Don't judge a meal by it's taste

Did you know that it takes more than just the taste buds on your tongue to actually taste something? I knew that, but didn't realize how true it was until my hospital stay.

While I had the traych, I was unable to breath through my nose. All breathing was done through the breathing tube connected to the traych.

As I said earlier, I was on a fairly strict diet while I was on dialysis, so finding foods that I could stomach was paramount. I found that cranberry juice seemed to fit the bill, along with an egg-substitute that they served for breakfast. This, along with oatmeal with non-dairy creamer instead of milk, became something of a staple for breakfast for quite sometime.

When the time came to cap the traych, allowing me to breath normally, little did I know the culinary surprise in store for me. I quickly discovered, among other things, that: 1. I hate the taste of cranberry juice, 2. Egg substitute is no substitute for honest to goodness eggs, and 3. Non-dairy creamer does not, in fact, taste like milk. I found myself making a number of adjustments to my diet to satisfy my newly acquired sense of taste.

The lesson? It might not taste like a duck if it doesn't also smell like a duck.

Humanizing Technology

During the beginning of my stay at the hospital, I really found myself feeling out of touch with the rest of the world. I'm definitely of a generation that is "plugged in" to information constantly. Whether it is Twitter and Facebook coming in as text messages to the mobile, any number of gadgets that find themselves able to access the Internet in a variety of places, or a trusty laptop in front of me, there is a constant stream of information coming to our minds.

Soon after arriving in the skilled nursing unit, Emily brought my iPod Touch up and all of a sudden I was reconnected to the collective conscious of the world. I once again had access to email that I had been unable to check for over a month, and I was able to start sending out status updates via Facebook. Though it was a slow and arduous process due to the fact that I still had limited control of my hands, I felt that I was once again part of a larger community.

Soon after, I was able to start using my laptop, which became a constant companion, giving me access to information, friends, and entertainment. In a very real way, it helped to keep me sane during those times when there were no family or friends around. I also was able to take advantage of the technology to start creating video blogs detailing my progress and thoughts that I was having that day. It's interesting to go back to those early blogs now 7 months out and remember what was going on in my brain at the time.

Do you dream with wheelchairs?

Something that I have found bizarre during this time are the dreams that I have had. I remember my first dream that I can recall after waking up in the ICU. It was an incredibly fluid dream, and incredibly realistic, although the dream itself was pretty trippy, for lack of a better term. I was floating around this outdoor area, sometime in spring. A soprano was singing a beautiful song that I did not recognize (it may not have been a real song at all). I had this euphoric feeling the entire time.

As my sleep patterns normalized, and after I started using a CPAP machine (I have sleep apnea) I began to have dreams with a recurring theme: walking. It doesn't take Freud to determine the reason for these dreams. My mind was focused on a number of things during my stay at the hospital, but one of the foremost subjects was the idea of walking again. I had a number of dreams where I was in the hospital, and was walking around the floor, talking to the nurses, as if nothing had happened. The first time I had the dream, the nurses in my dream were very surprised to see me up and about so soon. But in subsequent dreams everyone I met seemed to see the walking as normal.

On a subconscious level, my brain always kept the hope of walking again alive, even if my conscious mind wasn't so sure it would happen. In fact, on a number of occasions, after having a particularly difficult day in therapy, I would have one of the walking dreams, as if my subconscious was cheering me along, telling me that it would happen, I just had to hand in there and work on it.

I've only even had one dream this whole time (that I remember) where I was in a wheelchair, and even in that dream, it wasn't long before I was up and walking. I've had a number of dreams where I am using some sort of forearm crutches or a cane, but I am always doing something more that I can now, such as climbing large stairs or running.

My friends and family may be my biggest cheerleaders, but my brain is obviously a close second.

Our Cats

Here is a video that I created of our cats, Hershey and Mocha.

Defying Gravity

This post is coming much later than it should. Wanna know why? Well, I'll tell you.

