The First Incident

Fifth in a series. Click here for an index of all of the articles in this series.

A Failure to Communicate

When I woke the next morning I was still intubated of course and on a ventilator. My initial reaction when waking up and finding myself in such condition is I often feel like the ventilator is breathing a little bit shallower than I would like. However this time it wasn’t as bad as my previous experiences and I was more ready for it. The first time I woke on a ventilator several years ago I felt like the settings were way too low and I had that “I can’t breathe” situation where that one respiratory therapist was the only one who understood my problem.

St. Vincent nursing staff does 12 hour shifts with a shift change at 7 AM and 7 PM. There was a new nurse in the room so it had to be after the 7 AM change. Also in the room was a young resident named Dr. Heaven although she pronounces it Haven. She’s kind of petite with her hair pulled back in a ponytail and kind of nerdy glasses. She somewhat resembled my maker friend Limor “LadyAda” Fried except the doctor didn’t have pink hair like LadyAda.

Before I had gone on the vent I had asked if they had some sort of message board that I could point to to communicate while on the ventilator. The new nurse had a piece of paper with the alphabet displayed in rows and columns and some other symbols and icons around the edge like daytime, nighttime, pain I forget what else. I had told the previous nurse that I would try to point to the message board with a straw in my mouth. So we attempted to do that.

Note: after I posted this blog earlier today I went through some old paperwork that I brought back with me from the hospital and found this original message board. There are penciled in sections that we added several days later so for purposes of this blog entry assume that the pencil writing wasn’t there. You can click on the image for a larger version.

Dr. Heaven held the paper up in front of my face and I tried to type out some messages. The first thing that I noticed was that it was difficult for me to point accurately because she was holding the paper too far away. I couldn’t get the far end of the straw to actually touch the page so it was really difficult to tell where I was pointing. The whole thing was just a regular 8.5″ x 11″ piece of paper held up landscape orientation. Each square containing a letter was probably at most a square 1 inch. Try pointing at that with a stick at a distance of even two or 3 inches and it’s difficult to precisely tell which letter you are pointing at.

One of the problems with even an accurate way of spelling out messages is that it’s hard for the recipient of the message to connect the letters into words. For example my Uncle Keith is severely hearing impaired and my Aunt Barbara is totally deaf. I learned the finger spelling alphabet at an early age and when I have a little more dexterity with my fingers I could spell words using finger spelling sign language. But I never could read sign language. Even if they spell a word slowly I could recognize each letter but somehow I always perceived it as individual letters in my brain. I couldn’t ever learn to form words. I always thought it gave me a little insight into what might be like to have dyslexia or some other learning disability.

When mom had been in intensive care for 19 days with her pancreas problems and finally was in the St. Elizabeth Seton specialty wing rehabilitating, she would try to use finger spell sign language to talk to me or dad. The only way we could do it is if I would read the letters out loud as she was spelling things and dad would write it down and then we would try to read it back by inserting spaces where we thought they might go.

People were having the same problem understanding me. By the time I pointed to one letter or another they had forgotten what I had already pointed to. They had to write it down as I typed it. I don’t really recall what I tried to type initially. But I was far enough into the process and realizing that I needed the paper to be held closer to me that I decided to forget about whatever else it was I wanted to say and to try to tell them to hold the paper closer.

The very first message that I successfully communicated to Dr. Heaven was “paper closer”. I don’t recall if she wrote it down or the nurse wrote it down or how they managed to get my sequence of letters to reveal those two words but I did successfully communicate those two words. Unfortunately the young resident was clueless as to what I was trying to communicate with those two words. She didn’t understand that I wanted her to hold the paper closer to me so that I could more accurately communicate. As I tried to type out another message… I don’t recall what it was I was trying to say… The way she was holding the paper was slowly drifting further away and making accurate typing even more difficult. If she had understood what I meant by “paper closer” the system might have worked.

At some point after Dr. Heaven left, I tried communicating with one of the nurses with her just pointing at the letters. I had already established with them that wiggling my eyebrows up and down was yes and twitching my mouth left and right was no. Somewhere along the way I also established that making a clicking sound with my tongue who get their attention. And I could use the clicking sound when they pointed to letters on the message board as if I was clicking on it with the mouse. Of course the tongue clicking originated with my late friend Christopher Lee who could not talk because of his severe cerebral palsy. I built the computer for him where he could click into a microphone and use it as a single switch scanning communication system. More on that later.

A Refusal to Communicate

While I could laugh in frustration at my inability to get the resident to understand what “paper closer” meant, there was another communication problem that was not the tiniest bit funny. The new nurse for this first dayshift was extremely impatient with the slowness of my communication.

She was also extremely insistent that she repositioned me as is their usual protocol. I fully understand why they have rules that you should turn the patient every few hours. For the most part it is to protect your skin from bedsores. On the other hand I know my body better than anyone else. Unlike many “quadriplegic” patients, my inability to move does not preclude me from feeling everything. My motor neurons are shot but my sensory nerves are completely intact. I know when I’m feeling pressure and what to do about it. For me if I lie flat on my back without my head elevated even the tiniest bit, all of the pressure equalizes over the widest area of my body arms and legs. If you try to jam a pillow under one side or the other, everything gets imbalanced and it actually creates pressure points. Of course it’s difficult to communicate that using slow typing message board and an inpatient nurse. The best I could do was when they would try to starts a pillow under me I would give them an emphatic “NO” signal.

Her only explanation in refusing to follow my “no” was to say “we have to”.

REALLY?

Timeout for a minute. When I type the word “REALLY?” like that, you need to read it in the same tone of voice used by Seth Meyers and Amy Poehler in their famous SNL sketch titled “Really?” If you’re not familiar with that sketch, stop reading right now and check out this YouTube video for an example. You really need to see this sketch if you’re going to appreciate the rest of this blog.

REALLY?

Do you think you could be more condescending? I recall numerous arguments between my mother and my sisters when they were little kids and they would give mom a very defiant “why?” whenever mom would insist upon something they didn’t want to do. Mom would reply to them “Because I’m the mom and what I say goes”. When this nurse said to me simply “We have to” all I could hear was my mother saying “Because I’m the mom”. Another resident or nurse I’m not sure which also gave me a similar condescending explanation. I only saw this other woman this one time but her explanation of why they had to stuff pillows under me was “We just have to. We wouldn’t be taking good care of you if we didn’t”. Did these people really think I had been in a wheelchair my entire life and didn’t understand skincare issues? I’ve been wrestling with this longer than they’ve been alive.

While I was 99.999% sure that this was totally motivated by my skincare concerns, there was a possibility that they were concerned about my lungs. If that was the case then I would put up with it. I would suffer discomfort and risk pressure points on my skin in order to help my lungs. On the other hand I had been in the ICU less than 24 hours and there was no way my skin was going to start breaking down that quickly. I wanted to stay comfortably flat without being twisted and propped into awkward positions for my own good.

I wanted to ask the nurse if her insistence on repositioning me was based on my skincare or my lungs. I tried to get her to hold up the communication board and she refused! What had been a frustrating situation about my comfort at suddenly turned into a battle of wills in which she could not only enforce her will upon me as if I were a little child, she now had a means to basically enforce a gag order on me by not allowing me to use the only method of communication available to me.

My St. Vincent Call Button

Next this inpatient nurse with whom I’ve been having a battle of wits noticed my special called button in my right hand. She picked it up, stared at it in amazement, and said “WHAT is this?” It is a rather bizarre looking thing. She commented that it had these strange metal prongs sticking out of it that look like they should be plugged into something. She basically ripped it out of my hand and laid aside and went about doing whatever she was doing.

