Merry Christmas to All!

I’m taking time out from talking about all of my medical problems to wish everyone a Merry Christmas and to share with them my computer-generated Christmas card.

Click image to enlarge
This card was designed, computer modeled and computer rendered by me.

Created using the Persistence of Vision™ Ray-Tracer POV-Ray™ version 3.6 freeware rendering program which I helped create. For details see

The model contains over 120,000 objects. There are 139 light bulbs each of which contributes illumination to the scene. There are 249 branches consisting of 66,603 needles. There are 62 loops of garland created from 28,816 pieces of tinsel. There are 98 sphere ornaments. The angel and packages were adapted from previous card designs.

It took about 30 hours to design, test render and re-design. The final image was rendered at 1425 x 2325 (300 dpi) resolution. It took 21 hours 57 to render on a 3.2 ghz Pentium 4HT computer running Windows XP Home Edition.

For more information on my images and to purchase posters visit:

©2006 Chris Young, All rights reserved.

Asking the Right Question of a Smooth Operator

This is the first in a series of articles about my recovery from intestinal surgery which resulted in a colostomy. And about a follow-up trip to the hospital to have the colostomy reversed. Although these articles are dated November 2006, I never really did get back to writing these stories around the time they occurred. This blog post and those that follow on this topic were all written in January 2013. Here is an index to all of the articles in this series.

When I left off on this story I was still recovering from my hospital stay in the initial surgery. I did get back to normal use of my arm and my ability to drive. I didn’t have any particular complications with the colostomy or my brace except for the everyday hassles of dealing with the colostomy. Of course it lengthened the amount of time that it took to get me dressed each day.

One of the biggest hassles was the odor while changing my bag. Naturally we did all of that in my bedroom and there is no exhaust fan there like there is in the bathroom. We invested in a large can of Lysol disinfectant air freshener. Sometimes I wondered which stunk worse… The bag of feces or the Lysol spray. Dad also installed a paper towel rack because we used a lot of paper towels and wipes during the process.

One of the parts of the story I didn’t cover very well in the previous installments was the great affection we developed towards my surgeon Dr. Chad Davis. He was just the luck of the draw that he was the surgeon on duty the day that I had my emergency but it was really divine providence. Someone sent me a get well card with Snoopy on the front cover. On the cover it says “What do you call a really cool surgeon?” When you open it up and says “A smooth operator!” He indeed was that. His entire manner just exuded confidence not only in himself but in me. He didn’t say things like “I can do this”. He said things like “I’m confident that you can handle this.” We were so pleased with him that we especially requested that he perform an upcoming lung surgery on my mother. Mom had a spot of lung cancer on one lung and they had decided she needed one lobe removed. Dr. Davis was partners with the surgeons who had previously operated on her pancreas. Despite the fact that that surgery had lots of complications we liked those doctors but they were more specialized in doing surgery with scopes through small incisions. Dr. Davis was a more general thoracic surgeon and we asked if he could do her lung operation. Over the course of about three months he operated on me, then on my mom, and then operated on me again to reverse the colostomy. We joked with him asking if we could get a family group discount since we were sending him so much business.

I could probably have written several blogs about the events surrounding my mother’s surgery but those details are lost to my memory. We will just say here that things went relatively well for her. She did need to be on oxygen almost continuously after that. We also ended up investing in a little three wheel scooter called a “Go Go” that she used whenever she needed to get around long distances such as shopping or at church. She remained cancer free until 2008. I will try to go back and blog some of that experience. She finally succumbed to cancer in February 2009.

The decision to go ahead and have the second surgery and have the colostomy reversed at first seemed like a no-brainer. I certainly didn’t like having a colostomy. No one does. There were some minor considerations in favor of keeping it however. It’s quite a production to get me on the toilet. I try to go either in the morning or the evening as I’m getting in or out of bed. If I have a quick call in the middle of the day he means picking me up at the lift, laying me in bed, almost totally undressing me especially removing my brace. You then lift me with a Hoyer lift into the bathroom. I do my business and you take me back to bed with a Hoyer, and completely redress me including wrestling me into my back brace again. It’s quite a production and we don’t do it unless we absolutely have to. That means on many occasions when the bowels get grumbling I just tough it out until bedtime. The idea that I didn’t have to ever go through that again did have a minor appeal to it. But it wasn’t enough to outweigh the hassle of the colostomy itself.

The other part of the decision was strictly medical. You recall the anguish I went through over whether or not it was safe for me to have general anesthetic for the surgery. In that case it was definitely an emergency situation I didn’t have a choice. This time I was talking about going back into general surgery with a general anesthetic and recovery time similar to previously and it was all technically optional. I made an appointment with Dr. Vorha to get his advice. He asked me if I was invested in the stock market. I thought that was a crazy question. I told him I had owned some stocks in the past but did not now. He said you know when you read information about some company and their stocks they always have that disclaimer that says something like “Past performance is no indication of future outcomes”. Basically it means just because our stock went way up the past few years doesn’t mean it’s going to keep going up. I certainly know that to be a fact. I bought Microsoft and Intel before the technology bubble burst and lost a good amount of money. Anyway he said that just because I had come through the previous surgery okay it was no guarantee that I would be as successful for the second go around. Ultimately it was up to me.

Dr. Swinney was slightly more confident than that regarding my risks but he agreed it was really my call as well.

