One Month, One Week, and Two Days Later

It's hard to believe that it's been five weeks and change since the accident - life before the injury sometimes seems like the distant, foggy past, only partly remembered and not entirely authentic. I don't mean that in a miserable, pitying way - actually, a lot of things have changed for the better since the accident.

As you know, I've been on MASSIVE antibiotics since late March. At first, I was on all sorts of anti-bacterial and anti-fungal medications, but I've been on Unacyn since I left the hospital. Unacyn is a combination of Ampicillin, a general anti-bacterial antibiotic much like Amoxicillin, and Sulbactam, which is an additive that protects the Ampicillin from certain bacteria that can destroy it.

The interesting thing, which I haven't blogged about yet since I've been waiting to make sure I wasn't imagining it since I exited the hospital, is that I feel much better overall for having been on a variety of medications. I had a few health problems before my accident. The chief one was some kind of occult sinus pain, which has haunted me since my mid-20s - literally, I've had a case of sinusitis for over half a decade. I've tried everything from oral antibiotics to steroids to inhalers to air purifiers to home remedies to... well, you get the idea - and almost none of it made any difference. I took prescription Sudafed on a daily basis for about a year before my accident, and it was the only thing that granted me any relief. I have no idea why, really, especially when so much else failed. The entire situation was particularly galling as x-rays and CT scans revealed only the mildest of abnormalities, suggesting only slight inflammation that was hardly proportionate to the discomfort and headaches I lived with on a constant basis.

Since I left the hospital, things have been markedly better. Not fixed - I still have an achy face - but not nearly the kind of pain that I would have expected before the accident. I guess some combination of medicines got whatever it was that was causing my discomfort, and killed enough of it to make a big difference in my comfort level. It's really nice walking around and having a headache all the time to distract me. I think also I might have exacerbated the problem by clenching my teeth, which I do at night, and a month of forced relaxation may have helped with that. I'll have to talk it over with my PCP and see what he thinks.

I'm also breathing better. When I was younger, and more foolish (yes, I realize that's an amusing statement given my 'adult' hobbies like eating swords), I was a heavy smoker. For about five years, i.e., throughout college and off and on for a year or so afterwards, I smoked a lot of cigarettes. If some people have a genetic predisposition towards alcohol consumption, then I must have had a parallel susceptibility to nicotine addiction. Anyhow, during that time, my girlfriend and I smoked two packs a day or so. It was no wonder I never had any money. Eventually, I came down with a horrible case of bronchitis or pneumonia - I forget which - but I had to stop smoking for a month because it hurt too much otherwise. When the course of medications ended and I was back to normal, I'd found that circumstance had accomplished what I couldn't do of my own free will - force me to withstand withdrawal and experience life without the crutch of having cigarettes to set the pace for my daily routine. After that, I might have a cigarette or three when out with friends who hadn't quit, and even backslid into daily use for about six months at one point, but in the long term, the spell was broken.

Unfortunately, just because one is finished with a bad habit, the consequences of said habit may be late in arriving. Since that time, I was always aware of the fact that I'd likely permanently compromised my health through five or six years of constant abuse. Although I could look forward to vastly improved health over the coming years as my lungs repaired themselves, I'd still never be at par with those who'd forgone smoking entirely. Indeed, I spent most of my twenties with breathing capacity that wasn't as great as others my age, and my weight skyrocketed and stayed excessive as I ate more to compensate for the lack of a pleasant vice and the elimination of the appetite suppression that cigarettes produce. In addition, I'd probably set the stage for my later sinus problems by allowing myself to live in an indoor environment where smoking was permitted, and by associating with others who smoked as well.

Cut forward several years to the twilight of my twenties, just before my accident. I felt fine. However, after a month of antibiotics and other treatments, I'm breathing better. Something was fixed, subtly - I realize now that there had been a mild, persistent discomfort in my chest that vanished sometime during my stay, and now I could breathe easier and deeper. I have a friend whom I've known since I started college, and we were both heavy smokers - he much longer than I. He quit several years ago as well, but just a few months ago had to go through intense antibiotic treatment for some kind of persistent bronchitis that had endured in his ravaged chest well past his actual smoking days. I suppose I might have been in a similar situation - perhaps my lungs had never quite cleared themselves out entirely, and I was enduring a mild infection or irritation that, without treatment, I would carry for years. After a month of professional care, I was feeling better in a way that simple abstention from cigarettes hadn't been able to produce.

Other health benefits include the obvious weight loss that came with a liquid diet, although that benefit is rapidly vanishing as I stuff myself full of everything that looks appealing and is within reach. Page and I split a giant box of donut holes this weekend, and today I had a foot-long Italian sub. Oh well - I can put on a few pounds, but I hope I can retain my newly-chiseled features for a while.

I'm finally in the home stretch of my recovery, I think. Food and drink aren't a problem, although I can feel them 'sticking' a little in the back of my throat. I think that's just because of some scar tissue. The drainage valves in my neck are gone! They've been gradually removed by Dr. Smith at the hospital, but I think they must have been shorter than we recalled, since one managed to work it's way entirely out overnight this weekend. It was a little gross, but it was a relief since my neck was sore and stinging, especially whenever the drains were disturbed. Having one out meant the wound could heal and I could be less careful with my collar positioning.

The second one popped out today. I called Dr. Smith, since I now had two bits of medical detritus safety-pinned to my neck. After a quick discussion, I dug out a trusty pair of surgical scissors - I was given a collection of tools when I was discharged, in case I needed to perform self-surgery of this kind - and carefully removed both. I'm now suture free, and I'm hoping my neck will look a lot smoother and less angry in a week when the wounds start to close up.

Now, all that's left is the PICC line in my arm. I'm only using one of two lines, since I discontinued TPN. I met with my infectious diseases specialist today, who is managing my antibiotics treatment and stomach issues. Since I'm tolerating food and water, she may recommend that I switch to oral antibiotics at the end of this week, which would mean I'd off the six-hour IV schedule for good, and could take out the IV line. I am very hopeful that this will be the case, since I'd like to not have to keep waking up once or twice a night to set up the IV line.

One sort of holistic benefit of all of these improvements is that I'm much more mobile. I feel strong enough to get around and be active, even though I have to pause every six hours to apply some medicine. Page and I decided to have some much-needed fun and adventure by driving from DC to Brooklyn, NYC this past weekend.

If traffic's light, the DC-NYC trip takes about four hours each way. We set out in the morning, and hit enough traffic that the first leg of our trip took over five hours. We took turns driving, which worked well, and we improvised an IV stand by hooking my antibiotics pack to the ceiling hook of the passenger side of my car. The IV drip took a VERY long time to complete, since it's dependent on gravity and the pack was barely elevated above me, but it was a five hour drive.

We spent the afternoon shopping at outdoor flea markets and indoor craft shows. Page is a crafter by profession - she makes handmade purses for a living - so I was constantly being introduced to artists and other business people. I didn't buy much - a key chain and a belt buckle - but we had a great time browsing and being in an unfamiliar city.

The drive back was a bit of a challenge. It turned out that the hospital had robbed me of my night-time driving ability, in addition to the other deficits it inflicted. I can usually drive for hours, nonstop, in daylight or at night without problem. After a busy day on our feet, I was exhausted, and couldn't manage more than two hours on the road at a time before fatigue kicked in. Well, that's one more thing to work on - it'll be a while before I take any major roadtrips, I think.

This week involves more medical activity - I have another scan and a meeting with Dr. Smith on Thursday - and getting caught up at work. Things had been quiet during my absence, but now that I'm back, we're back to schedule on our various projects. I won't have a free minute through Friday, I think.

That's all for now - thanks again for reading. I know there are ongoing issues with the comments, so if you'd like to get in touch with me, I set up an email account for just that purpose if you don't already have contact info for me. You can write me at rex.libris.blog@gmail.com. I'm also on Instant Messenger as rexlibris2008, in case you're bored and would like to say hello.

Brief Update

Hello everyone - I haven't posted in a few days, as you know. It turned out to be a busy weekend. Unfortunately, I've had very little sleep in the past 72 hours because of an apparent stomach ailment, so my posts are going to be a little terse until that clears up. Nonetheless, thank you for continuing to check in, and I promise a more substantial update in the next 24 hours. The brief summary so far is that I'm perhaps 90% of the way to physical normalcy; Page and I took a daylong tour of Brooklyn, NYC Sunday on a whim, and I've been busy getting back to work while bouncing between doctor's appointments (as usual).

Thanks to everyone for the kind emails.

Back to Work

As much as I've enjoyed this impromptu summer vacation, whiling away the hours in bed watching television and corresponding with all of my lovely readers, I was eventually forced to admit that if I wanted to continue receiving paychecks whilst in absentia from my dimly-remembered day job, I would have to clean myself up, put on a collared shirt, and trek an hour or two out to Ashburn and reconnect with my employer. I was a little wary of returning to the office for a few reasons:

1. I'd probably have to actually do work again. As rotten as my hospital experience had been at times, I was never pestered to meet any of my job obligations - a huge credit to my boss.
2. I'd have to resume commuting five days a week. Without going into a lot of discussion about it, my drive to and from work requires about 2.5 hours a day. You think swords are dangerous? Try risking your life on the DC -> Ashburn 66/Dulles Toll Road corridor every day.
3. There would be Questions. I wasn't sure how or if I'd explain what really caused my absence. Did I want to be known as Rex Libris around the water cooler?