Now not only was she refusing to communicate with me, she removed the only remaining method I had of communicating with anyone else which was to be able to press the call button. So for example if she left the room and I hit the button I might be able to get a more cooperative nurse to come. But now that option was unceremoniously deprived of me. Not to mention if there was something medically wrong with me and I actually needed a nurse I had no way to call.

What I thought was going to be “the last straw” was one final refusal of hers to communicate with me when she said “You need to stop trying to talk”.

REALLY?

There have been times when I tried to talk and I shouldn’t have. At 3 AM the previous night when they were trying to get the intubation tube up my nose and in my throat I was trying to ask what was going wrong and why was it taking so long. They told me don’t talk and that was a legitimate request. But this was in no way medically motivated. She sort of implied that I needed to calm down and shut up because trying to talk with getting me agitated. Talking wasn’t upsetting me… Her refusal to allow me to communicate was what was upsetting me. If she wanted me to calm down maybe she would treat me like an adult human being and listen to what the fuck I was trying to say to her.

I couldn’t do anything but just lay there and be pissed off. I kept thinking about how I’ve always been able to be such an active participant in my own health care. Dozens of nurses have praised me saying how much they enjoy having me for a patient because I can tell them exactly what I need. I can explain to them how to grab me, how to roll me, how to prop up a urinal between my legs so I can pee comfortably. By the way they all have great things to say about my skin. Even this horrible nurse who was so concerned about protecting me from bedsores at one point ended up saying what remarkable skin I have. When she told me what great skin I had I wanted to say to her “Then why the hell won’t you trust me to manage it?”

By the way I’m not in any way discounting the need to protect myself from bedsores. My mother had a really good friend who was a paraplegic that she worked with in various advocacy groups. He had pressure sores that went septic and it killed him and he was probably in his late 40s and otherwise medically stable besides his spinal cord injury. My cousin Nancy struggled with pressure sores on her feet that ended up with her needing amputation of one of her legs below the knee. So I take this stuff seriously. But I understand my own body. I’ve been living with this situation for 61+ years.

I’ve always been able to win these battles because I can communicate. I was laying there stewing over all of this and thinking things like “I’m not some Alzheimer’s or dementia patient or stroke victim who doesn’t know where they are or what they are doing. I’ve got an IQ well above 120 and only missed passing the Mensa exam by 2 percentage points. I know what the fuck I’m talking about. They just can’t talk down to me like this.”

So there I sat with nothing to do but think about “The Questionnaire” that I had been given less than 24 hours prior. It occurred to me that in the situation I was in now, I would actually answer some of those questions very differently.

I need to be 100% clear about what was really going on here. Not in this incident nor in another one I will describe later was I ever physically harmed. Although I was a bit emotionally shaken by the whole thing, I can’t really say that it rose to the level of verbal or emotional abuse. I suppose I would feel differently about it if I was in a permanent situation with a caregiver such as this and had to endure it every day. This was really a battle of wits. A kind of pissing contest in which I was getting both pissed off and pissed on. But there were serious principles at stake. I have the right to refuse any treatment whatsoever. There was no reason to shut off communication with me and in fact that cut off of communication put me at risk. It was clearly the first time in my life where I felt totally helpless and slightly endangered at the hands of a caregiver. It’s exactly the kind of thing the questionnaire was trying to uncover.

At some point they had let me know that they had called my dad that morning to let him know that I had been intubated. I doubt that it came to any surprise because I think we both anticipated it was going to happen. I was more surprised that they didn’t try to do it in the ER or shortly after I arrived in the ICU but as I explained this breathing difficulty would come and go in waves and every time he got bad it would clear up again. So in some respects dad wasn’t going to be surprised to see me on the vent because they had told him in advance.

When dad arrived he talked to this nasty nurse and she gave him a reasonable update about my condition. That I was doing okay on the vent. But at some point she says to him “He shouldn’t be talking right now.”

REALLY?… REALLY?… REAL fucking LY?…

 

 

<sigh>

 

 

R E A L L Y !!!????

My Father walks in the door having recently learned I was intubated. He really has no idea what my medical condition is or isn’t, even though you’ve told him I’m doing relatively well.

And then you tell him that I shouldn’t be talking!

REALLY?

What on God’s green earth would motivate you to say that to my Father? This was the absolute last straw! What the fuck is he supposed to think now? Not only does it conjure up all sorts of medical complications that are nonexistent and probably leave him with 100 questions about why I shouldn’t be talking. Now she’s trying to impede my communication with the only person in the universe who can help me in this particular situation. It’s bad enough that she doesn’t have the time or the patience or the concern to talk to me. Now she’s trying to limit my ability to communicate with a man who loves me most of the world. He is the most absolute patient human being ever created by God Almighty. And he has nothing to do except sit and try to communicate with me. And she’s telling him that I shouldn’t be talking.

REALLY?

Sweetheart you had better hope I die before I regain the ability to talk. Because when I can talk. I’m going to have a fucking encyclopedia worth of things to say about you.

By the way I later asked my dad what he thought when she said I should not be talking. It really was of no concern. It was like… Well he’s got a tube in his throat. He can’t talk. So what’s the big deal? He did not take it to mean there should be no attempt to communicate with me at all. He took it to be literally “talking” which of course I couldn’t do. So my concern that it unnecessarily worried him turned out not to be true. It still doesn’t excuse the situation.

I Get My Chance to Communicate After All

Normally as I write these blogs I try to do them chronologically and I leave cliffhangers for dramatic effect as in the foreshadowing of both “The First Incident” and the fact that there is at least one other. But I’m going to jump to the end of this particular story and tell you how it resolved 2 days later.

This was the morning of Sunday, December 4th but on Tuesday, December 6th I was doing well enough that they removed the intubation tube and I could talk normally. And it so happened that a nursing supervisor stopped by sometime during the day and asked me how things were going. I had a similar supervisor visit during my hospitalization back in May when I had the G-tube placed and I was fighting a UTI. I’m really not a complainer. I don’t get pissed if the nurse doesn’t come within 30 seconds of me pushing the call button. I don’t care if my bath comes late. I’m a very patient patient. But when the supervisor asked me back in May if there was anything wrong way decided to tell her about a problem with respiratory therapist. The RT didn’t want to hook up the humidifier to my CPAP machine. In the end it was a good thing I did complaint. The respiratory therapist was wrong. I should’ve complained to someone the first day. So having that incident under my belt made it very easy to jump right in and tell the supervisor what had happened with the nurse refusing to communicate in treating me in such a condescending way.

Not that I would’ve needed the experience back in May to voice my opinion this time around. I would tell it stranger on the street about this. It reminds me of the joke about the guy who goes in to confession and tells the priest about all of the women that he’s had sex with. The priest says to him “My son you don’t sound like you have any regrets. Why are you confessing?” The guy replies “I’m not Catholic. I’m not here to confess. I’m just telling everybody!” So it’s a little bit disingenuous of me to say that the experience back in May made it easier for me to complain this time around.

So I told the nurse supervisor the whole thing in approximately the same amount of detail that I’ve related here. I made it clear to the woman that I had not been physically nor emotionally harmed. But that I did feel violated. That I did feel disrespected. That I did feel that I had clearly tried to exercise my right to refuse “treatment” and that those wishes had not been met. I told her that I respected their protocols about skincare and could understand why they would be insistent upon them but that I felt I had a legitimate reason to refuse. I gave her the “I’m not an Alzheimer’s or dementia patient I’ve got an IQ of blah blah blah blah” speech.

And then I made it clear to her that while I could possibly get over that disappointment of losing this little battle of wits. That this whole deal “You shouldn’t be talking” was way, way, way out of bounds since there was no medical reason whatsoever for it. And that the worst most unforgivable aspect of the entire incident was to say that to my Father again for no medical reason and at a time within minutes of him walking in the door and not really understanding my condition. That wasn’t a battle of wits or an argument over skincare protocol. That was medical misinformation delivered to my family member who is my designated medical representative.