At this point I’m reminded of the joke about the little boy who came home from school and said that he had a test that day. His mother asks “Were the questions hard?” And the little boy replied “Now they give you the questions… It’s the answers that are hard.” That’s the difference between school and real-life. In school they give you the questions and you’ve got to find the answers. Sometimes in real life figuring out what the question really is becomes the main problem. My experience is that in real life once you ask the right question, the answers are much easier.

After lots of internal deliberation the right question eventually formed in my mind. Do I want to be more normal than I am now? If you recall a previous installment where my former boss Dr. Merritt MD PhD Chairman of the Department of Medical Genetics was curious about “my diagnosis”. My reply to him was that I didn’t know what kind of muscular dystrophy I had. But if he ever could tell me which one he could cure then I would worry about whether or not I had that one.

For over 50 years I had struggled with this disability and none of the doctors could do anything to make me better. The best I had ever hoped for was to keep me from getting worse any faster than I had to. Devices such as the various back braces I’ve worn over the years fall into that category. But none of them could ever do anything to make me more normal. Until now… Ultimately I told Dr. Davis that the reasons I wanted to have the surgery to undo the colostomy was because it was the first time in my life that any doctor could do anything for me to make me more normal. And ultimately that was why I went ahead with the surgery.

In the next installment we discover that having nonemergency surgery is more complicated than you think.

This post actually written January 7, 2013 5:03 PM


This is the last in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

Those of you who know me know the end of this story. You know that I recovered well from my first surgery and I had a follow-up surgery to reverse the colostomy Monday, October 23 at 8 a.m. in St. Vincent Hospital. I was hoping to have this entire series first series before I had the second surgery but I didn’t get around to it. I then planned to tell the entire story of my second surgery but I got so distracted with other things that I haven’t gotten around to it either.

I do intend to go back fill in the details about my recovery from the first surgery, life with the colostomy, and the details of the second surgery etc.

In the next installment I move on to more mundane topics.

Epilogue: Despite what I wrote above, I never did go back to finish this blog. I’m writing this epilogue in January 2013. When I’m going to do is write another blog post or two (okay so maybe three or four who knows) and I’m going to date them various dates in November 2006. In fact there were no blog entries for that month. I only had one brief posting in December showing off my Christmas card. The remaining post in 2007 were mostly about VCRs and remote controls and other technology issues. The Christmas card blog entry is being moved to my graphics blog. The other VCR blogs are being moved to my technology blog.

Home at Last

This is the 15th in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

The next morning Dr. Davis was in very early in pronounced me fit to go home. He told me to call and make an appointment in his office in about a week. Dr. Swinney had also asked me to make a follow-up appointment.

The next question was how to get home. I had only been sitting up in my wheelchair one time and that was not a very good experience. My back brace had not fit properly and I had had overnight pain were the brace rubbed me. I was worried if I sat up in the wheelchair and tried to go home in our van that I would have some problem halfway home and be in real trouble.

We decided it was best if I went by ambulance. The patient liaison in the hospital may be arrangements to get Rural-Metro Ambulance to pick me up. As you’ve seen in previous installments I’m always hopeful I will hit it off with some good-looking female EMT. I ended up with a very friendly male EMT writing in the back with me and a gregarious but married female EMT driving. My mom rode along with us and dad drove the van. The only reason Mom rode along is so she could unlock the door to our house in case the ambulance got there before the van did.

I bid farewell to my friend Cory who had been my caregiver three out of four of the last days I was there as well as other nurses. I was very glad to be out of there but I was already counting the days until I would return to have the colostomy reversed.

The trip was uneventful. As they wheeled the gurney down the hallway of my house towards my bedroom the lady driver noticed all the computers in my office. She gave me her e-mail address and asked me to send her a joke. I warned her that the last time a female EMT asked me to contact her that I ended up dating her. That was when this one told me she was married and her husband frowned upon her dating patients. Oh well… maybe next time.

It was ironic that I rode home in an ambulance because I couldn’t sit up in my wheelchair in the first thing I did when I got home was to try to sit up in the wheelchair. However if I got in trouble I would be able to get back in bed immediately. The brace still didn’t fit properly but it did better than it had in my previous attempt a few days prior in the hospital.

Once sitting up, my arms were extremely stiff and I could barely move my hands. There was no way I could get my right arm into position to drive the wheelchair. Mom pushed me into the living room in front of my HDTV which never looked better. I ate lunch consisting of my usual tuna fish sandwich, potato chips and a Coke in front of the TV. I picked out a program from my DVR that I had previously recorded. I don’t remember exactly what it was that I think it was an IMAX movie converted to HDTV. I just wanted to see something big and spectacular on my 42 inch Sony. It was wonderful!

Then I had Mom push me into the office and position me in front of the computer. I have a homemade boom microphone made out of an old luxo swing arm lamp and a broken apart Plantronics headset. I never realized how critical my positioning in front of the microphone was to be able to use the voice control on my computer. When I’m driving my own wheelchair and I’m not positioned properly I just move the chair a little bit. It must be a subconscious adjustment because when it wasn’t right, I had difficulty telling Mom or Dad how to reposition the chair to get in the right place.

The first thing I did was write an e-mail to several friends telling them I was home and was doing OK. I next sent an e-mail to Father Larry and the rest of the RCIA team telling them that in all likelihood I would not be able to teach my usual lessons starting in September. At that point I was still uncertain if I could wear my brace over the colostomy bag over a long-term basis. I was facing a real possibility that over the next three months I might only be able to be out of bed for a few hours at a time. I also still had no idea why my brace was fitting so poorly and how long it might be (if ever) that I would regain use of my arm to drive my wheelchair again.