All of these issues were pushed roughly to the back of my mind as I set out Wednesday to brave the hazards of DC's traffic thoroughfares. 35 minutes into it, and I'd just left DC. "This drive is longer than I remember...", I recall thinking. Eventually, the colossus of my employer's main campus swung into view, and I relaxed as I settled back into the start of a very familiar daily routine.

Once inside, I was greeted warmly, and (predictably) peppered with questions. I'll credit my coworkers; they were polite, friendly, apparently only concerned with my immediate wellbeing, and unabashedly curious about the swaths of gauze and tape I'd hurriedly affixed to my surgery site that morning. Unfortunately, I'd been a little too quick; the bandages were poorly taped, and I later realized the ugly valves and angry red wounds had been peeking through the whole morning.

I was given the morning to get settled, and I was left to myself as I checked email, reoriented myself in my cube, and set up IV stands and my TPN sack. Some of my closer colleagues asked questions about my hospital experience and the purpose of my medical accessories. I was happy to talk about the superficial details of my situation, but by mid-day, I could observe a change in the expressions of some of my coworkers. "So," I thought..."do I tell them?" I decided to be honest; if anyone asked me to tell them exactly what happened, I'd reward their boldness and tell them. Otherwise, I'd simply had an accident. A bad cutlery accident. I doubted it was very convincing, but what did I owe anyone? The specifics of my case were mine to share only at will, and anyone who knew me well enough would know of this blog already.

In the end, no one did ask. There was a little confusion, but I think most people gathered that I'd slipped and cut myself badly with a kitchen knife. I feel a little bad for not being as honest with them as I have with almost everyone else in my life, but I couldn't honestly invent a reason why any of my coworkers - almost all of which are virtual strangers, no matter how blandly friendly - needed to know the whole strange story. I think it would have confused them, and possibly done more harm in the long run to my reputation. It's a very conservative work environment.

In hindsight, my only troubling thought is that a coworker might suspect I'd attempted to take my own life. I truly hope no one suspects that, but I doubt I'll ever have a chance to set the record straight unless confronted on the issue.

Overall, it was an easier return than I thought it might be. Life went on without me, but there's still a place for me, and I have enough work to jump back in and stay occupied for a very long time. I am a bit of a strange sight, with my IV stand and collection of medical tchotchkes littering my desk, but there's a simple comfort in having a task to perform. Paradoxically, work can be relaxing after a long, troubled rest.

More Good News

Met with Dr. Smith today. Highlights of the visit:

• The lower drainage tube was removed completely.
• The other two tubes were partially removed, and now only about an inch and half remain inside. These are draining anything around the main suture site.
• The sutures were removed from the lengthwise incision, so now I just have a ruddy scar.
• I can eat solid food! Dr. Smith cautioned me to start with soft foods, like pasta, and avoid anything crunchy and seeds until we're sure solid food doesn't irritate my throat.
• I can stop using the TPN later this week when I feel comfortable with food. I'm going to call Dr. Smith on Friday, let him know how I'm doing, and probably stop TPN use that day.
• I am officially a medical anomaly, on account of the weird way that my throat has healed. I hope to see myself written up in the New England Journal of Medicine in a few months.

Anyhow, I am very grateful to have had such a speedy recovery, and to basically be in as good shape as I was a month ago, despite having such an rare injury. I will be even more grateful when I have my next meal. Tonight, Page and I are going out for dinner - there's a little Italian place down the street that we like, and it has great tiramisu to boot. In the meantime, though - I might order some lunch. There's a good sushi takeaway place down the street...

Regarding Comments

I checked the blog settings and it looked like you had to be a registered Google user to leave a comment. I changed that, and now I think anyone can comment without registering. Please let me know if you have any problems.

Thanks! - Rex

The Week in Recap

I'm back! Sorry, I've been too busy gorging myself on ice water and soup to post lately. I do have a lot to relate, though.

First, an administrative note. I received a few emails from folks who were a little freaked out by the animated sword-swallowing image, as well as some of the medical content. I don't want to make anyone sick while reading this blog, so from now on, if I have content that might be considered graphic (particularly medical stuff), I'll post a link to it so you can click through if you're feeling brave. I will not post anything that I'd consider in poor taste, nor anything especially graphic, but I will try to keep the blog free of unpleasant visual surprises.

That said, here's the update on my condition. I survived Soup Weekend 2008, and after several liters of tomato soup and chicken broth, plus uncounted cups of water and lemonade, I am happy to report that my esophagus is apparently not a porous material, as nothing leaked out of me. In fact, after the first bowl of warm soup, my throat feels almost entirely normal. There was a slight stiff spot in the back of my throat where the injury had been, but by today (Monday), that sensation has vanished.

As you might imagine, I was filled with trepidation when I had that first glass of water. I didn't try it alone; I actually drove to Page's apartment, invited up a friend, and the two of them watched me while I drank. The fear, of course, was that I'd swallow a gulp of water and a moment later it'd pour out of the side of my neck as I started gurgling horribly, and then I'd have to be driven to the hospital and the whole hospital affair would repeat. Fortunately, that wasn't the case. My throat was as tight and stiff as you'd expect after a month of disuse, but everything worked out.

About that administrative note: If you're curious, I posted a picture of the drains and valves that I keep mentioning on a separate site. The picture is a little gross, so fair warning.

I feel very good, overall. I am still a little weak from inaction, but I've been able to lug my supplies around without problem, and can drive without limitation. Not all is perfect, though. I have a slightly sore throat, which I'll ask Dr. Smith about tomorrow, and the valves and drains on the side of my neck continue to be a source of discomfort. They stick out about an inch from my body, and although usually hidden and protected by gauze padding, they tend to ache a great deal. This is because they are being gradually removed by Dr. Smith, as he pulls a little more tubing out of me and replaces the valves each time we meet, and because I tend to roll over and sleep on my sutured side. I don't know how I manage the latter, since the area around the valves is sore to the touch.

Jumping backwards - prior to Friday's announcement, the big highlight was my return to the Palace of Wonders. The Palace, of course, was the scene of my injury.

Page and I had kept up with our friends from the bar and DC performance scene during my hospitalization, and it worked out that the April Weirdo Show - again, the monthly variety event at which I was slated to perform in March - was being hosted this past Thursday, just a few days after my release. The Show always attracts a good crowd, and since the lineup tends to be packed, half the crowd is comprised of that night's performers, or friends of a performer. I knew Professor Sprocket, the MC who had visited me in the hospital, would be there along with other friends, and the chances were good that I'd know the bartenders that night as well. Unfortunately, I still couldn't drink, so I'd have to pass the time with a glass of ice instead of a soda or a beer, but that was fine.

I was nervous to return for a few reasons. Firstly, because I'd suffered trauam there, and the embarrassment of having to withdraw from a show. I felt my gut tighten as I stood in Page's apartment before we left. How would I feel when I saw that stage again? Secondly, there was not just the issue of the place, but the people. Seeing friends was the important thing, but how would they see me?

Before my accident, I'd heard stories of what happened to performers who'd incurred serious injury on the job. Those who recovered returned to hugs and well-wishes from fans and fellow performers alike, but a few faced a kind of chill from spooked colleagues and fans. All of us are daredevils, to varying extents: the appeal and challenge of most of our acts lies in the potential for physical harm, no matter how remote or overstated the actual risk might be. Swords can cut, fire can consume, nails can pierce. Although a little nick or scrape here and there can be an advantage, since we're working hard to convince the audience that it's not witnessing an illusion, neither I nor anyone else in our unusual brand of show business wants to be really harmed. Unfortunately, we're not exempt from the same rules of chance or fate that govern everyone's lives, and occasionally - as in my case - an accident does occur that doesn't resolve in a few minutes, or with the speedy application of a Band-Aid. My accident was easy for me to deal with, since I was too preoccupied with surviving and staying comfortable to brood on the larger implications, but my friends and family didn't have that luxury. Sometimes watching is the hardest task, since you may be required to consider that despite one's best precautions, chance, or fate, or God if you prefer, may intervene to alter your life forever - or end it sooner than you planned.

I don't mean to sound maudlin, since I'm not. I'm supremely glad to be alive, and give credit where it's due to my friends and family, and the superior medical staff of my hospital. Others might not be so philosophical, though, and just as some people recoil from graphic photos of medical injuries, how would people react to me? I was a walking reminder of mortality, if one thought it through, and the last thing I wanted was to dull people's enjoyment and appreciation of my peculiar craft by showing up torn and thin, alive but visibly scarred.

It was appropriate, then, that the first two people I should meet upon walking back through the doors of the Palace for the first time in a month were the two other performers in the area who'd suffered the same injury as I. Charon (pronounced like Karen) Henning and Alexander Kensington were the first sword-swallowers I ever met. Indeed, Charon inspired me to take up this mad pastime; she's the performer who rebuffed my first inquiries about the craft, as I described in my earlier entry, 'The Palace.' Charon had endured the same slashed esophagus I had, although her injury occurred during a taping for a radio segment; she didn't even have an audience to witness her near-death experience! Alex had a similar injury and suffered massive internal bleeding, but lived to see another day. We all have the same scars, long slashes down the front of our throats. As I stood in the entranceway, sunlight streaming down upon my neck as I saw friendly faces push towards me from the back of the bar, it felt like the best company I could be in.