Because it was two days later a lot of the fury, anger, hatred had faded but the determination to correct the situation of course had not and to some extent still hasn’t. This issue is going to become a crusade for me. This blog isn’t just to exercise my writing muscles and to entertain friends and family. This is a big issue and is going to be one that I continue to pursue as an advocate.

I told the supervisor that things got better later in the day and I may have had her as my daytime nurse the second day without further incident, But because things had gone a little smoother, I told the supervisor that I really didn’t want anyone reprimand or fired or punished. But we certainly have one hell of a teachable moment.

I don’t recall the name of this nurse supervisor but she listened intently. Understood everything I was saying. Agreed with pretty much everything I said that this should not have happened. And she promised me that it would be addressed. I never saw that condescending nurse again.

As I said… I’m jumping ahead a couple of days from the 4th to the 6th. There was another I guess we will call it “non-incident” on the 5th that I discussed with the supervisor on the 6th. I will go back and tell those stories in context later.

Just to reassure readers… “The Second Incident” which occurred on Friday, December 9th and which we will tell you about later, was again more a battle of wits than any physical or emotional abuse. It had some unique elements we will discuss. But after all of the cliffhangers, I just want to let everyone know by except for the 2 incidents, I had magnificent care from everyone both at St. Vincent 86th Street and at St. Vincent Seton Specialty Hospital to which I was later transferred. And that in neither of these incidents was I in any way physically harmed. I was made physically uncomfortable and angered by lack of respect for my wishes and self determination. But I never was really in harms way. And I would tell you if I had been.

I was able to use the communication board to talk to my dad and to the nurses later in the day. I instructed dad to bring my iPhone when he came back the next day. So beginning on December 5th I was able to use my iPhone and my ultimate remote control gadget to type messages to family, nurses and doctors. More on that in the future installments.

To be continued…

Top 10 News Stories in My Life for 2016

In this time of year all the news organizations are recapping the top 10 stories of 2016. I like to take this opportunity to recap the top 10 stories of my life. In any other year items like getting sued in federal district court for copyright infringement would be the number one item but not in this very busy and eventful year. It comes in further down the list. Actually in any other year any of the top four or even five of these stories could have been number one .

So here are the top 10 news stories in my life counting down from 10 to number one.

10. Major new connections on Facebook

From time to time I do Google searches or Facebook searches for long lost friends. 2016 yielded three major finds that I had been seeking for a long time. My old college buddy Frank Williams who is still playing keyboards in bars and nightclubs just like he was when I knew him 40 years ago at IUPUI. We haven’t gotten together in person yet but we’ve exchanged emails and follow each other on Facebook. Ellie Vinci also from my college days was the first girl who wasn’t in a wheelchair that I ever took on a date. Among other things we did back in the day was see Jaws, and go to a hockey game. She taught me an appreciation for violence on ice. My friendship with taught me the value of a strong nonromantic friendship with a female and became the foundation for many other similar relationships throughout my life. And finally Cheryl Fayette, my date for the senior prom and the first girl I ever kissed. Sadly my reconnection with her on Facebook was postmortem.

RIP: My First Kiss

 

9. Release My First Non-CGI Christmas Card

After making Ray Traced CGI Christmas cards using POV-Ray every year since 1995, this year I created a Christmas card that was a photograph of 3D printed statues re-creating a look of my 1995 CGI rendered card. This was a major accomplishment to get the POV-Ray models converted to something that could be 3D printed. It was the culmination of 18 months of work since I first got my 3D printer in the summer of 2015.

My 2016 Christmas Card: Reimagining a CGI image by photographing 3D printed models

 

8. Released IRLib2 Software Library

Several years ago I developed a library of software for Arduino based microcontrollers that sends, receives, and decodes infrared signals such as those used in TV remotes. In 2016 I did a major rewrite to version 2 that took me many months to complete. The new software is much more flexible, expandable, and includes a new 117 page user’s manual. Released as open source for the world to use 100% free. I cannot begin to count the hours I spent on this project in 2015 and 2016.

Announcing the Release of IRLib2

 

7. Built The Ultimate Remote

Somewhat related to item 9 but actually a separate development project I built a new ultimate remote control that not only controls every TV and cable box in the house but uses Bluetooth connection to my new iPhone 6 that allows me to use iOS accessibility switch control features to have full control of the iPhone without using the touchscreen. Both the IR portion and the Bluetooth switch control of the iPhone by using three micro switches that I hold in my right hand. This is the latest in a long series of adaptive technologies I built using Arduino based microcontrollers and represents the most powerful device I’ve ever built in this category. This device was an essential part of my ability to communicate with doctors and nurses during my December 2016 hospital stay.

The Ultimate Remote Control and Why I Built It

 

6. Revolving Door of Home Health Aides

After my friend Rick Ruiz had to quit as my home health aide in November 2015 I’ve spent more than half of the time since then without a home health aide and when I did have them they did not last very long. We’ve had approximately 15 different people. Our longtime agency Acme Home Care could no longer supply a person and we moved to a new agency First Horizon where we are getting much better service. This is been a real strain on dad having to spend so much time taking care of me. However we have recently expanded from six days per week to a full 7 days per week.

 

5. Returned to Teaching RCIA

After teaching RCIA for more than 30 years I had retired because the program had been taken over by St. Michael’s parish. However when the RCIA program returned to St. Gabriel I decided to come out of retirement and teach again. I taught three lessons at the beginning of the year and it was wonderful to return to my most treasured ministry. I’m not sure if I will teach next year but it was good to be back one more time.

 

4. Sued for Copyright Infringement in Federal Court

Was threatened with a lawsuit for the use of a photo of the Indianapolis skyline as the background of my 2013 Christmas Card. Retained a lawyer but negotiations failed and the suit was ultimately filed in June of this year. After spending thousands of dollars in lawyers fees it was finally settled out of court. The details of the case yet to be blogged.

 

3.Stopped Eating and got a G-tube Placed

As my spinal muscular atrophy has progressed my ability to swallow has been severely compromised. I made the decision to stop eating altogether because it was becoming way too difficult. I had a surgical G-tube inserted in my stomach in May of this year. The procedure was supposed to be done outpatient however I was hospitalized for a UTI few days prior to the scheduled procedure so we did it while I was still an inpatient. I still eat occasional soft foods such as ice cream and cake for birthday parties and pumpkin pie for Thanksgiving. I continued to drink Coke and take most of my medications orally although that may be changing soon.

Tough to Swallow

 

2. New Wheelchair Finally Arrives

This April my new reclining power wheelchair with a mouth control joystick finally arrived after a nearly year-long process of evaluating equipment, going through paperwork, having an evaluation from a physical therapist and doctors. Even after the chair arrived we had much difficulty getting me able to operate it and had to build a new joystick mount using my 3D printer. Software glitches and mechanical problems also delayed my initial use of the wheelchair but since then it has operated well and I regained much of the independence I lost in late 2015 when I could no longer drive my old wheelchair.