Someday I really will lose the remaining use of right arm. They make motorized wheelchairs that work with a mouth control. I’ve been reluctant to look into them because I don’t want to give up using my right arm. However the only other thing I use that arm for is typing on the computer and I’m doing less and less of that all of the time. In fact the weekend I spent the Lake just prior to my emergency trip to the hospital, I forgot to pack the little metal stand that I used to hold my laptop keyboard. I had spent the entire weekend using my laptop with nothing but voice control. I guess I was just trying to convince myself that if my arm never did recover that I would be OK.

After a couple of hours I was getting very tired and lay down again. I had a backlog of movies and TV shows on tape that I could watch in bed. The thing I did most that first day home from the hospital was I peed about a gallon throughout the day. Apparently spending a week on IV fluids had me extremely over hydrated. Later in the day when I got back up again to eat supper my brace fit a little better and my arm was more limber. I was beginning to realize that the overhydration was about 90% of my problem. It was like a brace wouldn’t fit, my arm and fingers didn’t bend and in general everything was out of whack.

I did finally get my right arm propped up into my driving position and I was able to drive my wheelchair a little bit that evening.

Over the next several days I gradually regained some strength but it took a couple of weeks to get back to normal 100%. Once I got rid of all the excess water I actually had the opposite problem in that I had lost weight and the brace was now fitting too loose rather than too tight.

We did some experimenting with trying to put some foam padding around the colostomy to protect it from too much pressure from the back brace but in the end we concluded it was not necessary it actually made me more uncomfortable.

In the next installment I leave you with a cliffhanger…

Rolaids vs. Morphine

This is the 14th in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

Sunday night in the hospital I rested a bit uncomfortably. I had a sharp pain across my shoulder blades and around to the front of my chest. It was in the area where the top of my back brace presses on me. In the front however it almost felt like heartburn because it was high in my chest almost to my throat. I had been having problems with heartburn so it might have been a combination of heartburn and some other pain. They seemed to be willing to give me morphine whenever I needed it I went ahead and took it and that not only calm the pain that helped me sleep. Since it was in an area where my back brace puts a lot of pressure, I concluded that having not worn the back brace for many days and admittedly putting it on in a strange fashion because it seemed not to fit anymore, I decided to take Monday off and not try to sit up again.

Over the weekend my regular doctors were gone and I had been visited by various of their associates whom I didn’t know. Monday it was good to see the familiar faces back on the job again. The surgeon Dr. Davis makes his rounds very early in the morning like 6 a.m. or 7 a.m. He seemed very pleased with my progress. He removed some of the staples from my incision and gave me an almost guarantee that I could go home on Tuesday. I had entered the emergency room and had surgery the previous Tuesday so his prediction of five to seven days was pretty much on target.

Dr. Swinney who is my primary care internist seemed pleased with everything as well. He agreed I was ready to go home and he suggested I make an appointment with him to follow up about a month after I returned home. The lung specialist Dr. Vohra was similarly impressed with my recovery. He didn’t expect to see me until my regular annual checkup with him in July. I reminded him I would be back in a few months to have the colostomy reversed and he would have to supervise my lung issues for that surgery as well. He said OK, just let him know when.

Mom and Dad were in during the early afternoon. They stayed through dinner time and helped me sit up on the edge of the bed hanging in the lift seat to eat my meals. I probably should have tried to put on the brace and sit up again but that pain in my chest the previous night made me very leery of trying that. They were excited about the fact that I was coming home.

While watching TV Monday night the pain around my chest and shoulder blades started to return. I discovered it would subside some if I would have the nurse lowered the bed completely flat. The only disadvantage to lying completely flat was that I couldn’t see television. I tried listening to episodes of “Saved” and “The Closer” on TNT which are summer replacement shows which I had gotten addicted to. It was a little bit weird watching a medical show while in the hospital but fortunately that particular episode didn’t have anything about people whose intestines ruptured or other similar diseases.

In the middle of the night the pain around my chest got worse. I begin to wonder if it was muscle pain of some kind so I tried having the nurse roll me over on my right side. That put me in a much more comfortable position but the pain continued to build slowly. It seemed about every 10 minutes I would change my mind about what was causing the pain. Sometimes I thought it was muscle pain. Sometimes it felt like heartburn. At one point I decided to try some sort of antacid. I asked the nurse what could I have and he said Mylanta liquid. I was already lying on my side and knew I could not drink anything. I ask if I could have something like a chewable Rolaids or Tums. She said they would have to call the doctor to get approval for that. It was 3 a.m. and I asked her did she mean some sort of floor resident on duty or actually call my doctor at 3 a.m. She replied they would have to call my doctor. I said we’re not going to awaken him at this hour for something like that. But I’m going to have to do something because the pain is getting worse. She said “We can give you morphine.”

Somehow I managed not to laugh in her face. I couldn’t believe how ridiculous it was that they could not give me a Rolaids without awakening my doctor in the middle of the night but I can have all of the morphine I want. Naturally I took the morphine! As always it gave me a brief period of nausea but that passed quickly, the pain subsided, and I had no trouble getting to sleep.

In our next installment I describe my return home.

Room Service, Cable and Friends

This is the 13th in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

At some point over the weekend they decided that I could switch from liquid diet to normal food. In previous hospital stays they always give you a little computer print out of the day’s food selections. Typically there is a choice of two main entrées and a variety of side dishes. There are generally a couple of desert selections and the usual variety of drinks. You have to mark your menu in its entirety for the following day. Your first day in the hospital you get potluck. You either get what the guy in the room before you ordered or they just pick something for you.