It was great to be back. Charon and Alex had spent most of the past months on tour, so I rarely saw them under any circumstances. We traded tales of our struggles, and Charon mentioned she'd passed my name along to Dan Meyer, president of the Sword Swallowers Association International (SSAI). Sword swallowers are rare, and individuals with esophageal perforations doubly so, so I may be in touch with him to discuss my experience and add to the shared knowledge about explaining these types of injuries to triage personnel and strategies for dealing with the recovery process. I may still join the SSAI, as I'd hoped to do after the Palace show. I've paid my dues, after all.

After meeting with Charon and Alex, I greeted Professor Sprocket, the MC and my supporter in the hospital, and Karen Mitchell, Sprocket's partner in producing the Weirdo Show and a great email correspondent of mine. It was fantastic to see them again and support their show. Other friends present included Malibu and Silver Raven, two fantastic fire performers who appear regularly at the Palace, and dancer Bambi Galore, who works for Page on occasion and produces her own line of headwear for performers.

The rest of the evening was simply fun. I was a conspicuous sight, with my bandaged neck and wrapped arm dangling with IV plugs. Page and I met up with a crowd of gawkers who showed up hoping to see sword-swallowers. They would be disappointed if they expected to catch an act, but I enjoyed a few minutes of minor celebrity as I regaled the bar with tales of my horrific injury and struggle to survive. Sprocket greeted me from the stage mid-show, which validated me, both to myself and to the audience. One of the audience members asked for my number; she's a photographer and wants to shoot some pictures of me in costume with my scars. I could use some publicity shots.

The rest of the week held other highlights after the joyous return to a normal social life. I spent days sipping drinks and tasting soups, happy to have an alternative to the feed bag for nutrition. Page and I made peanut-butter cup milkshakes last night, which was heavenly. I'll have to make more of those... I don't care if I put all that lost weight back on!

The last bit of big news is that I finally procured my late birthday gift to myself. I usually buy myself something nice for my birthday, and since I hadn't spent any money in the hospital, I had a little extra to spend this year. I've decided to take a little hiatus from performing, or skydiving, or wrestling bears or anything else remotely dangerous (besides the usual risk of living in Washington, DC), so I chose something relatively innocuous:



That is a picture of my new Nikon D40 digital SLR camera. I have a little point-and-shoot digital camera which is fine for basic shots outdoors and for recording VHS-quality video, but I wanted something with more control and better overall image quality. This camera came well-recommended by some photo enthusiasts I know, and I got a great deal on it from Photocraft. If you're in the Northern Virginia area and need photo equipment, I recommend them based on their prices and very friendly and knowledgeable staff. I bought the Nikon body and a Tamron 18-250 lens, which I think will be a great everyday lens that will serve me well until I need something more specialized.

Unfortunately, it's been raining every day since I bought the camera, so I haven't had a chance to get outside yet and take pictures with my new toy. All of my indoor shots are of cats, predictably, which I won't bore you with. Hopefully, I'll be able to visit the Arboretum soon and shoot the bonsai for practice.

Well, that's it for tonight - I'll post more tomorrow after my big meeting with Dr. Smith. Hopefully my mouth will be full of food when I post next.

I'm Still Alive!

Hi everyone - just a quick note to let you know that I'm still here and will continue to update the blog. I have a lot to post about the past weekend, and will have new entries up tonight and tomorrow. In the meantime, feel free to leave comments under posts you enjoyed!

Thanks, Rex :)

Oh Happy Day

As I type this, I am eating a tasty bowl of chicken broth and sipping on a tall goblet of ice water. Mmmm, water...

Dr. Smith called this evening - after five, which was surprising - with some interesting news. He'd been in consultation all week with some other doctors about my case, and had come to a surprising conclusion. His review had been prompted by the fact that I was four weeks into recovery from an injury that should have been relatively healed in half that time.

Apparently, my throat wound is doing something that, in Dr. Smith's words, he'd never encountered during his medical career. Instead of healing from the outside-in - that is, from the outside of esophagus in towards the center - my wound had scarred over from the inner surface, and was healing in reverse. I was thus left with an injury that was basically encysting upon itself and shrinking slowly.

Then came the big news: "Well, Justin, I think you can start drinking again. Try some ice water, maybe avoid carbonated beverages, and call me if there are any problems or bad drainage. You can have soup, but just broth, no chicken." My heart stopped, and then leapt - it was a chaotic three seconds of emotion - and Dr. Smith continued: "You can skip next week's scan. Come in on Tuesday, and if everything went well this weekend, you can try solids. I know you're anxious to get off the TPN." Solid food!

What solid food means to me:

Chinese dumplings
Pizza
Salmon steaks
Tortellini with alfredo sauce
Quesadillas
Those little sausages wrapped in crispy dough
Steak tartare
Sushi... spicy tuna rolls... wasabi... octopus...
Bacon

I can't wait!

So, I had my first meal in a month tonight - pictures are forthcoming. I started simply - a glass of water and a bowl of soup. I didn't choke, or cough - there was no pain. Everything works normally, although my throat feels tight. I can feel a small spot in the back that must be the injury site, but it's hardly noticeable.

Tomorrow's plan: Stock up on soups! Soups and drink mixes - I might make lemonade for the hot weekend. Ah, it's like a new world. More to come.

Wednesday Update

In brief - no apparent change. Still waiting to talk to Dr. Smith to get his opinion on things. So, we'll see what happens. Looks like I'll be back on Tuesday, though.

Good news is that TPN schedule is being moved from 24 to 16 hours on the feeding IV today, so I'll have a window where I'm untethered for a while. If 16 hours works out, I should be able to move to 12 pretty soon.

I was going through some papers this afternoon and found some printouts of my CT scans. These images were taken from the series of CT snapshots taken during my weekly fluoroscopy scan. For all of you who have borne with me during this long struggle, here is a picture of the problem that started it all, taken during the first week of my hospital stay:


You can discern the vertebrae on the right and the area where my chin meets my chest (my head was tipped forward) easily. The central white column is my esophagus - it's brighter because of the gastrograffin fluid that I swallow during the snapshot.

You can see a slight gouge, or dip, in the back of my esophagus. That's the wound. The perspective is off on this shot, because the injury is actually a little to my right, but you get the idea. It's a pretty small injury site, but it was problematic enough, obviously.

It's smaller now, and I presume is getting smaller every week. I'll be meeting with Dr. Smith in a few days (after my next scan, which will be a little earlier) and hopefully he can give me some perspective on how my recovery is coming along.

Cat Attack

Not much to report at this time. I'm settling into a schedule of IV treatments, rest, and projects. The big news is that my cat, Fluffybear (not his real name) came home yesterday:


Above: Gaze into the eyes of innocence. Gentle Fluffy is home again.

I hadn't brought him home immediately since I had a lot of organization and cleaning to do, and I was concerned about interference while I was getting used to the IV routines. I was a little nervous yesterday... Fluffy can be a gentle creature, but he likes to roughhouse, and I was a little worried that our fun games of chase-the-wand would lead Fluffy to think that the various IV lines dripping off me were fair game for chewing. Worse, one of Page's cats found a spot on my shirt where a droplet of TPN fluid had falled, and had licked at it incessantly until I forced him away. If Fluffy knew that I was carrying around a bag of tasty sugar water, full of fat and protein, he might try to attack the bag!

We had a few rough patches where Fluffy's animal instincts got the better of him, and he would gnaw and slobber on my IV lines until pushed aside. On one occasion, his exuberance at being home nearly had tragic consequences. A typical evening at home involves Fluffy dragging one or more of his toys to my feet in an invitation to play. This is fine, of course, but Fluffy dragged over one of his wands, which is a stick attached to a length of string with a toy at the end. Fluffy managed to gallop around my feet and under my chair, wrapping the wand's string around my feet and the IV lines. He leapt with joy under my desk and to the window, and I nearly fell completely out of my chair yelling as my PICC line was pulled to the floor. It took about five minutes to untangle the crossed lines, and then I still had to play with the cat, who was doubly-excited now that he was trying to help me untangle the lines (by batting at them, of course.)

After an hour of testing on Fluffy's part and reprimands on mine, I think we reached a compromise: Fluffy was content if allowed to simply sit on the IV tubes. I suppose that was tantamount to 'capturing' the prey without actually destroying it. This arrangement has proved mutually beneficial as I can position Fluffy to pin the line down in specific places, thus preventing the line from lying in the path of my rolling chair (which can snag the line and crimp it.)

I'd had a busy weekend, so I decided to take it easy and retire early. I had to move the TPN backpack onto the bed with me and hide the cables under the sheet, but part of the line would be exposed so long as my arms were above the sheets. I was exhausted, and decided to wake up only long enough to set up the antibiotic IV infusion, and then return to sleep instead of waiting for it to complete. This meant that I would have an IV line running from a stand down to my arm all night, and a bag of refuse next to the bed where I would drop wrappers, spent saline syringes, etc. If there's an annoying activity Fluffy loves more than chewing on things and people, it's rooting through boxes and bags.

I was a little nervous after setting up the midnight IV. What if Fluffy pulled the whole stand down, shattering vials and spilling antibiotics everywhere? What if he chewed through a tube and infused himself with a megadose of Ampicillin? What if he nibbled through my TPN feed line and put himself into a sugar coma? All of these worries nagged at me, but I was too tired to do much. I fell asleep...

I awoke at 6 AM. I was amazed - all of the IV lines were undisturbed. Fluffy hadn't attacked the sack of refuse next to the bed. Instead, he was happily curled up atop the blue bag, back to my side. I don't know how he managed to resist so many temptations, but he was perfectly behaved. He even limited his usual nighttime prowling, seemingly so as not to disturb me any more than necessary. In fact, I realized that his perch atop the TPN backpack had an advantage for me: he was keeping my food warm.