My New Wheelchair Finally Arrives

 

1. While Hospitalized for Most of December with Tracheostomy Learned of New Treatment for SMA approved by FDA

A simple viral head cold led to a call to 911, an ambulance trip to St. Vincent ER, a tracheostomy and a lengthy wait in Seton Specialty Hospital to get a new in-home ventilator approved. This is the longest continuous hospitalization of my life. The adventure of not being able to communicate while intubated or on the ventilator led to a emotional roller coaster experience that has inspired me to write what may become my next published work after beginning with an extensive blog version. While recuperating in the hospital and waiting on the vent approval learned that the FDA has approved the new drug treatment for Spinal Muscular Atrophy. While primarily aimed at infant Type I patients it has also been approved for use by my Type II children and adults. Although I will not likely benefit from the treatment it is an encouraging sign that others may not have to endure much of what I have lived through for 61 years. The entire hospital experience also illustrated the depth of support and friendship that I have in the maker community which has gone way beyond what I ever expected. This entire month of December could easily be described as the top story of the past decade of my life. The full ramifications of which are not yet known. Extensive blog coverage of these events is still being written.

Pray That They Listen to the Man with No Voice

 

Well that’s it folks. The top 10 news items in the life of Chris Young for 2016. Let’s hope 2017 is a little more calm but just as interesting 🙂

The Intubation Crowd

Fourth in a series.Click here for an index of all of the articles in this series.

I anticipated that I was settled in for the night. They seem to have finished poking and prodding at me and I’ve answered all the questions. The BiPAP was continuing to be a little bit out of phase but I was compensating best I could. However somewhere around 2 AM the “come-and-go” congestion got really worse. I told the nurse I wasn’t doing very well and she could see that for herself. It wasn’t long before I was in yet another of these very serious spells of respiratory distress. We made the decision that I needed to be intubated.

They called for the pulmonary doctor who happened to be one that was familiar to me I guy named Dr. Pfeiffer. He was a partner to my regular pulmonary doctor whose name is Dr. Vohra. Pfeiffer does all of the in-hospital work for that particular partnership. I had had him before as had my mother on many occasions years ago when she was battling lung cancer. He would not remember me or her given the number of patients he sees on a regular basis but I remember him and knew I was in good hands.

It took a while to get everything organized. Residents and interns started showing up. The nurse said to me “You are drawing a crowd”. It reminded me of a running joke I have with my friend Anne Chapman about all of the artistic skills we have based on things we can “draw” such as: I can draw a bath. I can draw a glass of water. I can draw the wrong conclusion. At the time it seemed to me the phrase “I can draw a crowd” might not ever have been on the list that Anne and I had compiled. However prior to writing this blog I dug out the old list and “draw a crowd” was indeed already on it.

Because my mouth doesn’t open very far there’s no way to intubate me using the normal method down throat. I always have to be intubated in my nose. I explained to them that the left nostril was the best one. I told them that occasionally they have used pediatric size tubing. They go in with a scope so that they can see what they’re doing. One of the first times I had to be nasally intubated they just jammed into me blindly and it went really badly. Fortunately the scope method is much smoother. They spray a bunch of medicine in your nose to attempt to numb it. It never does seem to completely numb the pain for example in the way that a shot of Novocain deadens your mouth for dental procedures. Some of it they squirt in and some of it they dab in on the end of a Q-tip. I say it doesn’t work very well but who knows… Maybe it would be much worse if they didn’t do it.

They had some Versed anesthetic available that makes you forget procedures such as this and some other kind of mild anesthetic ready to inject into the IV that have been placed in the back of my right hand. But they didn’t want to give me any of that until they actually had the tube inserted.

While we were waiting for Dr. Pfeiffer to arrive I had a conversation with the nurse and told her that I would raise my eyebrows up and down for yes and wiggle my mouth left to right to indicate no. I can’t really move my head up and down or side to side so that was the best I can do. I asked if they had some sort of chart or paper with the alphabet on it so that we can spell out words. She said that she believed they did have something like that available. Because I can’t point to such a chart with my hand, I suggested that they put a straw in my mouth, hold the chart up in front of me, and I would try to point to it with the straw. I had never actually attempted this but I had been thinking about it many times since the last time I had to be intubated. She said we would try it.

Dr. Pfeiffer finally arrived and began the procedure. He would get the tube just to the point where it felt like it was about to enter my windpipe but he would not put it all away in. I couldn’t figure out what was holding him up. Of course your gag reflex kicks in and the entire process is quite unpleasant. I knew I shouldn’t be talking but at times I tried to ask why isn’t it working? Sometimes I would get really distressed and couldn’t breathe I would try to mouth words like “I can’t breathe”.

I had an amazing sense of déjà vu because there were probably eight people standing around me working on me and some of them were trying to understand what I was saying to them but there it was one young guy standing in the back who was the only one out of the group that can either read my lips on makes sense of what I was trying to mumble at various times. I recall the first time I ever came out of anesthetic from my intestinal surgery and I was on the ventilator I tried to mouth the words “I can’t breathe”. A young male respiratory therapist on that particular day was the only one who understood me. I wonder is this young man was also a respiratory therapist.

In that previous incident years ago, I had the pleasure to talk to that guy later after I had the intubation tube out. I thanked him for being the only one in a group of supposedly more educated people who were standing around me clueless as to what was going on and that he was the one who understood me. Whoever this new young man was I hope to be able to later have a conversation with him and congratulate him for being the only one in the room who was aware of my needs. Spoiler alert… He was a medical student and I did have an opportunity to talk to him a few days later. We developed a great report and friendship throughout my stay in the ICU. We will have more about him later.

Somehow I became aware that the reason they were having such difficulty is that there was a huge mucous plug that he was having to suction out of the way before he could get the intubation tube into my lungs. The combination of that and my somewhat strange anatomy had made the whole process very difficult. Eventually the tube went in and the anesthetic followed and I was out for the night.

To be continued…Not in the next post but in the following post titled “The First Incident

The Questionnaire

Third in a series. Click here for an index of all of the articles in this series.

We come now to “The Questionnaire”. No I’m not talking about the one that James Lipton uses in “Inside the Actors Studio” that he famously credits Bernard Pivot from his French talk shows Apostrophes and Bouillon de culture. This was a questionnaire I’d never heard before.

Alone with the nurse in ICU room 2615 she began to ask me a series of questions that she said were standard questions asked to incoming patients. Although I had been in St. Vincent Hospital a number of times, I don’t recall being asked these particular questions before. I can’t quote exactly each of the questions. There were perhaps 10 of them. At first I thought it was measuring my general emotional state. I thought they were standard psychological questions about how you feel about yourself and your situation. Are you depressed? etc. However that isn’t exactly what they were going for. They wanted to know if I felt safe in my home environment at the hands of family members and caregivers. The questionnaire I was receiving was designed to root out patient abuse.

I could be philosophical and analytical about being asked the question because they were so far outside my experience I didn’t have to stop and think about the answers. I’ve never felt at risk for abuse from anyone. We probably had 20 or 30 home health aides in the nearly 8 years that we been getting help and they’ve all been great people except for one guy who stole over $100 from my wallet. Even though he ripped me off, physically he was a good caregiver. Of course he didn’t want to call any attention to himself so he was going to behave as a perfect gentleman and a good friend to hide the fact that he was a fucking thief.

The one particular question that I do recall was “How are arguments resolved in your home?” I sort of chuckled to let them know I was joking and I said “I always win”. I wanted to reassure them that no one was acting on me against my will. I told Carol later I was being so emphatic about how I was in charge it was more likely they were going to arrest me for abusing dad then do anything to him for abusing me 🙂

I remember thinking it was a shame that they had to ask such questions but it made me feel good for the people who needed to answer those much differently than I did. Who knows it might just save someone from a very difficult situation. At least I hope that it would. Again this was so far beyond my experience that I didn’t know what was like to feel unsafe at the hands of a caregiver.

The huge irony behind all of this was that I’ve been dependent on other people for absolutely everything for over 61 years, would never have answered those questions in a way that would indicate that I had ever felt vulnerable or at risk, and less than 24 hours later had they asked me the same questions I would’ve had to answer differently. In the very room in which those questions were asked, I found myself in a situation where I felt helpless and at the mercy of a caregiver who was ignoring my explicitly stated wishes for no medically necessary reason whatsoever. We will describe what happened in a future blog post titled “The First Incident”.