St. Vincent’s now has a new system that they call “Room Service”. They give you a permanently printed menu with a large variety of breakfast, lunch, and dinner selections that never change. You call them to place your order by phone. If you don’t call within a certain time they call you up and remind you that you haven’t ordered. They also ask you what time you would like your meal although there aren’t very particular about delivering at that exact time but I suppose if you ordered breakfast very early or very late it would probably make a difference.

I was worried that this was some sort of premium service just because I was in a private room and that when things were done with I would get some giant room service bill that my insurance would not cover. However I asked the nurses and they said the entire hospital was like this.

The first night I ordered grilled chicken, steak fries, and a Coke. The chicken and fries were delicious but for some reason the Coke tasted really funny. I couple of years ago after mom had spent a couple of months in intensive care she reported that Coke tasted strange to her afterwards. I couldn’t imagine that just one food would taste different. I could imagine if you’re entire sense of taste was messed up but why just Coke? I still don’t know why… but now I know what she was talking about. It took me a couple of weeks before Coke started tasting properly again.

I tried scrambled eggs for breakfast but they were pretty rubbery so I just had the toast and orange juice. For lunch one day I had a really nice tuna salad sandwich which is what I eat for lunch every day at home. Another evening I tried a hot dog but I’m used to pork hot dogs and this was a very greasy beef hot dog almost like a sausage or something. I didn’t care for it. I gave up on the scrambled eggs and had rice crispies for my final breakfast of my stay.

The fancy room service system isn’t the only amenity they have the hospital these days. A telephone has a jack on the side of it so you can plug a dial-up line to a laptop. The television also has some sort of Internet access built into it as well. You can request a wireless keyboard that lets you do limited Internet browsing and check your e-mail right from your bed. I doubt that I could work this system so I didn’t try it out. Again it wasn’t until my last day that I asked them if that was a premium service or if anyone could do it. They assured me that was part of the standard package.

Speaking of television… they have an extensive lineup of cable channels. Everything you would expect to find in a basic cable system as well as a few other channels that I would probably consider basic on a digital cable system. It included all the major news channels, ESPN 1 and 2, Speed Channel which of course is essential for race fans, and a couple of financial channels which I imagine are in high demand from some people. I was surprised however that Sci-fi Channel was not on the list. There were also some video on demand patient information and health information channels including some videos on how to deal with your new colostomy. I never did get around to watching those. I think they also had some sort of movies on demand but I never did check that out either. I guess the competition for patients among different hospitals is so great that they really have to load on the amenities to keep you coming back. I remember the days when they would charge you extra for telephone and television and all of your soft drinks were charged separately and not paid for my insurance.

Sunday afternoon my family held a high school graduation party for my niece Alaina. She had dropped out of school but attended night school for a couple of semesters before she finally got her diploma. She didn’t want to go through a regular graduation ceremony in June sent she really hadn’t been part of that class. So we scheduled a celebration later which ended up being in August. I was sorry I wasn’t able to go.

That afternoon I did have some other visitors. My friends Rich and Kathy Logan stopped by for a visit. They had just moved into a new house so instead of getting me the get well card, I got a really nice change of address card from them. “Hey… it’s the thought that counts right?” Rich said. I got to tell them all about my adventures the day I went to the emergency room and my goofy communication problems with the nurses in ICU. While they were visiting got a phone call from Judy who was checking up on me. She was out of town for the weekend and couldn’t visit. Rich propped the phone up for me and I talked to her for a few minutes.

In the late afternoon my Uncle Keith, Aunt Barbara, and cousin Nancy came to visit. They had been at the party for Alaina. Nancy is in a wheelchair as well because she was born with spina bifida. She has had a colostomy for many many years. I told her if I had problems or questions she was going to be my “go to” person. At this point my only question was what did she do about odor? The ostomy nurse had given us some drops to put in the bag that were supposed to cut down on odor. Nancy said she takes some sort of pill that helps quite a bit. Given my difficulty in swallowing pills I decided I would stick with the drops for the time being.

Mom and Dad showed up about suppertime and helped me try to eat my hot dog but like I said it didn’t settle very well with me. I wanted to try to sit up in the wheelchair again but after hanging in the lift seat to try to eat supper I was pretty wiped out.

I watched a little television and went to sleep early in the evening.

In the next installment we discover that morphine cures heartburn.

The Language of Caregivers

This is the 12th in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

I’ve always operated on the principle that I don’t need my parents or some other person who is familiar with me to train someone as my caregiver. I’ve prided myself over the fact that by my descriptions alone I can get someone to do for me what I need. Over the years I’ve taken several out-of-town trips where total strangers were my caregivers and I was able to explain to them whatever I needed.

The shift changes at St. Vincent Hospital at 7 a.m. and 7 p.m. so you get two complete new sets of nurses and caregivers every 12 hours. Except for my buddy Cory, I don’t recall ever having the same nurse or caregiver twice in the entire week I was there. That can be frustrating because just when you get one of them trained so that they know how to move you, reposition you, etc. you have to start all over again with a new crew. Perhaps the reason that I liked Cory so much was that I had him three out of the last four days. I didn’t need to go into lengthy descriptions anytime I asked him to do something. He remembered what I needed and how to do it.