As I type this, we are both still in bed. I am not getting up until my noon IV infusion - I can work on my computer in bed just as well as I can work at a desk - and neither is he. I have to wonder how he knew not to bother certain objects - I suppose he is a more resourceful and considerate cat than I'd thought. Welcome home, kitty!

Home Care

Hi everyone - I haven't posted much in the past few days because of my busy schedule and need to rest. It's also a little harder to sit down and concentrate on projects like this - I didn't have a lot of distractions in the hospital.

Today, I'll try to describe the medical procedures and supplies that I will be responsible for until early May. As you know, I was released from the hospital on Friday, April 11, with an unhealed esophageal perforation. Well, not completely healed, but sufficiently so that I was deemed fit for home care.

The overarching concern for someone with my kind of injury is avoiding infection. This is achieved by:

• Avoiding food and liquid intake by mouth ("NPO")
• Administering IV antibiotics on a regular basis

Latin trivia: NPO stands for "Nil per os," meaning "Nothing through the mouth".

Because of this, I have three rules to observe while my wound is considered unclosed:

1. I am not to eat or drink anything, but I may munch on ice or rinse my mouth with water, provided the fluids are spat out afterwards.
2. I must administer TPN nutrition to myself every 24 hours, and keep the nutrition bag and pump on my person at all times.
3. I must administer IV antibiotics to myself for 30 minutes every six hours, without exception.

#1 is the hardest rule. During my stay in the hospital, I never yearned for food, but I desperately wanted a glass of ice water. I still do, and it's difficult being out in a world where everyone else thinks nothing of drinking whatever they want at any time.

#2 and #3 aren't hardships, but they are inconvenient. We'll start with the TPN.

TPN, or "Total Parenteral Nutrition", refers to the delivery of nutrients via intravenous catheter. It's used when someone has an injury or condition that prohibits normal food intake. In my case, my doctor has developed a mix of proteins, lipids, various vitamins and other healthy things into a bag of white slop that I consume daily. You can see my typical TPN bag below:


If you look closely, you can see things like the various ingredients of the TPN mix, the dosage and infusion rate, and other details. Each pack of TPN mix is dispensed over 24 hours, and must be kept refrigerated until 2 - 4 hours before use. It's important that the TPN bag be taken out of the refrigerator several hours before use, or I could put myself into shock by infusing icy liquid into my veins.

Before use, each TPN bag has to be injected with additional vitamins that my doctors feels I need. Once the TPN bag is ready, I connect it to a small, battery-powered pump that manages the rate of TPN infusion:


This pump attaches to special sensors on the line from the TPN bag, and alerts me if there is anything blocking the line, or when my dosage is complete. The pump is very easy to use, and comes preprogrammed from the pharmacy, so I don't have to worry about altering infusion rates or other settings.

Right now, I change the TPN bag around 6 PM, but that may change to better accommodate my schedule. I may also be able to have the infusion rate doubled, so that I will only be connected to the TPN pump for 12 hours a day instead of 24.

Preparing the TPN for use takes about 10 minutes. Without going into all of the steps, I have to flush my IV lines, add the vitamins to the TPN, attach special tubing to the TPN line and connect the tubing to the pump, change the pump batteries, sterilize everything, and connect the TPN line to my PICC line and start the pump. Afterwards, everything runs without interaction unless there's a problem.

Conveniently, the TPN bag and the battery-powered pump fit inside a special backpack, which gives me some mobility:


Above: My stylish blue backpack. Note the TPN line running out of the side.

Although I managed to lose about 15 pounds while in the hospital, I think the doctors decided to help me regain my muscle strength by saddling me with 12 - 15 pounds of TPN fluid and equipment to lug around each day. I feel like some tragic Greek character who is being punished by the gods by being forced to carry around a heavy weight all the time.

I also have antibiotics to apply every six hours. This has been the really life-altering thing, since the rotation that I've settled on requires me to get up at 6 AM every day. For those of you who know me, this is unheard of. Prior to the accident, I could barely get out of bed at 8:30 AM. The antibiotics infusion only takes about 30 - 45 minutes, but unless it's the weekend, I don't see much point in going back to bed, especially since I'll be working again soon.

The antibiotics come in an unrefrigerated pack that looks like this:


The antibiotics are a little simpler to set up than the TPN. The picture is dim in places, but you can see the main body of the pack, a glass vial, and a plastic reservoir with a spike at the top that runs into the main pack. I start by mixing the powder in the glass vial with the fluid in the main pack by breaking the tip at the top of the vial, and the squeezing the pack to mix the fluid and powder. This activates the antibiotics, since the active mix denatures if left unused. Once that's done, I connect the plastic reservoir by inserting a hollow 'spike' into the pack, and then connecting the IV line which runs from the base of the plastic reservoir to my IV. Of course, in between there is much sterilization, and the line has to be cleared of air first. The line is shown below:


On the right is my arm, covered in a sheath to help me manage the excess of PICC cables. Moving away from the arm, we see a white block; that's a clamp that can be used to prevent fluids from moving along the line. Next is the actual PICC line valve, which is connected to the valve for the IV line. Past the line 'joint' is a yellowish object. That is actually a dial that lets me manually control the flow rate along the line. I can shut the line or open it completely; or set it to one of several preset rates. Being able to shut or open the line is useful when pushing air out of the line or draining excess fluid once infusion is complete; otherwise, it is set to a specific rate while I am hooked up to it. Once set up, I don't have to do anything but wait for a little while.

There aren't any real side-effects to either of these treatments that I've noticed. Everything else seems to work pretty normally.

I'll post more later, once I'm done with my doctor's appointment.

So Tired

This is going to be a brief post. After my first full day of being out in the world, I'm exhausted.

Today involved going through the routine of six-hour antibiotics applications, switching out TPN supplies, going to CVS and filling prescriptions and stocking up on household goods, moving most of my stuff from Page's place and the hospital back into my apartment (i.e., lugging it up three stories), getting started on cleaning up the house, starting laundry, organizing the medical supplies... etc., etc.

Those activities wouldn't be too draining if it weren't for the fact that my body is not exactly in the shape it was when I entered the hospital three weeks ago. When seated, I keep falling forward; apparently, my back muscles turned to mush during my many days reclined in a cot. My legs are burning after taking out bales of trash and moving suitcases and supplies around. Even though I may have lost 15 pounds recently, I gained them back in the form of a heavy TPN backpack that I have to carry everywhere.

Suffice to say, I'm going to sleep in little bit after setting up my final antibiotics IV of the night. I'll post more tomorrow - maybe when I get up at 6.

Day One in the Outside World

As you noticed, "yesterday's" posting was being updated until 6 AM this morning. "Yesterday" and "Today" don't have a lot of meaning in my new medical schedule, where I'm getting up every six hours to infuse myself with antibiotics, and I'm constantly lugging around a backpack full of nutritious paste.

The good news is that I've had a relatively comfortable experience so far. The TPN feed is keeping me hydrated, despite the warm weather; I have much more variety in my choice of sleeping positions, now that the drainage tubes have been removed, and the cats haven't taken too much of an interest in my medical gear. I think they sense something is amiss.

Today (Saturday's) immediate challenges are to document the procedures for using the antibiotics and the TPN, and set up the 24-hour TPN change, which will happen around 4 PM. Once I'm confident about both procedures, then I need to tackle the mammoth task of cleaning up my room, which somehow grew messier during my three-week absence, do laundry, clean up my desk, and generally make sure I have a comfortable nest in which to rest during the remaining weeks of my recovery.

I have another goal, which I haven't really paid much attention to, although it's the whole point of leaving the hospital in the first place: figuring out what to work on now that I'm home. On Monday, I need to get in touch with work, explain that I can't drive yet, and work out a work-from-home plan for the short term. I also need to get back to reviewing for the PMP exam. I'll still have the same challenge I had in the hospital (and before I entered the hospital, really) - how to fill my waking hours when I'm not working. I had plenty of hobbies and time-wasters before I entered the hospital, but I'm not sure how many of them are important, now.

I have been thinking of taking up amateur photography again. I haven't done much with it since college, but I think it would encourage me to continue getting out of the house, and I could take advantage of the natural beauty of the local National Arboretum. Friends of mine recommend the Canon Digital Rebel XTi and a Canon 50mm 1.4/f lens. We'll see - photography is a great money sink. On the other hand, I haven't spent any 'spending money' in the past month since I've been in a hospital and haven't had shopping as a high item on my list of priorities.

I'll update this later. For now, I'm going to keep watching episodes of 'Lost' and enjoy the cooler temperatures brought by today's overcast weather.

Moving Out

EDIT: 4/12/08 - 6:54 AM. Well, this is what my life is going to be like for a month: preparing and applying antibiotics IV drips every six hours. Set up is simpler than I thought it would be, and it takes about 35 minutes for the pack to run through.

I slept better than I thought I would. I was concerned that with the hot weather and the lack of AC, I'd be dehydrated (since I can't drink anything!) I woke up feeling fine and only a little dry-mouthed - the feed bag is keeping me hydrated after all. That'll be the next challenge - making sure we can prepare and set up the TPN mix correctly at 4. At least that's only a once-a-day event.

EDIT: 8:54 PM - What a day. Released at 1:30. Dr. Smith removed the JP drains, which was a good sign - he doesn't expect any additional drainage. I am left with 'valves' in my neck which will come out when the fluoroscopy / scan comes back positive.

