. They attempted to use an ultrasound machine on the mound on my back to see if they could find any fluid collections they could drain. They found one, but with barely any pressure the collection fled into the tissue. Unless a major fluid mass forms instead of the current fluid filled tissues, the doctors won't touch it.

There's a great chance that all the fluid will be absorbed by the body eventually. Until then I will have a weird looking hump on my back. To accent this particular feature, below it is where the Wound V.A.C. sucked out all the excess fluid; that skin is now sunken in, leaving my whole back marked with interesting geography.

"You know I'm a rather brilliant surgeon... perhaps I can help you with that hump." "What hump?"

I'm otherwise healing up nicely, though I won't be declaring “Mission Accomplished” again any time soon. I hope I heal up enough to go in a a pool or swim in the bathtub warm waters of the inlet sound that surrounds our house out here in the middle of nowhere. Who knows, these hopes and wishes might even come true.

On The Precipice

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.

A Retraction (Sort Of)

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...

Healing

Not to jinx myself but I'm healing really well. The hole in my back, which has been plaguing me for months, is finally closing.

How my medical issues seem sometimes. I keep trying to get away but they just suck me back in.

For those who haven't been following along, a few months ago fluid had built up under my back from an undetermined infection, forming a zit-like bubble an inch wide. There were several clinic visits and 2 inpatient surgeries on the pocket in an attempt to stem the build up of fluid. After my last surgery they put in a vacuum pump on my back to suck out any fluid that may have formed underneath the surface. I've essentially been walking around with an open wound for the past few months. Though it's annoying to be carrying around the car battery sized pump, I'm glad I had it. Fairly recently, due to/in spite of my surgeries, pockets of undermining (fluid filled caverns in my back) that stretched as far as 20-30 cm in different directions had formed underneath the surface. 

Alright mine's not a bottomless pit but it's deep enough to screw with my life.

Though the wound is not completely closed, all of the undermining has been sucked up! It should only be another week or two before I'm allowed to be free from the tyranny of the vacuum pump. The underlying infection, which may possibly go all the way down to the metal hardware in my back, is being suppressed with oral antibiotics. With any luck I'll be rid of it soon. In the meantime, those antibiotics should keep me from developing any more bubbles (fingers crossed!).

Aaaaaaaaand... (pop!) bubbles no more!

This amazing healing is no doubt in part to my complete lack of a social life all summer. I've been getting up, walking, stretching, doing my exercises; but other than school I don't get too far from our apartment. Even if I had people to go see, after I am done with the studying my summer class I don't really feel like doing anything except facebooking, watching shows from the 90's, and taking long naps. To say the least I've been nice to my back and gotten plenty of rest. So here's for the healing power of boredom.

A baby bookworm, taking a well deserved nap.

Now if I would just heal up already! I want to get back to being a brainless 20-something; this whole frail and sickly thing is getting old pretty fast. 

Back on Campus

In one of my last posts I wrote I was traveling up to Albany, NY where I'm taking a summer class. If everything goes well I should be able to graduate in the spring. It is kind of bizarre being back on campus again, though besides the gurgling from the vacuum pump on my back my newest injuries haven't affected my class too much. At least the teacher always remembers my name.

I've been doing a lot of walking lately to the different parts of campus. We park near my class but if I want to visit the library (which I do nearly every day) or go grab food at the cafeteria, it can be quite a hike. At my usual pace it takes me a while to get anywhere.

One of my favorite lines when traveling with someone else is "I only have one pace, so SLOW DOWN!" I am usually yelling that at the backs of  whomever I am walking with. This, in all honesty, isn't completely the truth. I have two speeds: turtle speed and turtle hyper speed. Turtle speed is about the pace of a lazy stroll to anyone else. It let's me focus on staying upright, contracting the muscles I'm supposed to (abs, glutes, leg muscles, back muscles, etc.), and walking in a more or less straight line. Turtle hyper speed is the speed akin to a slow speed walk. Like a spaceship on any sci-fi show, I can only manage this over short distances and it wears me out when I do.

Recently, I've been practicing on these cross-campus journeys to try and maintain turtle hyper speed over longer distances. Only problem with this is that when I tire myself out I tend to catch my feet on things and I loose my balance. Which leads to me picking myself off the ground.

It is good to be back doing something. I'm terrible at self-motivating but if I have something to work towards I am an over-achiever. So here's to new places to go and new goals to achieve. Just slow down for me, otherwise you'll be doing a lot of waiting while I'm working on my goals.