However it takes more than good communication skills to get by in these situations. You need to invent a language all your own. I have developed a verbal shorthand of phrases that quickly allow me to communicate with my parents to tell them exactly what I need without going into lengthy descriptions. Phrases like “sleeve tug”, “leg tug”, “strap tug” are shorthand for various common procedures. We’ve even standardized directions to my own coordinate system. Left and right always referred to my left and my right. Up and down a relative to the direction of my head even when I am lying down. So a sentence like “Move my arm up” while I’m laying in bed does not mean raise my arm in the air. It means move it towards the head of the bed (that is “up” relative to me).

When I sleep, I use a variety of pillows in addition to the one under my head. While lying on my back, I have a pillow under my knees. While on my side, the pillow goes between my legs. Nurses and caregivers are generally accustomed to these pillow positions and I have no trouble quickly explaining to them where to put the pillow. However when lying on my side things get a little confusing. With my legs crossed in various directions it’s sometimes difficult to determine my right leg from my left one so I often refer to them as my “top leg” or “bottom leg”. Strangers generally pick up on that terminology easily. Also on my side I have a pillow between my chest and my free arm. I seem to have some trouble explaining to the nurses exactly how to position this pillow. Finally I stumbled onto an idea after two or three failed attempts with one particular caregiver. I said “put my arm around it like I’m hugging a teddy bear”. That did the trick! From that point on that was the first thing I said in describing how I wanted that pillow. After adopting that terminology I’ve never had to tell any of my other nurses anything else to get the pillow in the right position. They always got it right on the first try.

Despite my discouragement over the ruptured ostomy bag I had to move ahead and tried to get up in my wheelchair. Before I did that we tried a couple of experiments where I would set up in the lift seat and just hang there sort of sitting on the edge of the bed. Despite the fact that I wasn’t eating much, when I eat while lying down, I get gas in my stomach and I can’t burp. Raising the head of the bed doesn’t get me upright far enough so the lift was the only way to go. It’s not particularly comfortable hanging in a sling and if I hang there too long my arms start to go numb. On the couple of attempts I had at sitting on the edge of the bed in the lift, I had quite a bit of pain in my belly. Sometimes when I get dangling in the lift at odd angles (and especially if I’m pain) it’s difficult for me to even speak. My head gets all twisted funny or my jaw gets jammed closed as my head flops around.

During those attempts to sit up sometimes the pain was so bad and I would be in such a difficult position I could barely speak. In the past if I was hanging in the lift and discovered something was wrong I would generally say “go back” meaning “we’re giving up… go back to bed… something is wrong.” My mother, God bless her, always tries to fix things and under such circumstances are natural reaction is to ask me what went wrong. When something is wrong I don’t want to have a big discussion with her about the problem. I just want to get the hell out of there and get back in bed! When sitting in the lift seat it’s difficult for me to hold my head upright. You have to push my head forwards, backwards, or sideways to get it balanced just right. Under those circumstances a quickly uttered phrase “go back” could possibly mean I simply want my head tilted back further.

I realized I needed a new shorthand word to deal with this situation. So before we tried putting on my brace and sitting me up I told my parents I had invented a new keyword. If I said the word “abort” it meant “Something is wrong. You need to get me back in bed as quickly as possible. And I don’t have time or the ability to explain what is wrong. And it probably can’t be fixed right now anyway. And we will discuss it after I’m safe in bed and can breathe again without excruciating pain.” With that bit of business out of the way we proceeded to try to get me into my brace and sit me up in the wheelchair.

When Dad tried to put the brace on me it was like someone had put it in a magical machine and shrunk it about two sizes. Normally you have to fasten the Velcro straps on both sides as tight as they will go in order to get me comfortably wedged into the thing. We never even got close to getting them that tight. In fact I had to have Dad loosen them from his first attempt. I couldn’t figure out what the reason was for this disastrous misfit. At the time I assumed that somehow from lying in bed for days my body had gotten out of shape. My spine has two 90 degree bends in it. Perhaps they had gotten further messed up and the brace wouldn’t fit anymore.

We got me into the brace as best we could and forged ahead with putting me in the lift sling. That was uneventful and didn’t cause much pain although it was clearly abnormally uncomfortable with the brace acting strangely. Normally after I’m sitting in the chair would have to scoot my hips back by grabbing me by the pants belt in the back and pulling me up and back. Because the brace was unusually loose, the belt didn’t fit in its usual hole and scooting me back didn’t work very well. I couldn’t sit up very straight because of this. I had to sit in a sort of slumped position.

I expected my arms to be weak but they were even more useless than usual. I tried propping my right elbow upon the control box in its normal position for driving my wheelchair and it didn’t even come close to feeling right. Normally my elbow has very little range of motion and my hand doesn’t grip very well but I could tell my elbow was even more limited than usual and my hand felt swollen and stiff.

The only good thing was that it didn’t feel uncomfortable to have the brace on over the ostomy bag. I only sat up for about a half-hour or 45 minutes so it wasn’t much of a test however as far as it went it was reasonably successful. I went back to bed, got a shot of morphine, and went to sleep.

It wasn’t until I got home a few days later and tried to get up in the chair again that I begin to realize why nothing fit and why my arms were so stiff. We will explore that mystery and many others in the coming installments.

In our next installment we will order room service for solid food and have more visitors.

New Friends and Toxic Spills

This is the 11th in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

It’s now Friday, August 11 after my emergency surgery the previous Tuesday. I was feeling reasonably well with minimal pain. When I did have pain the morphine shots seemed to help. It was time to start thinking about life beyond this hospital stay in the key to that was getting up in my wheelchair.