Much of the day was spent either slogging in traffic or in training at the outpatient IV facility. Page and I spent three hours learning how to operate my TPN (feeding) pump and my antibiotic courses.

Because of an oversight at the nursing station, I'm currently on 24 hour TPN - I was supposed to be on TPN 12 hours a day, so as to make getting around during the day easier. I'll discuss that with Dr. Smith on Monday and see if we can get that changed to 12 as discussed.

Today's training was grueling and complicated, or at least it seemed that way. I have to basically perform all of the day-to-day actions my nurses were performing. That means fetching ice (and making it, and crushing it), changing my sheets, hooking up my feed bag and antibiotics in a safe, sterile fashion, and in the case of the antibiotics, doing it every six hours; administering my own medication, doing my laundry, taking out my trash, buying my toiletries, and other tasks I haven't thought of yet.

Now I'm home, sitting on a couch with a bunch of cats at my feet, watching my favorite television show (Battlestar Galactica!) with Page. The air conditioning isn't so good here, and I don't have a magic button to push when I want something. Still, I think it will be better than just lying in bed another week, looking forward to nothing but a routine of medication and sleep. I'm happy to be back.

EDIT: 4/11/08 - 10:51 AM - My last nurse came in to update me. Everything seems ready to go, but he is making sure that everyone is clear on the schedule and expectations. Additionally, my representative from the Home Care organization came by to introduce herself, and give me her contact information in case I have any questions. Things are moving swiftly...

Well, today is the day. The nurses have already been in to check on me and let me know that last minute preparations are underway to get out of here. To my understanding, I'm just waiting on Dr. Smith to show up, maybe perform some last minute suture adjustments, and then Page and I will walk out of here around 1:30 to get on the road to Rockville so we can get IV training and pick up my supplies.

I'm excited! I am trying to transition myself to feeling like a normal person who walks and talks and goes places. It's going to be an interesting challenge just getting out of the hospital, and then enduring the drive to and from Rockville.

Until Dr. Smith arrives, my only tasks are to keep gathering belongings, and decide when to shower and get dressed (in street clothes, of course). Even though I still have a lot of restrictions on my life, like being tethered to an IV, covered in tubes and not being able to eat or drink, I really do feel like I'm breaking free and rejoining civilization. Hopefully, this coming Tuesday (or the next) will mean I can remove the feed bag, tubes, and start enjoying some real food and drink.

Thank you to all of my readers so far, I have been amazed at the letters and calls I've received over the past few weeks. I've really enjoyed being able to write back and answer questions about my progress and what my hopes are day-to-day. It's meant a lot to me.

Watch this space! I'll update this entry over the course of the day.

Jailbreak Plans

EDIT: 8:59 PM. I got the news earlier, but just thought to update my blog this evening. I'll be leaving the hospital around 1:30 PM on Friday and will be traveling to Rockville, MD with Page to pick up medical supplies and receive training on the IV machines. Then we'll head back to Page's, where I will probably crash for the evening, reunited with my cat. I'm going to take Friday as easy as possible, and then think about getting my own apartment set up.

It's confirmed: I'll be released from hospital tomorrow, April 11th. Technically, I could get out of here tonight, but I want to make sure the various participants in my release (the social workers, the nurses, etc.) know their roles and the doctor's orders are correct and match up with my expectations before I bolt.

Once I'm ready to leave, it appears that I won't need to do anything until I get home. Sometime after my arrival at home (but within the current day), I'll get a call from the outpatient nurse who is working with my case handler. The nurse will arrange for delivery of my IV equipment and supplies, and then she'll set up a time to come over and train me. Page should be there for the training as well, so I will have a backup. From that point on, I will be on my own with some exceptions:

• A nurse will visit at least once a week to draw blood and check on me in general.
• I'll return to the hospital on Tuesdays for my weekly esophageal scan.
• I'll visit Dr. Smith on Thursdays to discuss my case.

Most of the weekend is going to be spent acclimating to life at home and without constant nursing care. I am a little frightened, since my worry is that there'll be an issue with the IV that I can't solve and I won't be able to summon a nurse to look at it. Additionally, I'll have to provide for myself - no one will bring me ice on demand, or take my temperature. I'll have to train my cat not to gnaw on IV lines.

On the plus side, I'll have true privacy again, and the comfort of an area that is really set up to meet my needs. My apartment is spacious enough to accommodate an IV machine.

I was also told last night that they wouldn't be able to send me home with IV pain medication. It wasn't clear at first what alternatives I might have, since oral medication was not an option as long as my wound exists - but today I got an answer: I'd be given patches. Presumably the dosage will gradually taper off so I'm not left in the uncomfortable position of having to quit anything cold turkey.

I'm going to try to go into the office on Monday. I have no idea what shape I'll be in, but I need to get back to work, explain my situation, and figure out how to ease back into a normal work experience. As much fun as I'm having working on this blog, it's not going to earn me a paycheck anytime soon.

I'll have to start packing soon - this place is as messy as my apartment. Unexpectedly, I think I'll miss this place, or at least the nurses who have worked so hard to keep me comfortable 24 hours a day since my arrival in March. I'll return here once I'm better to thank everyone. For now, it's time to get ready to leave.

Post-Birthday Wrapup

Last night's celebration turned out to be fine one. Page came over late-afternoon, bearing balloons and a suitcase full of presents, and we kicked off the party with birthday hats and noisemakers. I hope we didn't aggravate any of the other patients too much, but how can you have a 30th birthday bash in silence?

After a few minutes of happy reunions and making noise, I settled down to the important business of opening presents. I started with cards from my parents and my grandmother. These were thoughtful, funny cards, and they're now decorating the walls of my room. From my parents, I got two fun gifts - a puzzle in the shape of a globe - it's really spherical - and a curious game based around a cylinder filled with beads and toys. I'll have to try the game out with my roommates when I get back. I look forward to working on the puzzle - it'll give something to do while I sit at home and watch my IV infuser slowly drip, drip, drip.

Next, I tore into Page's gift assortment. Page took all of the gifts home afterwards to keep the hospital room neat, so I can't post pictures at the moment, but I'll update this entry later once I have my camera and the objects handy. From Page, I got the following awesome gifts:

• A pair of painted googles, in the style of vintage welding goggles. Hard to explain without pictures, but they are similar in style to the goggles shown below. I have a hard time explaining my fascination with old goggles, but I love the look of the oversized welding goggles, or the distinctive style of old aviator glasses (think Red Baron-style frames.)
  
  
• A beautiful shirt, short-sleeved, similar in style to the Guayabera shirts I wear constantly in warmer months. This shirt is much more ornate, though, with beautiful stitching and a great collar.
  
• An adorable hand-made, stuffed hedgehog. I'm fond of hedgehogs, and hope to have one as a pet someday. Until that time, Page buys me hedgehog memorabilia, which is almost as good. I also got a magnetic desk hedgehog to hold paperclips with.
• A fun handbook on how to assemble a robot army to defend against invasion from outer space or other threats. I haven't had a chance to read much of the book, but I like the art style a lot. Amazon link.
• The piece de resistance: A SNOOPY SNO-CONE MAKER!
  
  
  I had one of these as a child, like so many others. I hadn't thought about it in years until this hospital stay, when all I've been permitted to eat is crushed ice. I'd joked to Page that it would be great to have a sno-cone machine, since I could mix in any flavor I wanted and still be within the prescribed limits of my doctor's orders to not put anything in my mouth besides crushed ice.
  
  As I fielded phone calls from family members, Page set up the machine and started making the first round of sno-cones using crushed ice from the nurse's lounge. The machine worked perfectly! I sat back and enjoyed a sno-cone and some pleasant nostalgia at having one of my favorite childhood toys come back to me in my old age.

We were soon joined by several nurses who'd come by to perform routine tests, or simply wish me a happy birthday. We couldn't convince them to put on party hats, though - too bad. We had a surprise guest in the person of Dr. Smith, who smiled approvingly at the Snoopy Sno-Cone Machine and the ongoing festivities. Dr. Smith had some serious business to discuss - I confirmed that I did want to return home this coming weekend, and he explained that various nurses and social workers would be by on Thursday to coordinate my release and the delivery of my IV supplies and training. One issue that came up, and still hasn't been resolved, is how to handle my pain treatment after I leave (since they can't send me home with a hydropmorphone IV, nor can I ingest anything.) We resolved to sort those and other issues out on Thursday, since my party was in full swing and I was much more interested in wearing goggles and birthday hats than speculating over the details of my impending release.

We were joined shortly by two surprise guests: Professor Sprocket and Karen Mitchell. Sprocket is the MC and organizer of the Weirdo Show, the monthly variety revue at the Palace of Wonders. As you recall, Sprocket gave me my performance slot at the March show where I received the injury that put me in the hospital in the first place.

Since my injury, Sprocket and Karen have been ceaseless in sending me supportive, funny emails that have helped keep my spirits up and keep me in contact with the ongoing local scene. It was great to have both of the arrive unexpectedly - it gave me a chance to talk about the accident with Sprocket and make sure we were both 'on the same page' about things, and to catch up with news about the DC performing arts scene. Page and I are both looking forward to getting out of here and getting back out into the clubs and bars to see our friends perform again.

I'll post more later with additional birthday details, and plans for tomorrow's 'jailbreak' from the hospital. Stay tuned!

Birthday!