I was sitting messing about on the Internet last night, and made the decision to write my nightly blog posting. So, I go to start, and notice that it isn't auto-saving. My blog editor is saying that it doesn't have a connection to the blogging server anymore. I try other websites, and find no response. Giving a quick call to Mediacom customer service confirms that there is a service outage in my area and that they are "working to restore service as soon as possible" whatever that means.

Okay, so I decide to wait a bit to see if service comes back. Maybe a good time to pull some of the videos that I have recorded on my Flip camcorder and start editing them together. I flip the USB connector out and try to connect it to my computer. Unfortunately, where I currently have it to access here in the living room is not exactly convenient for connecting the camera. So, I make the decision to get up and go across the room to the USB kit in my IBM bag. I get up, walk across the room with my walker, no problems. I lean down to reach the kit out of the bag, and find it is just out of reach. So, I lean a bit more, and then it happens. I take a header into the walker and collapse on the floor in a pile of Marcus.

First thing's first, I need to extricate myself from the walker. After about 15 minutes of struggling with that, I find myself lying on the floor trying to decide what to do next. Finally, I call for Emily, knowing that I am going to need some sort of help if I am going to get off the floor before morning. Between the two of us, we try to come up with a plan to get my butt off of the floor, but nothing seems quite right. My mom heard us struggling out in the living room and came out to see what the problem was. It was her idea to try and crawl over to my bed and get up that way. I made it over to the bed, and with their help I was able to hoist my upper body onto the bed. Unfortunately, I was still stuck, face down, half way on the bed. Remembering that the bed can be raised and lowered, I instructed Emily to raise the bed as high as it would go, and then after that to raise the foot of the bed higher. Between the two, I was able to get my feet under me and eventually sit at the side of the bed.

3:00 in the morning, and all three of us were wide awake. But I was up on the bed, nursing a few aches and pains from the ordeal. It was something that I had thought about, and knew that might happen at some point, but I had no idea it was going to be that hard to accomplish something as simple as getting off the floor.

Gravity: it's the law.

Time in the ICU

There are a number of things that I remember about my time in the ICU at Mercy Hospital. Since I was unable to roll myself over, the staff used a small (but powerful) sky lift that was attached to a track on the ceiling. They would lower the lift belt down and connect it to a harness that was placed below me in the bed. The belt was then raised, and the staff was able to change the dressings on the wounds that were on the back of my thigh. It was very scary at first, being lifted into the air, especially since I didn't have a lot of control over my body position. I felt like I was being left in mid-air. But the staff did an excellent job of making sure that nothing unfortunate happened.

Physical therapy has been, and continues to be, a large part of my recovery, and it started way back in the ICU. I remember it taking 6 people just to get me seated at the side of the bed. I was not able to hold myself upright without someone helping to prop me up. Doing leg lifts while seated was so difficult. You might as well have asked me to run the mile. There were attempts to find something that would allow me to sit upright while keeping undo weight off of the wounds on my legs. First was a special bed that was supposed to be able to go from lying down to almost upright automatically. Unfortunately, lying on it was something akin to trying to sleep on several boulders. After bringing my original bed back, they tried a chair that was able to recline into a nearly horizontal position. But, this was about as comfortable as sitting on a hay bail for a couple of hours. They then brought in a wheel chair that I was able to sit in. It was the most comfortable of the three options, although that really wasn't saying much. The nurses wanted me to sit in the chair for meals, which was extremely difficult. I was still having a hard time holding my head up, so combining that with attempts to eat with arms that were nearly as useless as those of a T-Rex made of a very frustrating meal. I sat in the chair eating my evening meal during the NFC championship game, and I literally do not remember any of it, I was so uncomfortable and miserable.

Not long after the traych had been put into my throat, the respiratory therapist wanted me to try and use something called a Pasimer valve. This small piece of plastic, when placed on the breathing tube, would allow me to talk. The first time that I used it, the whole process of talking seemed somewhat foreign. I sounded like a cartoon character, and phlegm from my throat would build up behind the valve and leave me in a fit of coughing. I later realized that if I removed the valve, I was able to clear my throat and stop the coughing fit. It was good to be able to do more than just point, jester, and mouth words, but it wasn't easy to get used to.