As explained before, I can’t sit up without my back brace which is basically a plastic body cast that runs for my waist to my armpits. I was wrestling with the difficulties that would pose now that I have a plastic bag glue to the side of my abdomen that would eventually contain all sorts of nasty waste. I really, really did not want to have to cut any holes in the brace to make room for the bag. I spoke to Dr. Davis the surgeon and he seemed to think I can simply wear the brace over the bag.

That morning a nurse who was described as the “ostomy and wound care specialist” stop by for a visit. She was there to train my parents how to change the bag and to give the other general instructions about how to deal with this situation. Mom wasn’t there that morning but Dad was. She demonstrated how to use a small damp wipe with a special solvent that helps loosen the glue. Then she showed him how to clean the skin to prepare it for a new bag.

They have a small piece of cardboard with various size holes cut in it that you use as a measuring gauge on your stoma to see how big a hole to cut in the bag before you stick it on to you. She said that over time as it heals further they can actually shrink some so you need to measure it periodically to make sure you’re still doing it right. You then peel some backing paper off of the bag and stick it to your side. You apply pressure with the palm of your hand and use the heat from your hand to sort of warm up the adhesive so it sticks well. She said leave your hand there a minute or two.

When I discussed with her possibility of wearing the brace over the bag she was much more skeptical that that would work. She was concerned that I might bruise the stoma. I also asked her how often I might have to empty the thing. I’m generally out of bed 10 or 11 hours per day. She was also skeptical that I can go that long without emptying it. It was all pretty discouraging.

Other than the visit from the ostomy nurse. The day was pretty uneventful. I did have the visit from Judy on her way home from work which was very nice. Mom and Dad were in and out and as usual I did a lot of sleeping.

They had me on a all liquid diet which was extremely boring. Jell-O, tea or coffee, broth etc. One of the problems was that it was all stuff that tended to give me heartburn. Sometimes it was so bad I would just throw it up again.

Another milestone I needed to pass was to actually put something in the bag. Since the surgery I hadn’t had any movement all. Friday night was the first time anything went into the bag.

Weekends in the hospital are a different experience because generally the staff levels are lower. There’s not as much activity because no one schedules surgeries or procedures on weekends or unless it is an emergency. I had had pretty good nurses taking care of me. St. Vincent hospital has instituted a color coding system for some of their uniforms. Nurses wear light blue and patient care people (what they used to call orderlies) wear red. Saturday morning I had the unusual luck of the draw to get two male nurses (actually one nurses and one caregiver). Like most male nurses, he had started out in the Armed Forces as some kind of medic and then got his nursing degree after getting out. The caregiver had been working at the hospital a couple of years and had worked in a nursing home prior to that. He was going to school part-time to study nursing as well.

The caregiver guy named Cory kind of became a friend to me over the next couple of days. I think we bonded after a minor disaster occurred Saturday morning. Cory was giving me a bed bath and as he rolled me over on my right side, the ostomy bag flopped over because it was full of liquid. I was the first I’d had anything in there yet. As he’s washing my back I suddenly noticed a nasty smell. When he rolled me back on my back again we discovered what was wrong. The bag completely peeled off of me and spilled its contents down the side of bed and all the floor!

You can imagine how discouraging it was the first time there was ever anything in this bag that the results were a major disaster. Cory couldn’t believe it. Upon further inspection it looked as though the nurse had failed to peel away the protective backing covering the adhesive. I can’t imagine someone who has experienced as the ostomy specialist nurse would’ve messed up like that. There must have been something defective about the bag or there was some other problem. Anyway Cory just went about calmly mopping up the whole mess. He got me cleaned up and applied the new bag. I don’t know what went wrong that day but I’ve never had another “accident” with the thing yet and that was a couple of months ago.

I was fortunate to have Cory has my caregiver for three of my last four days in the hospital. He not only did the usual things like coming in to take vital signs. He was also responsible for feeding meals. That gave us plenty of time to talk and get acquainted. I always joke about hoping to find a good-looking female nurse with whom I could fall in love during the hospital stays. Given that it’s highly unlikely that would happen, I guess the next best thing is to meet a guy who could be in really good buddy to hangout with during meals at who was calm and collected in the middle of a crisis. I felt very like to know him.

In the next installment I invent a new language to instruct my caregivers.

Three Hospital Rooms in One Day

This is the 10th in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

I awoke in the intensive care unit of St. Vincent Hospital on the morning of August 10, 2006 after having had surgery to remove 12 inches of my colon on August 8. I had been weaned off of the ventilator okay and been visited by friends and family. The big event of today was to be to move to a regular room.

Mom and Dad were there in late morning to visit me. It didn’t take long for them to say they have a room for me however it took a long time for them to prepare it. Eventually they said that they were sending me to a double room temporarily and eventually would move me to a private room. Although I don’t mind double rooms and at times I like the idea of having somebody else there, there is very little space in the room and by the time you add my wheelchair and if I try to use my lift to get into the wheelchair there just isn’t enough room to maneuver everything around.

Sometime in mid afternoon they finally transferred me to my temporary double room. Of course when you come to a new room all the nurses have lots of things to do to check you in. They check your vitals and take some history generally even though all that is in your charts. A respiratory therapist was among those working on me in the new room. It was a young man in his late 20s perhaps 30 who at one point said to me “Do you remember me?” I didn’t. He said he had been my respiratory therapist when I first returned from surgery in the ICU. He said there were all these doctors and nurses standing around working on me and he was the one who noticed me mouthing the words “I can’t breathe”. He kept trying to impress upon the other people that I was in distress. He implied he didn’t have much success. He tried making various adjustments to the respirator which had helped some. We had a nice long conversation about the incident. I told him that I’m sure some of my distress was a bit of panic coming out of the anesthetic but that I really was having difficulty breathing. I told him that even after I was fully awake I felt I was not getting sufficient volume through the respirator. He said that increasing the volume was one thing he wasn’t allowed to do. I told him I would have a long conversation with Dr. Vohra about the situation.