It's my 30th birthday! I could never have anticipated spending it like this, recovering in a hospital cot from a sword injury. I'm not bitter about it, though. Most of my birthdays are pretty low-key affairs - I'm happy to go out for drinks or dinner with a few friends, because on my birthday, that's what I'm grateful for - having friends. I can buy my own presents :) Since my hospitalization, I've received a staggering amount of messages from family, friends, well-wishes, and church members, some of whom only know me via prayer requests. To anyone who's reading this and has sent me an email lately: Thank you. My birthday is going great, solely on account of the concern and attention I've received over the past few weeks.

Today started with some special events. For the first time in three weeks, I showered! That's not to say I haven't been bathing - you can do a lot with some non-rinse soap and a few hand towels - but there's nothing like standing in a shower under a hot spray for 30 minutes after weeks of patchwork cleaning. The sutures are sufficiently healed, so I can get them wet - only the PICC line site has to be kept totally dry.

Not only did I get to shower, I got to wash my hair. Laugh if you want, but my hair was in a bad way. If you'd reached out and scritched my head with your eyes closed, you might think you were petting a terrier. My hair was akimbo, flung in all directions. With a little (ok, a lot) of soap, I managed to get my hair clean, and then dried and brushed back. To complete my mission of normalcy, I tried shaving, especially around the sutures. This task was much easier to perform with the stomach pump out.

After about 30 minutes of work, here I am:


The rest of the afternoon will be spent answering emails and thinking about how to organize my return to 9-5 life. I'll update this blog later after Page comes by and I open presents.

Tuesday Morning Anxiety

Tuesday mornings at the hospital feel a little like Christmas - there's a hum of excitement in the air, and you know something special is waiting for you just around the corner. In my case, I have another fluoroscopy scan of my throat this morning. The results of that scan will determine whether I can start drinking and eating this week, and whether I'll be released this week as well.

I've been disappointed on the past two Tuesdays, so I refuse to get too enthused about this. I've resolved to be stoic and to accept the possibility of success of failure without getting overly emotional. I would really like to get out of here, though.

Watch this space! I'll update it later with the outcome.

EDIT: 11 AM. Got back from the scan. I've become a familiar face in the radiology department. There's still a small injury, but no idea whether it's considered small and removed enough to be sent home. Curiously, just after I got back in my room, I received a call from the discharge desk. They were under the impression that I'd be released tomorrow, so they needed to complete some questionnaires over the phone and give me some information about the treatment facility that would be assisting me with my IV. So I have no idea what's going on.

EDIT: 1:49 PM. Still no update.

EDIT: 4:02 PM. Still no update. I'm going to grow old in this place.

EDIT: 6:45 PM. Dr. Doe arrives. The 'leak' (that is, the wound) is not healed, which the doctors apparently thought it would be. It is very tiny, though.

We're not sure what will happen now, since apparently Dr. Smith and Dr. Doe didn't have a Plan B. My suggestion, and Dr. Doe appears to agree, is to go ahead with the liquid and food test tomorrow, and that will determine whether I need the TPN feed bag when I leave. It looks like getting out of here tomorrow is still on the table. Sitting on my butt here for another week is out of the question, as there's no reason to remain here when the IV equipment is portable. Dr. Doe seems to think that Dr. Smith will need some convincing. I will probably speak with both of them tomorrow morning.

EDIT: 9:00 PM. Dr. Smith arrives. He flatly states that I need to stay another week, just as before, and wait until Tuesday for another scan. I'm not surprised, exactly, but I'm not going to just let it rest at that. Before I can get started with an argument, though, he does say he can do something to lift my spirits: he'll remove the stomach pump. Now. I'm a little surprised - I thought there'd be more ceremony to it - but there's nothing, you just gently pull it out. It was another novel, uncomfortable sensation, but those are becoming commonplace here in the thoracic ward.

Dr. Smith and I discuss possible causes for the slow healing of my neck injury. We both surmise that it may be because of the drainage tubes which have been causing constant, mild irritation for me since their installation, and are sharing space with the injury. The plan, then, is to gradually pull the tubes away from the injury site. Dr. Smith says he can do it now, if I like, although I haven't had my pain medication. Why not?, I think, and he walks off to get a suture kit.

While he's stepped out, I try not to let the disappointment flood out of me, but I can feel it seeping around the mental blocks I've erected in my mind. Stoicism only goes so far, but I'm having visions of a very dull birthday. I can feel the bitterness in my eyes, and I know it'll be visible on my face when Dr. Smith returns. When Dr. Smith returns, I am on my laptop writing a letter to my family that lets them know I'll be here another week.

I'm glad I didn't finish the letter by Dr. Smith's return, though. In an unusual reversal, he acknowledges the truth of the situation: there is no real reason why i should be confined to this hospital cot any longer. The IV is the important thing. So, he offers to let me go home in a few days, if I want. Caveats: I'll have to use the IV for food and medicine. In the hospital, I'm being fed 24 hours a day, but at home, we can double the infusion rate for the TPN feed. It'll make social planning a challenge, but if I work at home, I can run the feed IV during the day, and keep the night free so I can go out.

Naturally, I won't be able to eat or drink anything (except munch on ice), and I'll have to figure out a suction alternative. Yet still, the prospect of going home seems too good to pass up. I think it'd be therapeutic just to be back in a comfortable situation - so long as I can keep Fluffybear from gnawing on the IV lines!

The best part, of course, is that I have some good news to share tomorrow on my 30th birthday. I can't wait! I'm happy I survived this long - I'm definitely going to play it safer for the next decade, I think.

The Perils of Recuperating in a Teaching Hospital

When I was first admitted to the hospital, I was told that this was a teaching hospital, and was I OK with that? I was, I said; I envisioned doctors being trailed by the occasional student, who would be asked technical questions about my case as an exercise, just as I'd seen on ER. That was the case, in fact; several very competent young doctors-in-training came in and offered their best guesses at some diagnoses and other issues, and invariably the doctor agreed with them. So the med students are off the hook. On the other hand, it didn't occur to me that I would be victimized by nursing students.

Apparently, nursing students are free to torment helpless patients without the direct supervision of a trained, licensed doctor. During the course of my stay, I encountered at least three student nurses. One of these was completely competent and gets nothing but praise from me. The other two, well...

My first sour encounter with a nursing student occurred at about 4:15 AM. Nurses, as a courtesy, will knock and wait momentarily before entering, but if they have a task to complete and you are just one of several patients they need to see before their shift is complete, then your sleep schedule be damned - they'll wake you up. So at 4:15 AM, I am doing my best to awaken. I am bleary eyed, slumped awkwardly in my cot, my throat aches because the stomach pump tube has resettled during the night, my mouth is dry and all of my ice cubes from last night have melted, the IV machine is beeped inanely, and I am trying to sit up and orient myself so you, the nurse, can check my blood pressure, oxygenation levels, and my temperature.

At 4:15, a new face entered. A young fellow. I struggle to be pleasant and mumble good morning - it sounds more like, "Grmf magging" - and start working on sitting up in bed. The nurse - we'll call him Mario - smiles, says hi, and walks over to my left. So far so good, but I do notice the "Montgomery College" patch on the left sleeve of his shirt. Are you a student, I ask. He replies yes, and I notice a bad sign - he's nervous. At least he's not drawing blood, I think. We chat a little as he struggles to wheel in his diagnostic machine. He nearly sends my laptop flying to the floor, but I manage to twist and save it, a phenomenal achievement for the time of morning and how long I've been awake. I start to think this is the first time he's done this.

Now, there is a pretty fluid ritual for getting these routine diagnostics done. I sit up, I roll up my sleeve, you apply pressure cuff and then oxygenation clip to one of my outstretched fingers. Then we deal with the thermometer. This should have been the procedure, but instead, the new nurse decides to add a new step in and adjusts my bed.

Now, I've described how I learned to operate IV machines and suction devices. Those were easy. The bed that I'm on is something else. It has no less than four control panels and two remote controls, each with some degree of overlapping features. There are no words on the bed, only a series of vague pictograms depicting the associated action produced by pushing a particular unmarked button. These buttons can raise or lower my bed, or tilt it, or raise or lower specific parts of the bed. The bed can lifted all the way to the ceiling!

Because my high-tech hospital bed is so fiendishly complicated, I don't want anyone to touch it but me unless they have a very good reason to. Unfortunately, my nurse - who is short - decides to press a button and raise my bed. I go shooting up a foot into the air, and he begins his process. Fine, I think. At least he didn't change any angles. We conclude the vitals-taking - it's 4:25 now - and he decides to try to put the bed back down again. Unfortunately, he doesn't know how to.

The nurse does the worst possible thing in a technological crisis, which is to press all of the buttons in hopes that one of the buttons will produce the desired result while undoing the effects of pressing all of the other wrong buttons. What the nurse managed to do was elevate my feet a good foot and a half about my head. Picture me, as I have described myself. Take into account the fact that I have an upset stomach, and a stomach pump which is ostensibly pumping things upwards. Blood and gastric juices are now sloshing their way towards my head, and I am gurgling furiously at the nurse to put me right back down this instant and go find the head nurse and tell her I want my pain medication stat! The nursing student does exactly what any freaked-out student in his position would do - he flees. "I will tell the nurse!", he chirps frantically, and bolts from the room.

Time passes. In about two minutes, I start hollering and hammering the Page Nurse button on the side of the bed. I can feel my head turning red with pressure, and my stomach losing its struggle with gravity. Finally, a real, certified nurse shows up, squawks in horror, and starts attempting to decipher the cryptic runes on the side of the bed. Apparently, no one has been in this position before.