Pet Therapy

I want to take a brief break from my account of my hospital stay to expound on pet therapy.

While I was staying in the skilled nursing department, about twice a month, a volunteer would come around with a dog on a leash. The dog that was there most of the time was a large labradoodle, which is a cross between a labrador retriever and a poodle. This was a bit of an odd looking dog, but the sweetest animal. Petting him gave me a very calming feeling, and really put a smile on my face, which considering the situation, was quite an accomplishment.

Being in the skilled wing, I was able to have one of our cats come and visit me in the room. We chose Hershey because she is the most outgoing and the least skittish of our two cats. The first visit consisted of Hershey exploring the room and basically ignoring me. But at that time I hadn't seen her in almost three months, so just having her in the room was great. Subsequent visits went better, although she never got totally comfortable with the room.

After one of the visits, the nurse came in and took my blood pressure. It was about 20 points lower than it usually was! This occurred after a subsequent visit, and I had the same result. It was amazing the calming effect that Hershey had on me. Even now, as I continue to recover at home, our cats continue to create an aura of calm around the house... unless they are tearing around playing with each other. Then all you can do is make sure your feet stay clear of the trajectory!

Beginning Anew, Part 2

After the surgery, I was taken to the ICU to recover. I was out for a week, as my family and friends and the doctors all waited to see if I would respond to the antibiotics. Soon, my fever broke. After this I woke up, although I have no memories of the first week. I was basically just responding to different stimuli in the room. I was focusing in the direction of voices in the room. I seemed to respond when they turned the television on and Star Wars was playing.

When I finally became consciously aware of things, I remember being very confused. I didn't know where I was, or what time or date it was. I spent a lot of time drifting in and our of sleep. I remember thinking to myself at one point that I must be at the University of Iowa Hospitals in Iowa City for some reason. My brothers, their wives, and my nephew flew in soon after they learned that I was in the hospital. I do remember them coming in and saying goodbye. Of course, this entire time I've been intubated so I was unable to speak. So all I could do was smile, nod, and point.

It was about this time that I became fully aware of my surroundings. I saw a note that had been left for the staff that I liked the Disney Channel and the SciFi Channel on the television. I looked at the calendar across the room, and came to a startling realization. As far as I had know up to this point, I had been in the hospital for a couple of days. But, when I saw the days marked off on the calendar, I realized that I had been in the hospital for a week!

I also became aware of something that would completely change my view of the world. I was unable to move my legs, and my arms were nearly useless. And on top of that, I could not feel my feet. I don't remember really saying anything about it, but it definitely scared me.

A couple of days after I woke up, the decision was made to remove the breathing tube from my mouth and do a tracheotomy. This is basically a breathing tube in the throat that allows you to breath with the help of a ventilator, but also be able to do things like eating and drinking. This was my first surgery that I was aware of. I was apprehensive, but came through with flying colors.

Soon after I became aware of the world around me, I experienced my first bout with dialysis. During this whole ordeal, my kidneys had shut down, which meant there was nothing to remove the impurities from my blood. The doctors were also using the process to remove excess fluid from my body. In an attempt to bring my blood pressure up to a level that they could at least measure, they pumped my full of fluids. Apparently, I look unbelievably bloated after this process. Needless to say, there was a lot of excess fluid to remove.

During dialysis, your blood is cycled through a machine that basically performs the function of the kidneys. This process is very tiring, and can make you sick to your stomach, especially if they are also pulling massive amounts of fluids off of your body. There are a number of restrictions that go along with this process. They put you on a fluid restriction. You do not realize just how thirsty you can get until you can't have anything to drink. The nurses did a good job of regulating my liquids so that I didn't use everything up early in the day. But there was a lot of eating ice chips in the meantime.

There are also restrictions on the diet. I was not able to eat foods with a lot of potassium or phosphorus. This removed pretty much all dairy from my diet, and for someone who loves milk and cheese, this was a huge deal. So, I had to put non-dairy creamer on my cereal in the morning, and I was unable to have any milk to drink. No grilled cheese sandwiches, no cheese burgers, no pizza. If dialysis did not bring my kidneys back to life, I wasn't sure how I was going to survive with such a limited diet.