I did later have a conversation with Dr. Vohra and he kept insisting that my difficulty in breathing was because they were having to use a small size pediatric nasal intubation tube. It wasn’t however like it was hard for me to breathe which was what you would expect with a small diameter tube. It was more a situation where I tried to breathe deeper and the machine wouldn’t let me. Dr. Vohra said that they estimate my lung capacity based on my weight. The bed in the ICU actually has a built in scale. However anyone who has taken a good look at me realizes that my arms and legs are undersized for the rest of my body. I have very little muscle mass so that although my lung capacity is severely limited, I would think that my lungs are actually large compared to my overall body weight. I don’t think I ever did convince Dr. Vohra that I needed more volume. I even discussed it with him weeks later in an office visit in preparation for my follow-up surgery in late October. I just warned him that if I end up on the ventilator again (which I will at least temporarily) and if I ask for more volume to please give more volume a try. He basically said “Don’t worry about it.”

As it turns out, he is going to be on vacation when I have my surgery and his partner Dr. Pfeiffer who is my mother’s lung specialist will be taking care of me. If I get the opportunity I will be talking volume issues with him as well. Anyway it was an interesting conversation with this respiratory therapist who really seem to know his stuff. Also told him a funny story about the other RT person who didn’t know what a nose pillow was on a CPAP. He explained that day shift people didn’t know as much about different kinds of CPAP’s and masks as did the night shift. Also people in the ICU know more about ventilators and about the equipment the hospital uses and are not as familiar with the equipment people are likely to bring from home. That made sense but it was still a funny story.

My roommate was an African-American man in his late 20s who had been in for gallbladder surgery. Is surgeon was Dr. George who had in the past remove a couple of small cysts from me and who had once removed my Grandma Osterman’s gallbladder. I was only in this double room for a couple of hours until they finally moved me to my private room.

When I was in the ICU, they had me on an inflatable air mattress with a pump that constantly adjusted the pressure. Its purpose was that I would not get bedsores. I asked them for a similar air mattress in the new room but it took them another day to get it and it wasn’t the same kind of air mattress from the ICU. Still it did a pretty good job of keeping me comfortable.

After all the moving around from room to room I was pretty tired. I spent lots of time sleeping.

Up until now I hadn’t had anything to eat and only water to drink. For a couple of days they wanted me on nothing but liquid diet. That meant stuff like broth, tea and some sort of frozen stuff called “lemon ice” which I didn’t dare touch. After having to drink all of that lemon drink garbage before my CAT scan I didn’t care if I never tasted lemons again for a year. I don’t drink tea but they did bring me some coffee upon request. I think there was also some kind of Jell-O. Whenever it was they were giving me didn’t settle very well. I had some nausea problems but part of that I think was from the morphine. I mentioned earlier I never felt any kind of a high from the morphine but when they would first inject it into me I would always get a wave of nausea. That’s not the pleasant experience I would have expected.

The respiratory therapists would come in every four hours or so and give me a breathing treatment. The nurses were in and out as usual but for the most part I was able to get lots of rest. Except for all the moving the day was pretty uneventful which was a blessing.

In the next installment I make new friends who are good in a crisis.

They See Me in the ICU

This is the ninth in a series of articles about my recent trip to the emergency room, my intestinal surgery, and my recovery afterwards. Here is an index to all of the articles in this series.

First a brief apology for the fact that I haven’t posted a new installment in over a month. One of the problems I’ve always had with my writing is I have a tendency to spend more time writing about my life than actually living it. I can spend half a day writing one of these installments. Anyway I’m back at it and here’s the next part of the story…

As we last left our hero, he had just been weaned off of the respirator and was back on his old familiar CPAP machine in St. Vincent Hospital ICU.

Even though I was breathing fairly well, I could tell there was still some congestion in my lungs. From time to time a respiratory therapist would come and give me breathing treatments where I would inhale some sort of mist. I had had this kind of treatment before in the hospital when I had pneumonia. For the first few times they did it, I would put the tube in my mouth and breathe the vapors. However a few days later one of the therapist found a way to hook the nebulizer into my CPAP tube which was much more comfortable. The only problem with that was when I eventually got home I could still smell the vapors in the tubing. We had to give the big hose a thorough cleaning.

I had some nice conversations with a female resident doctor and a male intern who were stationed in the ICU and checked up on me periodically. They were curious about my disability and I told them it was Spinal Muscular Atrophy Type II. The intern had done a rotation in pediatrics and he had heard of SMA. SMA Type I is quite severe and obvious in newborns. Many of them only last a short time (days or weeks) before the weak muscles caused them fatal complications. Since they were in a talkative mood I really laid on the medical speak to impress them with how much I knew about genetics and SMA.

At some point during my stay in the ICU they installed something called an “IV central line”. It’s a large bore intravenous line with three branches on it so they can hook up multiple IV bags and give me injections as necessary. They can also use it to draw blood. Prior to that I just had a small diameter IV stuck in the back of my left hand. They have a choice of putting it in your chest up near your shoulder or in your leg in the groin area. They did mine in the groin. I was really happy to have the better line because the small diameter lines in my hand tend to collapse after a couple of days.