With mere moments to spare, we figure out the mystery of the mechanical bed: Although there is an 'elevate feet' button, there is no button to produce the opposite effect. Instead, the solution is to raise the bed all the way to the ceiling, where it will gradually flatten itself, bringing head and feet level. Then one can press the 'lower all' button, and gradually bring the bed down to the floor.

A few minutes later, I had my pain medication injection, my stomach settled and I went back to sleep, only to be interrupted two hours later by another nurse interested in my vital signs.

Coda: I never saw Mario again. I hope he hasn't trapped anyone else in an upside-down arrangement. Two nights later, a second nursing student came in and did the exact same thing. Fortunately, I knew how to fix the problem, so the student left a little wiser after the experience.

The Long Interval

With the shift to the private suite on the fourth floor, I entered the penultimate phase of my hospital experience (before my actual release.) Days started to blur into each other as I was left alone for hours at a time, free to read and write, or find other ways to pass the time between the all-important Tuesday scans.

For the most part, I was only dimly aware of what was going on outside of my room. The nurses occasionally told me about particularly unfortunate cases, or whether the day was especially busy or placid, but I never ventured far beyond my own door. This was due in major part to the fact that I looked like a monster. Without haircuts or shampoo, my hair had grown and blossomed without restraint into a massive red tuft. The sutures and pipe insertion points on my throat were red and bulging; I looked like I'd be stitched together from spare parts, like an Irish version of Frankenstein's monster.

Every night, Page would visit me for a few hours to watch a few episode of a television show. Although I rarely watch television on my own, Page and I have a long tradition of spending evenings in and watching (and commenting on) a few select shows. While hospitalized, Page and I have been working our way through Lost and Dexter. At her recommendation, I'm also watching Firefly, which is apparently a hybrid sci-fi/western series that only lasted a single season.

For my upcoming birthday, Page and I had two major events planned: a trip to San Francisco, and dinner at Minibar. Unfortunately, I've had to cancel both, as I've been unsure of when I'll be released, and when I'll be able to eat solid food again. As I type this, Page is in SF now, and I miss the company. It's a real pleasure to sit in comfortable silence in the dark and watch a compelling show, especially when you have all of the back episodes on DVD and don't need to wait week-to-week for the next installment.

I'm also getting some reading done. I expected to read more fiction, but I haven't been able to muster interest in anything beyond Stanislaw Lem's The Futurological Congress. Lem is one of my favorite authors, one whose work is praiseworthy for many more reasons than simply being well-crafted 'science fiction'. This particular book is a vicious satire of government and professional conferences; I've had to put it down, though, since its hallucinatory themes are a little too close to comfort, considering my medical situation.

My mother, who is working on a Master's degree in the sciences (I forget what field, specifically), shipped me several of her textbooks, all of which are nonfiction. I'm finding science topics more compelling than fiction, lately. I'm currently reading Plagues and People, by William H. McNeill. I haven't got very far in it, but so far it seems like a cogent attempt to explain aspects of civilization's development through the impact of diseases.

The hospital does not provide free wi-fi, so my heart goes out to anyone imprisoned in this place with a laptop and no source of an Internet connection. Fortunately, I have a cellular card for my laptop that gives me a wireless connection, so I can update this blog, check my email, and so forth. Unfortunately, it's not fast enough to listen to many Shoutcast internet radio stations, so I've had to download podcasts and listen to my existing stock of music if I want a soundtrack for my days besides the incessant clicking and wheezing of the IV machine. For Podcasts, I tend to listen to a lot of science-themed shows, as well as talk radio and a few music-themed shows. I tend to switch my lineup around weekly, listening to just about anything that touches on a topic of interest to me. My current lineup includes:

• The Skeptic's Guide to the Universe
• E.V.R. - Minimal-Elektronik Plus
• Wait Wait... Don't Tell Me!
• NPR: Religion
• this WEEK in TECH
  
• Capitol Hill Baptist Church Audio Podcast
  
• WNYC's Radio Lab

Since I have the room to myself, I can also afford to play the music I like at all hours. Like anyone, I'll tell you that I think I have broad tastes in music, but I've really only been listening to a lot of ambient and downtempo music since I got here. I haven't got the energy or mood for a lot of uptempo stuff. Some of what I've been listening to includes:

• O Yuki Conjugate
• Alio Die
• Mike Oldfield
• Sam Rosenthal
• Attrition

(Yes, I listen to a lot of Projekt Records alumni.) Because I'm a nice guy, I posted a collection of a few tracks I've been listening to lately. It's available here (note: you need to enter the requested text and wait a minute before the download starts.)

Once I moved to the fourth floor, I began to settle into a more predictable routine as my condition stabilized. I could look forward to a nurse taking my vital signs at 4AM and 7AM, just before shift change, and then every hour or two until about midnight. If the day wasn't too hectic, I'd try to talk to the nurses about their work, and how the other patients were doing, or ask them to explain how various pieces of medical technology worked. That last activity turned out to be supremely important.

When I first moved to the fourth floor, I had no understanding of how the IV machines or the stomach pump worked. All I knew is that I was tethered to a heavy machine on both sides of my body, and if I needed to get up for any reason, or if a machine should start beeping loudly in complaint, I'd have to the page the nurse's station and request assistance. Sometimes a nurse or tech would show up in five minutes, more often within half an hour - and on one or two occasions, never. So, over time, I learned to operate the machines. I could start, stop, reset and troubleshoot a finicky IV (and they were all temperamental machines), and disconnect it from the wall so I could amble about freely. I learned how to disconnect the stomach pump and seal off the tubes (verrrrry important) as well. Being able to complete these activities meant that for the first time in over a week, I could get out of bed of my own volition and use the restroom, or walk to the window to look at the world below.

After the second Tuesday scan, the decision was made to provide me with some kind of nutrition. There had been some faint hope that I'd be out within the first week, but after a week and half, it became clear that my stay would be an extended one. By the start of April, I had to receive the following substances intravenously:

• Fluids
• Various antibiotics (Vancomycin, Unasyn)
• Total Parenteral Nutrition (my feed bag)
• Dilaudid (a.k.a., Hydromorphone)

To accommodate each of these substances, it was decided that a PICC line should be installed. PICC lines have the advantage of reducing the likelihood of infection and trauma by providing a semi-permanent set of 'input' valves to my veins that can be used for injecting all of the above subtances.

The installation process took about 45 minutes. Essentially, the technician had to thread two IV lines through a series of veins until the tips of the lines arrive at the heart. One line is used exclusively for food delivery, and the other for everything else. Once that was installed, it became a much simpler process for the nurses to inject things, and it became easier for me since I didn't have to worry about a constantly changing IV site and having to receive needle injections for one-off applications of medicine.

Once the PICC line was installed, I got a new toy: a drip feed for the Dilaudid. Not only did I receive a constant trickle of pain medication, but I could summon more of it using a 'clicker' every 10 minutes. After the first week, I came to rely upon the Dilaudid to relieve the discomfort of having various tubes in my throat and chest, and an abraded, dry throat which I could only partly wet with the ice cubes I was permitted to chew on.

When I had the opportunity, I spoke with the nurses about their lives at the hospital. I wasn't interested in knowing details about other patients, nor would I think appropriate to ask, but I did hear stories about patients from other floors. Knowing that there was a young lady covered in stab wounds to her torso, or that there was someone my age suffering in the Oncology ward did a lot to quiet me if I was feeling frustrated about my situation. Mostly, though, I'd ask the nurses what they enjoyed about nursing, and how the job treated them. The responses were unanimous: Each nurse stayed with the job because of the satisfaction of being able to help someone in a direct, physical way, and because it made them happy to see a patient recover and leave the hospital. At the same time, the nurses all agreed that this particular hospital was an extremely challenging environment, perhaps too challenging.

I spent an afternoon reading about the nursing profession (since I had encountered some male nurses during my stay), and contemplating whether it would be something I would be interested in as a career change. I've set the idea aside for now, though - as Page pointed out, I've never tolerated human foibles very well. I'm not sure I completely agree with that assessment, but I don't know if I'm made of the stuff needed to be a patient, successful nurse.

The days pass in a homogeneous fashion as I settle into a rhythm of tolerance for the constant medical evaluations, questions, and the stretches of solitude. The days themselves are broken up by intervals of pain medication. For the most part, the only quality to distinguish one day from another is its relation in the calendar week to Tuesday. I've been at the nadir of my spirits Tuesday afternoons, as I found out the wound hadn't sufficiently healed and that I would need to remain an additional week. Gradually, an arc of anticipation builds up, until the next scan is performed the following Tuesday. And then the cycle repeats, and continues to repeat.

Trauma Center

After my initial triage and surgery in the ER, I was given a place to rest in the Trauma Center on the third floor of the hospital. Normally, I would have been lodged in the Thoracic ward, where Dr. Smith presided, but they were too full to take me. I was moved into a shared room with another patient, and I began my recovery.