More later...

Beginning Anew

Well, here I am, back again. I keep coming back to this blog, wanting something to say, something to share with everyone. I've had many ideas in the past, but nothing seemed right. That was before 2010. This has been a year of change, a year of struggle, and a year of hope. Now, if you will indulge me, I want to share my experiences from the past half year. A year that started with a lovely Christmas celebration, and quickly degraded into a life-or-death struggle with an organism that I had no idea had taken up residence in my body.

January 10th was just like any other Sunday. We returned from celebrating Christmas with my family in Pennsylvania, and headed to bed, looking forward to a Monday off from work. Monday came, and I started to feel as though I had caught a touch of the flu. I remember having dinner with my wife that night. Because my stomach wasn't feeling well, I thought that a nice turkey sandwich from Panera would hit the spot.

Things are a bit fuzzy until bedtime, when I started to shiver uncontrollably. We piled the blankets on as I tried desperately to get warm, but nothing seemed to be working. It was then that I remembered we had a fan with a heating element in the bathroom, so I went into the bathroom and turned the heating fan on. I then asked Emily to get me some hot tea. As I sat getting warm, drinking hot tea and bottled water, it occurred to me that perhaps I was dehydrated, since the symptoms seemed to fit. So I continued to take in fluids like mad, something that, in retrospect, was probably a bad idea. I don't remember a lot after this.

I have vague memories of waking up the next morning, and telling Emily that I had called my boss at work to tell him that I wouldn't be in (although I hadn't). I don't remember the following events, but Emily and my parents have related bits and pieces to me. Apparently, the next few hours consisted of me traveling between the bathroom and the bedroom, all the while telling Emily that I was okay. Emily had since asked her parents (who live here in Dubuque) to come over because she was worried about how I was acting, telling my wife at one point, apparently, that I had a tumor. All I can think of when I hear this is Arnold Schwarzenegger in "Kindergarten Cop" telling the children "it's not a tumor!" As I slipped further into delirium, my father-in-law called my parents (who live about 90 minutes away) and asked them to come down. Soon after they arrived, I was to the point where I was talking incoherently. At that point, my father made the decision to call 911.

Apparently it was quite the scene outside of our house in our quiet little subdivision. For, when you make a 911 call, regardless of the emergency, you will receive the following emergency vehicles: a police cruiser, a fire rescue truck, and an ambulance. I'm a big guy, and I was bigger when this happened, so it took quite a few of the responders to get me on the gurney and out to the ambulance. I have what I can only imagine is a false memory of being dropped before reaching the ambulance. The next memory is being slid into the ambulance. I then have a brief memory of the ambulance garage at Mercy Hospital, as they took me out of the ambulance and rushed me to the emergency room. Jump to one of the examination rooms in the ER, and my memory of trying to get up off of the examination table, telling people that "I have to leave." Emily said that I was very out of it at this point, and not making a lot of sense at all.

At this point, my memories stop. The rest is from accounts from friends and family. I was taken to surgery so that they could determine why my body's systems were failing. The surgeon told my family that I had a 10 percent chance of surviving the surgery, but a 1 percent chance of surviving without the surgery. Quite possibly the hardest thing that my wife had to do at that time was to sign the consent form giving the doctors permission to perform surgery, a surgery that I may not return from. The staff then began to wheel me down to the operating room. As they pulled me into the waiting elevator, one of the wheels took a bad turn and became lodged between the elevator and the main floor. Unfortunately, all of the staff members helping were at that point in the elevator, behind the bed. My father-in-law, in a moment of fast thinking and super-human strength, lifted the bed by himself and got it into the elevator.

I came out of surgery with three deep wounds in my right leg, where the surgeon had removed skin in an attempt to determine what had happened. By this time, the only system in my body that hadn't shut down was my circulatory system, and as it was, my blood pressure was not high enough to register on the equipment. I had a fever somewhere over 105 F. And I was out cold. The doctors basically told my family that all we could do was wait at this point and hope that the fluids and antibiotics would do their job.

To be continued (of course)...