To be continued in the next post…

 

I was going to end this blog post right here but I can’t resist the temptation to fill out James Lipton’s questionnaire so here goes…

Q. What’s your favorite word?

A. Understand

 

Q. What’s your least favorite word?

A. Hypocrisy

 

Q. What turns you on?

A. There’s this spot on my… No we’re not going there… okay let’s see… “Explaining things”

 

Q. What turns you off?

A. Duplicitousness

 

Q. What sound or noise do you love?

A. The sound of 33 IndyCars or 43 NASCAR Cup Cars going by a fence 20 feet in front of you on an opening lap.

 

Q. What sound or noise do you hate?

A. After a serious accident at the Indianapolis Motor Speedway when you suspect that a driver has been killed in an accident, the PA announcer (either the late Tom Carnegie or the current chief announcer Dave Calabro) comes on and says “Ladies and gentlemen may I have your attention please?” Hundreds of thousands of people go immediately silent knowing what they are about to hear next. The track announcer never asks for their attention in that way unless it is the ultimate bad news. He then goes on to say that he is sorry to report that the driver in a recent incident has succumbed to his injuries. It’s that literally deathly silence after the initial announcement and before he actually delivers the news. That’s the sound or noise that I hate. I’ve been there twice at such times.

 

Q. What profession other than your own would you like to attempt?

A. Although it’s totally beyond my physical capability my fantasy job would be a keyboard player in a rock band similar to Keith Emerson.

 

Q. What profession would you not like to do?

A. At one point before I discovered computing, I thought perhaps I would go to law school but in retrospect I realize it would’ve been a terrible mistake. I could never have a passion for “The Law” that exceeded “doing what’s right” but that’s what lawyers have to do all the time. They have to uphold the law even when it doesn’t always lead to the truth or to justice. I could not do that.

 

Q. Lipton asks “If heaven exists what would you like to hear God say when you arrive at the pearly gates?”

A. First of all my fear is he would say “Chris we have this computer virus we’d like you to take a look at.” But what I hope he says is “Well done.” Either that or “Go back… You’ve still got work to do.”

Q. Note however the original version from Pivot which was feared offensive to American audiences was “”If God exists, what would you like Him to tell you when you’re dead?”

A. I would say “Thanks for everything.”

I’ve Got That One. It’s called SMA Type II. And now it finally matters!

Note: To those of you who have heard this story before, please keep reading to the end. There is a new ending and I don’t want to give it away. Please keep reading.

Approximately 40 years ago I applied for a job as a computer programmer at the Indiana University Department of Medical Genetics which in those days was housed in the research wing of Riley Hospital for Children. My mentor and computer professor Dr. John Gersting was a consultant to the project and helped me secure the job despite his insistence that he would not help and I had to earn it on my own. He attended the job interview which was conducted by the department chairman Dr. Donald Merritt MD, PhD.

To put it mildly, Dr. Merritt was an asshole. Somewhere during the course of the interview Merritt and my mentor Gersting exchange some snarky joke with one another and Merritt flipped the bird at Gersting. Dr. Gersting looked at him as if to say “Why the fuck would you behave in such a childish manner in front of one of my pet students? Are you really so inarticulate that you have to stoop to flipping me off in front of him?” But in fact he said nothing. He didn’t need to.

At one point during the job interview Dr. Merritt asked me “What’s your diagnosis?”

I didn’t understand. I thought he wanted me to diagnose something. He rephrased the question “With what were you diagnosed? What you got? Why are you in the wheelchair?”

“Oh now I understand” I replied. “It’s some kind of muscular dystrophy or genetic neuromuscular disease. As you well know there are a dozen or so different varieties. I’ve never bothered to figure out which one I have. It’s not Duchenne muscular dystrophy obviously. There is genetic history in my family. The people here at Riley described it as ‘amytonia congenita’ but that’s not really a diagnosis it’s more description of my symptoms.” That particular Latin phrase means congenital (since birth) low muscle tone. I always said it was like they took me into the doctors and said “hey this kid has had weak muscles since birth” and the doctor said “We’ve got a name for that… amytonia congenita” and we said “What’s that mean?” and they said “it’s Latin for this kid has had weak muscles since birth”. It sounds so much more formal in Latin it doesn’t it?

“But don’t you want to know?” He inquired.

“Well Doc… When you can tell me which of those dozen or so types of muscular dystrophy you can do anything to help… Then I’ll worry about whether or not I’ve got that one.”

He raised his eyebrows as if to say “okay you got me there.” He went on to explain there were other reasons one might want to know one’s diagnosis. If I have siblings they might want to know if they were at risk to bear children with my disability etc. I told him we would deal with that at the proper time.

He went on to explain very matter of fact that his true purpose was to see if I was comfortable discussing my own disability. He had experienced people who were shy about discussing such issues and considering the way I threw it back in his face I had alleviated any concerns about my shyness or timidity on the topic. The interview went on and I got the job. I worked there for two years until my disability brought on congestive heart failure and other issues that made it no longer possible for me to work a full-time job.

Approximately 25 years later while doing some Google searches about medical conditions for a friend, I decided to look up “amytonia congenita”. Among the websites found were my own blog where I explained my connection to the phrase. Another was a quote from a book jacket on amazon.com for an autobiography titled “The Me in the Mirror” by Connie Panzarino. It said that the author had “Spinal Muscular Atrophy Type II, formerly known as amytonia congenita”. That peaked my interest. Whatever the hell “Spinal Muscular Atrophy Type II” was… It sounded much more like a real diagnosis than a symptom description like amytonia congenita.

I continued searching about Spinal Muscular Atrophy or SMA as it was abbreviated and as I read the descriptions of patients many in their own words, it sounded as though they could’ve been my twins. The course of their disease sounded identical to my own experiences.

One of the things that had made me reluctant to determine what type of muscular dystrophy I had was that the diagnosis process generally involves things like electrical stimulations of muscles and muscle biopsies neither of which sounded very unpleasant simply to answer a question that yielded no useful answers. However SMA was known to be caused by a missing chunk of DNA in my number 5 chromosome. Specifically it is missing from a gene known as the SMN1 gene. Genes are strands of DNA which create specific proteins. They are divided into coded sections called axions and non-coded sections called interons. The seventh axion of the SMN1 is missing in patients with SMA. It’s like you cut the tape and spliced it back together again. All they had to do was take a DNA sample in the form of a blood sample. They would send it off to a lab and sequence that gene and see if than chunk was missing.

Everyone has two copies of each chromosome with one coming from their mother and the other from their father. If you have a missing chunk from one parent but not the other you are a carrier but do not exhibit the disease. If both parents give you DNA with a missing chunk (a 1 out of 4 chance) then you hit the DNA lottery and end up with SMA like me. Whoops… Spoilers… The DNA test came back saying indeed I did have a missing 7 axion from both copies of my 5 chromosome.

Where did I go to get the test done? I went back to the Indiana University Department of Medical Genetics where I had worked as a computer programmer 25 years earlier. Dr. Merritt had died of skin cancer shortly after that job interview. After I left the department it moved to new buildings at the IU Medical Center. But some of the people who were there when I was were still working there and they had a vague recollections of the guy in the wheelchair who worked on the “Mega-dats” computer database all those years ago.

One thing that did not change over those 25 years. There still wasn’t anything they could do for it. But it was fascinating to know they really did know what was wrong with me. In the years since my diagnosis I have followed the course of the research. For example they have developed a strain of lab rats that have the disease which is useful. They’ve come up with a variety of strategies for possibly treating the disease.