No sooner did they install the line but a nurse comes in and says I have to give you a shot. For some reason it has to go into your muscle area so she couldn’t use the new line. It was some sort of medication to prevent blood clots in your legs. Considering there was a strong possibility I was going to be in bed for a couple of months, I didn’t complain about that kind of shot.

At one point they drew some blood and sent it to the lab. For some reason it showed my blood sugar was way out of line. I don’t recall ever having my blood sugar tested before so I don’t know if mine is usually okay or not. Anyway the end result was they had to give me a shot of insulin which of course had to go into the muscle as well and could not use my fancy new central IV lines. They continued to test my blood sugar several times a day for the next few days by sticking a finger and using a meter. It was well within normal every other time except that first test from the lab. After couple of days I finally talked them out of further testing.

In addition to my Mom and Dad visiting me there, I also had a visit from two priests. Of course yesterday when I really wanted to see a priest none were available. Msgr. Fred Easton is a longtime friend who lives at St. Gabriel’s rectory and spends most of his time working downtown of the archdiocese. He is the Judicial Vicar of the Archdiocese and is in charge of the Marriage Tribunal. He also celebrates Mass at St. Rose in Franklin and at a church in Edinburg Indiana. He had not heard about my illness but once he did find out he came right over to visit. In fact over the seven days I was there he dropped by twice. He told me lots of long stories about his world travels. His next trip would be to Rome in October for the canonization of Blessed Mother Theodore Guerin. Considering there have only been about eight or nine Americans canonized as Saints is a real honor to have someone from Indiana be the next one. She was the founder of the Sisters of Providence convent in St. Mary of the Woods Indiana near Terre Haute. Msgr. Easton had been privileged to prepare some of the documents that were sent to Rome to verify what of the miracles attributed to her that put her over-the-top to become a Saint. I told him a big long story of my own about how important Mother Guerin was to me and how I asked for her intercession in my prayers one time and they were answered bigger and better than I ever expected them to be. It’s a little bit too personal of a story to recount here.

The other priestly visitor I had was my pastor Father Larry Crawford who brought his anointing oils with him and gave me a somewhat belated Anointing of the Sick Sacrament. It was a very good experience for me.

I spent most of the afternoon just lying there relaxing and catching some naps. I spent some time reflecting on the previous 24 hours and how blessed I felt. I also thought back to Judy’s visit and that somehow I had the presence of mind to claim her as family so that she could stay and visit with me. It wouldn’t have surprised me to have done such a thing normally but considering that I was barely conscious at all and on nothing but instinct would be able to lie to get her in was really amazing to me.

At St. Vincent Hospital the shift changes at 7 a.m. and 7 p.m. and so from about 6 p.m. to 8:30 p.m. they ask that no one visits you in the ICU because all the nurses are busy doing reports for the next shift. However at about five minutes till 6 Judy came in to visit on her way home from work. Of course she was elated to see me off of the vent and doing so well.

We talked about the day before and she told me her side of the story. Apparently Anne had gotten my phone message very briefly after I left it and she had called Judy immediately. They had not gotten word to Father Paul because he was away fishing. Judy said she came to the hospital after work and didn’t know where to find me so she just sat in the surgery waiting room which is right off the main lobby of St. Vincent Hospital. Everyone who comes and goes to the main elevators walks right by that room. She figured she would see someone and sure enough my sisters Carol and Karen walked by. They told her where to find me. When she had come in the ICU the nurse had asked her are you family or friend. Judy said she told the nurse “You should let him answer.” And that is when I was frantically mouthing the word “Family! Family!” I told her I couldn’t believe I had done that when I was practically unconscious. That was a pretty cool thing even for me. She agreed. She told me she just stood at the side of the bed and as the doctors and nurses would talk I would briefly open my eyes. When they were quiet I would doze off. At one point the nurse said to her “Okay I threw the mother out so you had long enough.” It was at that point I mouthed “I love you” to her and she went on her way.

I told her the whole story of the previous day and the funny stuff about trying to communicate with the nurses who couldn’t spell “bed flat”. I told her how I had had Mom send out e-mails to people who we wouldn’t be calling. Mom had e-mailed my friend Pamela in West Virginia and my friend Buz in Michigan. Mom had said Buz replied apologetically saying he couldn’t come down to visit me because he was busy with a memorial service for his son Nathan who had just died of cancer a couple of weeks before. I told Judy I really flipped out when I heard that. When I had Mom e-mail him the last thing I wanted to do was having distracted from what he needed to be doing regarding Nathan. Judy and I both talked about how hard it would have for him to lose me as well. Of course losing me as a friend in no way compares to losing a son but losing your son and a close friend in short order would have been even worse.

About 10 minutes after 6 a nurse wandered in and I told her “I know it’s after 6 p.m. and visitors aren’t supposed to be here but I really need to visit with her.” The nurse pulled the curtain in front of the glass doors so no one would see Judy and then she left. Judy and I continued to talk to about 6:30. It really did a lot for me to be able to relive it all with her.

When visiting hours resumed at about 8 p.m. Mom and Dad returned from supper and visited with me awhile. Then they left for the evening. I’ve been fortunate not to have much pain but whenever I had some they would give me a shot of morphine. They must not have been giving me very much. I’ve heard other people in the hospital talk about how wonderful morphine is that I barely noticed any effects. It did of course relieve the pain and it really helped me sleep for two but it wasn’t like I felt like I was getting any big high out of it.

In my next installment I visit three rooms in one afternoon and have a reunion with a respiratory therapist I’d never known I had.