My new nurse, Jane, explained the facts of my case to me. There were several medical issues that the nurses and doctors were concerned with:

- The actual injury. Because of the reality of infection, the wound site had to be kept as clean as possible. A tube attached to a pump had been slid through my nose, down my throat, and into the pit of the stomach. This tube constantly pumped out the contents of my stomach, so as to minimize the likelihood of reflux or bile reaching up to the esophagus. I was also given Nexium to reduce the irritation to my throat caused by the tube.
In addition, I was forbidden from swallowing anything under any circumstances. This included saliva, water, or any other fluids. To help me achieve this, I was given a suction device that I could use whenever I needed to empty out my mouth. The suction device was basically a wand attached to a long hose.
- Infection. From the doctor's standpoint, infection was a certainty, not a possibility. Human saliva contains hundreds of different types of bacteria, some of which could cause serious problems if they infected a wound. I would be on constant IV antibiotics for the duration of my hospital stay (and probably longer.)
- Nutrition and hydration. To begin with, I was fed nothing, but was given basically sugar-water via IV line for the first week of my stay. I was also given additional fluids to make sure I stayed hydrated in spite of my inability to drink anything.
- Chest swelling. My injury had resulted in edema, where fluids such as blood and pus, as well as air, had penetrated into the interstitial spaces of my lungs and chest. I had very little breathing capacity after my accident, and breathing, coughing, or clearing my chest was excruciating. To alleviate this, a series of drainage tubes had been installed in my throat and chest.
- Pain. As you might imagine, I was in considerable discomfort at first, and would remain in pain for the duration of my hospitalization. The pain resulted from the injury, the chest and throat swelling, the surgery sites, and the rigid plastic hose that ran from my stomach to the pumps. To combat this, I was given shots of morphine every two hours.

My first room was about the size of a small hotel room. The room contained a sink, a small private bathroom, and was equipped to accommodate two patients. The room was divided down the center by a curtain. I was given the window view, which was nice.

My first roomate was a hysterical man who had apparently been struck by a car. I never saw him, separated as we were (as I was totally immobile). He spoke in a weird patois of Spanish and gibberish that rarely made sense. I didn't mind him - he never spoke to me.

My parents arrived on Sunday. I don't remember much about our initial conversations, except that they had a lot of questions for the doctors about my prognosis and what kind of tests would be performed. My father seemed unusually fixated on the results of my 'cultures'; he was interested in knowing what infections I was developing. My parents, to their credit, were nonjudgmental, simply curious and concerned. My father left on Tuesday, satisfied that I was in competent medical care. My mother stayed until Thursday.

Because I was getting so little sleep, I had to stagger social visits. Usually my parents would arrive in the morning, then Page would arrive in the afternoon with some overlap. It was simply too draining to try to carry on conversations with three people and a nurse for hours at a time.

I was not the best patient I could have been. I felt profoundly annoyed at the fact that I was in the hospital at all, and doubly so at the various impositions placed upon me. At least every two hours, a nurse or a technician was coming by to listen to my heart, take my temperature, blood pressure, and oxygen levels; check my urine output, give me a shot of morphine, administer fever reducers, or simply come by and check on me. The constant interruptions took a toll on me. By Tuesday, I was having waking dreams whenever I lost focus on someone or something. In my dreams, I'd stand up from my bed, get dressed, walk outside and resume my life. The visions were so authentic that I was jarred and saddened when I'd suddenly twitch and wake up, still bundled up in my cot.

I had a sort of breakdown Tuesday night. I remember it clearly, as my nurse Jane crashed into the room in her grand style, anxious to check my vital signs for the twelfth time that day. "Jane," I moaned, "I need sleep! I haven't slept more than two hours at a time since Thursday! You have to go away and let me sleep!". I was furious, and mad - between the pain medication and the lack of sleep, I couldn't tell what was real anymore. Patiently, Jane hovered above me and explained that for the time being, the interruptions had to continue. My temperature was swinging wildly and the fluid in my lungs was reducing my oxygen intake to 80-85% of what it should have been. They left me alone a little more that night, though - I got four hours of sleep.


Above: The author in his cot. Note the sutures where the drainage pipes were placed, the short drainage tube of yellow rubber which drains the area around the main drainage pipes, oxygen tube above my lip, stomach pump tube through my nose, and the pair of tubes extended from the top of my neck to Jackson-Pratt drains.

Jane, my nurse, was a memorable character. She was tireless and completely unmoved by my stated desire to be left alone to lie in bed. If Jane felt I needed to walk on shaky legs for 30 minutes a day, she'd force me. If I whined about the injustice of waking me every few hours for tests, she'd simply pull out the clipboard that contained my track record for vital signs, and point to instances where I'd had a temperate of 102, or my oxygen utilization had dipped below 86%. I credit her with saving my life, though. Her constant vigilance meant I had immediate care from a team of doctors when I flew into a sudden fever at 4 AM. She watched patiently while I painfully struggled with an inspirometer to regain lost lung function (I had about an eighth of my normal lung function immediately after the surgery.) Jane helped me wash up, held me by the arm and walked me up and down the hallways in aching exercises, and continued to check on me after I'd later passed into the care of other nurses.

In some ways, though, Jane seemed to be a product of her environment. As troubling as my injuries were, I belonged in an environment that provided specialized care. The trauma ward was synonymous with mayhem. Daily, I heard whispers about gunshot patients, or sad victims shuddering in the burn ward units next door. Jane was never relaxed, and she often seemed to ignore questions or misinterpret things that were said to her.

I spent the next few days shuttling from room to room as new patients moved in. Because I was at special risk for infection, I had to be kept away from patients with infectious diseases, such as MRSA (i.e., a Staph infection). I was briefly moved into a private room (the scene of my breakdown in front of Jane), and then back into a shared room. My next two roommates seemed no better adjusted than the first. One was a middle-aged man who'd suffered a gunshot wound to the side; he was attended at all times by an entourage of attractive young women. He was polite to me, but harangued the nursing staff constantly, and would call up acquaintances of his to demand to know where his money was at, or in one instance, to berate a member of his harem for spending his lucky $5 bill at the cafeteria. After he left, a sullen young man was admitted, who complained of headaches. He said nothing, but merely stared at the walls or anyone else who walked in the door. I was careful to keep the curtain drawn between our bunks - I didn't want to make eye contact with him if I could help it.

The first week continued to be stressful. On Tuesday, I had the first of several Tuesday CT scans of my chest. These scans, performed after ingesting a disgusting iodine milkshake, showed high-contrast images of the injury in my esophagus. For the first time, I could see the gouge I had made. I had hoped that the initial scan would have shown a smaller wound, but I had really done a number on myself. The CT scans would become the most significant event in my weekly schedule: I would be kept comfortable and alive, and each Tuesday, the scan would be repeated. I would be released when the scan revealed a wound that was small and had healed to the satisfaction of Dr. Smith.

My mother remained, and we had the first of several good conversations about my life and what I'd been up to. I had a chance to honestly and openly discuss my sword-swallowing act, and why I'd taken up the hobby at all. It was a great comfort to have her there and to be able to talk, person to person. After she left, I stayed in frequent contact with my family via phone and email, but those first few days of direct contact helped a lot.

Page continued to visit. The stress of the situation began to take its toll on her as well: we squabbled violently over what her role was in this situation, and how she could best help me. I hated to be selfish, but I was; all I knew was that I was lying in bed with a very serious injury, and that I was constantly teetering on the brink of a deadly fever. Eventually, we reached an accord as my routine settled, and she better understood what I needed and that she was entitled to go home and take breaks.

My situation also improved when Dr. Smith approved my request to be switched from morphine to dilaudid, the same miracle drug from the first hospital. The morphine had never done much to dull my pain; instead, it had made me sleepy and incredibly itchy, and had contributed to the bizarre waking dreams. The dilaudid, administered via a constant IV drip and on demand via a 'clicker', produced a huge improvement in the quality of my life.

At the end of the week, a great thing occurred: I was moved permanently to the Thoracic recovery ward on the fourth floor. The new room was practically the penthouse suite; it was nearly as large as my own apartment bedroom, and had a private shower and toilet. Excitingly, there was a large window that faced the landing pad for the airlift helicopters; I could see where I'd been brought in a week prior, and could watch when new patients were brought in. Best of all, it was a private suite. I'd be blissfully alone for the greater part of my stay.


Above: The cot in which I'd spend approximately 23 of 24 hours a day. It's surprisingly comfortable, and adjusts itself automatically and periodically to help avoid cramps and blood clots. The bed had several remote controls which could be used to adjust the elevation of parts or the whole of the bed.


Above: My work area. The little rolling table held my laptop, phone, headphones, tissues, books, DVDs, surgical tape and the remote controls for the radio, television, and the bed. To the right is a reclining chair which Page commandeered during her nightly visits.
In the back, there are three drainage reservoirs, attached to various tubes. The reservoir on the left received fluids that I could suction out of my mouth using the wand. The central reservoir held the contents of my stomach. Fun fact: Everything in your stomach turns yellow or green. The reservoir on the right is unused.


Above: One of the views from my room. The square, light-colored platform in the center of the picture is the helicopter platform which we used during my transport to the hospital.

I left Jane's care when I moved into the new room. Although I missed her fierce concern and around-the-clock vigilance (she never seemed to be off-shift), I was tired of the intensity of the trauma unit. In the new room, I'd be seen by a rotating staff of nurses. By the end of the first week, my condition was stabilizing: the infection was still present, but the fevers had been consistently suppressed. I was regaining strength in my legs, and could stand upright and move around unassisted for minutes at a time.

In many ways, the 'acute' phase of my hospital experience had passed. I had a routine now; scans on Tuesdays, to determine if the wound had healed sufficiently to let me go; established sleeping hours between midnight and 7 AM, only interrupted twice for vitals and pain medications; evening visits from Page, every day; and finally the great interstitial gulfs of boredom, during which I'd have to struggle to pass the hours spent in a single bed, with no end in sight to my ordeal.