I mentioned that the problem is a missing chunk from SMN1 gene which encodes something called the SMN protein the lack of which causes my disease. I can go into more detail on how it works but that’s unimportant for the current discussion. Everyone, whether they have SMA or not also has in their 5 chromosome something called the SMN2 gene sometimes called a backup gene that should kick in if there’s something wrong with SMN1. The problem is everyone’s SMN2 gene has a glitch of its own. Just one base pair in the strand of DNA (I forget whether it’s a AG or a CT that is swapped) is wrong. Think of it as a one bit data error in a strand of data thousands of bits long. That one bit error means that the SMN2 gene only creates the proper protein about 20% of the time. The other 80% create some worthless molecule that does nothing useful.

One of the strategies has been to get SMN2 to turn itself on five times more than usual. That way when it only works 20% of the time you get 5×20% equals 100% of what’s needed. The other strategy is to introduce a drug that increases that percentage so that it works more often. It doesn’t correct the bad bit of data but it causes the protein to get properly manufactured despite the flipped bit. That strategy is one employeed by a drug known as “Spinraza”. But more on that later…

I said that I have SMA Type II. In my particular case I never walked as an infant and the disease has progressed relatively slowly throughout my 61+ years on the planet. A more severe and more common version is SMA Type I in which infants are born severely weakened and rarely survive more than a few months. It is the number one genetic killer of any disease known. There is also an SMA Type III which has a later onset than mine and therefore consequently less severe. The goal of course of most treatment strategies is to try to get those Type I babies to survive more than a few months. A successful treatment is easy to measure because they wouldn’t die. Measuring success in Type II or III is more difficult because the disease progresses more slowly.

Okay… I can’t stand it anymore.

I have buried the lead of the story as deep as I can.

Today, December 23, 2016, the FDA has approved the use of the drug Spinraza for the treatment of Spinal Muscular Atrophy Type I, II and III. In clinical trials with a double-blind study of 121 patients with SMA Type I, results showed that 40% of the patients receiving the drug showed measurable efficacy measured by a variety of standards including extended survival while those receiving a placebo had no benefit. The drug is so effective that all participants are now receiving the actual drug. It is been fast tracked and approved for all types of SMA including mine.

The treatment involves injection into the spinal fluid. I’m not sure how often such injections are required. If you can do it on their program they will cover the cost of the drug. This is also hot off the press there isn’t much information available right now.

Obviously for someone like me who has endured the effects of the disease for 61 years even if this was an all-out cure (and no one is calling it that… They are calling it a treatment) nothing is going to reverse the orthopedic effects of contracted joints, severe scoliosis, muscle deterioration, nerve damage etc. that can come with the course the disease throughout my life. I’ve always known that as I followed the research. To the parents of those Type I babies however it’s the miracle they’ve all been praying for.

But finally Dr. Merritt, wherever you are, they can do something about one of those types of muscular dystrophy. And guess what… It’s the one I got!

And I discovered the news by a Facebook post from CureSMA.org while sitting alone in room 207 of St. Vincent Seton Specialty Hospital two days before Christmas while waiting on bureaucracy to get me a ventilator so I can go home.

Here are two articles with details on the above story.

FDA Approves Spinraza for SMA

FDA approves first drug for spinal muscular atrophy

This Ambulance Sucks… Not!

Second in a series. Click here for an index of all of the articles in this series.

This health crisis began with an ordinary viral head cold. I first noticed it the evening of Thursday, December 1. It was a scratchy feeling in the back of my throat and the soft palate on the right side of my throat. Throughout the night and into the next day I could feel it migrate from one side of my throat to the other and then up into my sinuses. Usually I’m very aggressive in treating any kind of cold because my lungs are easily susceptible to pneumonia. For most people if it’s obviously a virus, doctors recommend you do not use antibiotics because over prescription can be dangerous. But my doctor has always made it clear we need to be aggressive in preventing pneumonia.

In this particular instance I really didn’t think it was necessary. I didn’t feel any congestion in my lungs at all. I had no sign of a fever. It just didn’t seem necessary to treat it at this point. I have some antibiotics that I keep on hand. I keep them handy in case of one of my recurring urinary infections pops up on a weekend when I can’t get to the doctor. I knew that I had that option as well as an immediate care facility in Speedway that I had used on weekends on a couple of other occasions. So I just wasn’t very worried about the whole thing.

Friday afternoon the drainage from my sinuses was getting a little bit excessive and I was also having some unrelated intestinal issues so I decided to go to bed in the middle of the afternoon to take care of my breathing and to be ready to use the bedpan at a moments notice. I wasn’t having any difficulty breathing. I did not put on my CPAP or oxygen until my usual bedtime around 11 PM. But for some reason I just couldn’t sleep Friday night. That happens occasionally and I don’t know why. Sometimes my brain gets to moving so fast I just can’t turn it off at night. I was wide awake until the early hours of the morning so I told my dad to cancel the home health aide who was scheduled to come in at 10 AM. I finally got to sleep around 6 AM and slept until nearly 1 PM Saturday afternoon.

Dad got me up and dressed and I started working on preparing the message for the inside of my Christmas cards. I had already had the outside of the cards printed at VistaPrint.com and I typically print custom inside messages on my laser printer. I also did some tinkering with my 3D printer making some little gifts I planned to give for Christmas.

The drainage from my sinuses started to make me feel a little congested in the throat. Because I use voice control on my computer I decided I needed to stop talking and relax a little bit. I went in the living room and turned on the TV and reclined my wheelchair slightly to help ease my breathing. That usually does the trick whenever I start to feel congested. The reclining wheelchair is new since April. Reclining has always helped in the past but this time it wasn’t working.

Dad was getting ready to cook himself some supper but I interrupted him and said I needed to lay down. Laying flat on my back always helps my breathing. That way I’m not fighting gravity to try to cough up any congestion. I could tell immediately however that this wasn’t helping as much as usual. I put on my CPAP as soon as he got me undressed. I rarely ever do that under such circumstances but I really felt I needed it. It was like my windpipe or bronchial tubes were having some sort of spasms and trying to close up. I was having difficulty getting my lungs to inflate and I was sure that the CPAP would do the trick

The breathing difficulty would come and go in spurts. Sometimes it felt like I was breathing fine. Other times it felt like everything was closing up and spasming. This was definitely an unusual experience. I finally called dad again interrupting his dinner and saying we needed to call 911. I simply could not get my lungs inflated properly.

Firefighter paramedics arrived first and the ambulance shortly thereafter. They picked me up by grabbing the contour sheet off my bed with me wrapped up in it and transferred me to the gurney. They put a mask over my nose and started blowing a high rate of oxygen into me very hard. Much harder than my CPAP pressure. It was still barely enough to keep me breathing well. My oxygenation level was good but I was panting and only breathing with a small portion of my upper lungs.

We headed off to St. Vincent at non-emergency speed which was okay. I was getting by okay and I had the ambulance EMT there if things got worse. Dad would follow in our van and meet me there.

Because of my usual swallowing difficulty I needed to spit the congestion and ordinary saliva from my mouth. I asked the EMT if he had a suction tube and he reached over to the wall and grabbed a Yankauer. He couldn’t get the suction to work. He reached to the other side of the ambulance for another device and it didn’t work either. He said the ambulance was brand-new and they had probably never used the suction devices. Somebody had failed to test them. He had a portable suctioning device that he quickly hooked up and was able to clear my mouth.

There is a ground-level entrance to St. Vincent ER where anyone can drive up and unload but ambulances go down a steep ramp to an underground ambulance bay that is great because it allows you to unload despite the weather. Once inside have to go up elevator to get to the ER.

St. Vincent ER is the only ER I’ve ever been in. They put you in a small enclosed room that looks nothing like the ER facilities you see on TV or movies. On TV it’s always a big open bay with nothing but a curtain between patients or the exam rooms have lots of windows that allow patients to see through to the next bay which allows for all sorts of dramatic TV interactions. I always wondered if other real ERs had that open layout like they do on TV or if that was just to make the stories more interesting or easier to tell. An ER TV show or movie shot in a room like St. Vincent’s ER certainly would not be as interesting. Then again this was not a trauma room so that might be different.

I don’t remember a lot of details of what we did in the ER that night. They put me on a BiPAP machine which is sort of like the CPAP that I use to help me sleep. CPAP provides constant positive air pressure hence the name. A BiPAP is a bilevel CPAP that supposedly senses when you are trying to breathe in and out. He gives you high-pressure on inhale and then lowers the pressure on exhale. For some reason that never works very well for me. I like to let the high-pressure fill my lungs and then squeeze out the air against that pressure so that my lungs deflate slowly. When wearing a BiPAP, the pressure drops quickly and I exhale too quickly. On this particular occasion I was having so much difficulty inhaling it seemed like the BiPAP was not sensing that I was attempting to inhale. That meant it wouldn’t kick in that high-pressure like I needed to do.

Dad had brought my CPAP and the mask that I use at some point, I don’t recall if it was in the ER or he was in the ICU later, but I got them to use my nasal pillow mask rather than the full face mask they had been using. That helped a little bit but not much. As I mentioned before my respiratory distress seemed to come and go in waves. Sometimes I could breathe almost normally. Other times I was in serious distress.

At one point they took a chest x-ray and said that I had no sign of pneumonia. That surprised me considering how much difficulty I was having breathing. But really it did not feel like congestion as much as it did spasms in my windpipe and bronchial tubes. When I would try to inhale I would make a loud rasping sound. It wasn’t until a couple of days later that we discovered I was having some sort of vocal cord dysfunction. My vocal cords were slamming shut and that was restricting my breathing.

I seem to recall being transferred to the ICU sometime around 11 or midnight. Dad had brought not only my CPAP and mask but my special nurse call button that I’ve been using for many years. I’m estimating it was perhaps 30 years ago I was at St. Vincent and could not operate their call button. The biomedical engineer built one for me after I told him the type of microswitch that I could operate. He just told us when you leave the hospital, take it with you and anytime you come back bring it again. We been doing that nearly 30 years now. More on that later.

Because my primary doctor is part of the St. Vincent network and because I been in St. Vincent Hospital on several occasions they already have my medical history and all the necessary information so there wasn’t the usual long patient history to be taken. Dad left and most of the doctors wandered out it was just me and my primary nurse in the room. It was at that point that she told me we went through the questionnaire. A series of questions I had never been asked before.

To be continued not in the next post but in this following one

Pray That They Listen to the Man with No Voice

First is a series. Click here for an index of all of the articles in this series.

On Monday, December 12, 2016 at 3:36 PM I sent some text messages to my friend Judy Chapman asking for prayers in desperation. It was the culmination of 12 days of an emotional roller coaster surrounding one of the most serious health risks I’ve ever had in my 61+ years. It started with an ordinary scratchy throat from a viral head cold on December 1. By dinner time on December 3 we called 911 and I was on my way to St. Vincent Hospital in serious respiratory distress in the back of an ambulance. I made my way from the ER to the ICU where I was intubated at 3 AM that morning. Although I was extubated a couple of days later, I took another turn for the worse and they had to perform a tracheostomy. The inability to talk while intubated and after having had the tracheostomy pushed me to my emotional limits. I’m accustomed to being an active participant in my own healthcare decisions but the inability to talk led me on a bizarre sequence of events that would lead to the text message prayer request that I sent Judy that afternoon.

Because of my disability, I cannot operate an iPhone using the touchscreen. Earlier this year I designed, built, and programmed an electronic gadget that I described as “the ultimate remote control“. It is operated by three small push buttons that I hold in my right hand. The device sends Bluetooth signals to the phone and makes use of the iOS 9 accessibility feature called “switch control”. By pushing three little micro switches, I can operate any of the phone’s functions including sending text messages. Over the past several days this was my primary method of communicating with the doctors and nurses for anything other than simple yes and no questions. I would type messages in the “Notes” app on the iPhone and then the doctors would look at my phone and they would read what I had written. Unfortunately it was a slow and tedious process fraught with difficulty.

I began the text messages to Judy with a joke. I told her that if she had heard a loud whirring noise from the south side of Indianapolis it was my mother spinning in her grave over all of the things that I was enduring. But then it came time to get serious and ask for prayers.

Typing using this device is a bit slow so there’s time to think about each word. I begin with “Pray that…” Okay Chris, be specific, for what do you want her to pray? Healing? Even though I was lying in bed with a tracheostomy and in need of a ventilator to sleep, physically things were going reasonably well under the circumstances. What led me to this emotional meltdown that I was experiencing? What did I really want most in the world at that very moment? Patience? I didn’t want to be patient. I wanted results now. If not healing or patience what did I want? I typed the next two words “…they listen…”.

The message now read “Pray that they listen…” and I was about to type “… to me.” But a sad, sick giggle rose up inside me. “…listen to me?” I had no voice! How the hell do you listen to a man who has no voice? Yet that’s what I really wanted. I wanted a miracle. I wanted people to listen to the man with no voice. So I completed the sentence that way.

“Pray that they listen to the man with no voice.” And I sent it.

And then I read it over and over and over again. The sentence shocked me. It was full of pain and sorrow and desperation. It perfectly expressed the emotions that I was feeling and it revealed them back to me with a clarity that shook me. I’ve written powerful dramatic sentences in my time. I’ve won awards for my writing. This may have been the most powerful sentence I’ve ever written in my life.

I realized that if that was the title of a blog post or perhaps a magazine article or even a book that I would be drawn in immediately. I would want to read that story. What was the story behind those words? Why did the man feel he had no voice and what did he want them to hear that they were not hearing? How did he get to that point in his life that he made that prayer request?

That’s the story I’m going to tell in this series of blog posts. When it’s complete, perhaps I will attempt to get it published. My experiences leading up to that moment, the issues raised in my struggle, and the journey beyond that moment I believe will be a worthwhile tale to tell and I feel compelled to tell it to the widest possible audience.

So let’s go back to the beginning of the story and I will tell you how I got to that moment where I felt that despair and wrote those words.

To be continued in the next post…

RIP: My First Kiss

When Erich Segal wrote his 1970 novel “Love Story” the first line read “What can you say about a twenty-five-year-old who died?” He then proceeded to tell a classic American boy meets girl love story. One could not accuse him of the proverbial “burying the lead” in the story. Nevertheless despite the fact that the book and the movie both began with that sentence, many people were surprised when near the end of the story the girl dies. It’s like people forgot the opening sentence no matter how memorable it might have been. If you ask someone to quote a famous line from that book or movie you will probably get “Love means never having to say you’re sorry.” When Ryan O’Neal who starred in Love Story was fed that line in another movie, his reply was “That’s the stupidest thing I ever heard.” I tend to agree.

Perhaps Sagal was too clever with his opening line. Maybe he should’ve been more blunt. In an attempt to learn from his mistake we begin our tale as follows.

A couple of days ago I found out that the first girl I ever kissed had died in 2013.

The fact that she was the first girl I ever kissed is the only really significant thing about her. I’ve had other girlfriends (some living some now dead) who meant much more to me. But because she holds the distinction of being my first kiss, her story deserves to be chronicled considering that I’ve chronicled so much of my life story in blogs, emails to friends, and even published magazine articles.

I recently have gone on a string of Internet searches for long-lost friends. It’s not the first time I’ve done Facebook and Google searches to reconnect with my past but I seem to have done a lot of it lately. Perhaps it’s because a little over a year ago I passed the milestone age of 60. Perhaps it’s the fact that I made it to 61 and beyond that has caused me to gain more nostalgia for my youth.

In the past few months I’ve had some great success. I reconnected with an old college buddy named Frank Williams who was especially hard to find because Frank Williams is such a common name. Frank was part of a gang of people that hung out with me and my lifetime friends Rich and Kathy Logan. Frank used to play keyboards in a band that would play out local bars and nightclubs. I discovered that 40 years later he still is playing the part of “piano man” singing Billy Joel songs in bars and nightclubs. I finally discovered him on Facebook. He’s the guy who used to occasionally call me Christopher even though my given name is Chris. In retaliation I would call him Frankfurter. I would say if you could put a “… topher” on my name that doesn’t belong I can put a “… furter” on your name that doesn’t belong. It was also appropriate to call him Frankfurter because every day for lunch he would eat two hot dogs split down the middle on white bread piled with so much catsup and mustard there was almost more condiment then there was meat. We have swapped a few Facebook messages and will probably get together again for an in person visit sometime soon. Perhaps I’ll go see him play in a bar somewhere.

From the former girlfriend department I also recently reconnected with Ella Vinci via Facebook. We met in a sociology class in college my third semester at IUPUI and had lunch together every day after class. We went out for dinner and a movie several times. She took me to my first hockey game. She is normally a mild-mannered person however when she is at a hockey game her personality totally changes. She screams and yells at every hard hit “Kill him kill him!” I have often described her as the person who taught me a deep appreciation of violence on ice. She also happens to be the first girl not in a wheelchair that I ever dated. But more than any of those things she taught me that I could have a very enjoyable and rewarding platonic friendship with a woman. She deserves a major multi-part blog to really do her story justice.

Other Google searches for long-lost friends have not fared as well. I still can’t find grade school and junior high friends Teddy Hayes or Greg Whitney. There was a girl I knew at Northwest High School named Melody Richards or perhaps Richardson I forget. Like Frank Williams that name is too common.

Others I found too late. There is evidence that one of my best grade school friends Estel Troxel passed away several years ago as did my buddy Carol Nash. I found obituaries that I’m pretty sure belong to them. Much irony regarding Nash’s passing. Over the years whenever I have run into him various places he has greeted me with the words “Aren’t you dead yet?” He is referring to the fact that all of our friends from grade school and high school who had muscular dystrophy died in their late teens or early 20s. I always took his greeting as a backhanded way of saying “I’m glad you made it this far”. Fortunately for me I have a different kind of genetic neuromuscular disease than any of them had and I made it to 61 and counting.

But let’s get to the story that we really want to tell. Her name was Cheryl Fayette. She was a freshman when I was a senior at IPS #97 James E Roberts School. That was a special school built only for handicapped kids. The story of that school is chronicled in my award-winning magazine article “The Reunion” which you can read here.

The short version of the Roberts School story is that it was attended by me and other disabled kids from kindergarten all the way through high school. The high school consisted of approximately 30 students and that is all for years we’re talking about. Not 30 per year. There were just two teachers and two classrooms. It was the best they could do but the place was really a joke. That’s why I spent my sophomore through senior years attending my regular neighborhood high school Northwest High School part of the day. I went to Roberts School the other half of the day. I could not take all my classes at Northwest because it did not have an elevator in those days.

At Roberts they did their best to give us as “normal” of an experience as they could and to that end we actually had prom at the end of the school year. With only 30 students total we obviously did not have separate junior and senior proms. But to make it a little more special it was open to juniors and seniors only as well as recent alumni and of course their dates.

My junior year I didn’t want to go because I didn’t have a date. And it wasn’t so significant that I didn’t have a date but that I would not be able to get my picture taken dressed up in the tuxedo next to some girl. My friend Rosie, whom I had had a serious crush on since the moment I laid eyes on her in seventh grade, agreed to let me have my picture taken with her even though she wasn’t officially my date. You can read lots more about Rosie in the article “The Reunion” but for our purposes know that if I could’ve attended any event anywhere anytime with the girl of my choice it would’ve been her. When the prom photos came back, somewhere along the way my photos with Rosie got lost. Rosie and I did go out a couple of times early in our senior year but it was strictly just as friends. By the way if you’re wondering, Rosie passed away sometime in the early 1990s.

When senior year rolled around I plan to go stag again to the prom and got Rosie to agree to do retakes of the photos since we apparently broke the camera the first time 🙂 But fate had other plans for me besides Rosie. Cheryl Fayette really wanted to go to the prom but because she was a freshman she needed a Junior or Senior or an alumni to invite her.

Even with a bias of my lifelong crush on Rosie, I must admit that Cheryl was the best looking girl in the school. She was in a wheelchair but I don’t really know if she was spinal cord injury or what her particular disability was. She had a cute smile, long black hairy and a really nice chest. If the rumors were to be believed, that ample bosom had been thoroughly explored one day in the art supply room when she made out with Alan Whitney. It could’ve been just his bragging but the story was well known and she never denied it.

It was probably because she was the best looking girl in the school that guys liked to tease her relentlessly. One day one of the guys grabbed her purse and a bunch of them played keep away with it getting her to chase them around. They eventually hung it out the window of the second story boy’s restroom and invited her to “come and get it”. She went and told the shop teacher Mr. Batt and he went and got it for her. He just looked at the guys like “Seriously this is the best stunt you can pull to get a girls attention?” He did not turn them into the principal but warned them to not count on his generosity for future stunts. I was not directly involved in those shenanigans but I had a ringside seat and enjoyed watching.

At some point Cheryl made it known to everyone that she would welcome an invitation to the problem from me. So it’s really a matter of interpretation as to whether I invited her she invited me. But we have to be honest and say that she definitely made the first move. I eventually did ask her and she said yes but it was more of me saying yes I know you are me to ask you so this is me asking. It was sort of like she was the last girl and I was the last guy available. I don’t know if he ever really had any interest in be personally or not. But it didn’t matter. I ended up with a date with a hot girl for the prom.

I explained to her the whole story about Rosie and the lost pictures from last year. She agreed that I could do a retake photo with Rosie. I made it clear that in all other respects Cheryl was my only date. She went about finding a prom dress and I rented a tuxedo and purchased a corsage. The next issue to resolve was transportation. Of course neither of us could drive a car and even though there may have been wheelchair vans for hire in those days they were hardly like hiring a limousine for a prom date. My mom would drive us in our lift equipped van.

One of my buddies Wayman Glass also wanted to go to the prom and wasn’t going to let the lack of a date stop him. His major problem would be transportation as well. We determined that we could actually get 3 wheelchairs into our van so mom agreed that we could pick up Wayman, go get Cheryl, go to the prom, and take them home again. There would be one other stop along the way. Rosie got her mom to agree to have an after prom party for some people at her house.

The prom itself was really pretty lame. Obviously there wasn’t much dancing going on. The Tech High School swing band provided the music. There were munchies and fancy decorations and of course photos in front of a centerpiece. I don’t recall the official “theme” of the prom but the centerpiece was a giant peace symbol made out of chicken wire and crape paper. I got my photo taken with both Rosie and Cheryl. I still have the photos somewhere but I didn’t bother to dig them out for this blog. I probably should have. Perhaps I resisted because its better I remember it than I actually see it at this point.

When we went to Rosie’s house after the prom, all of the kids sat in the living room and our parents gathered in the dining room and drank wine. Mom agreed with me that the after party was much more fun than the prom itself even though she did not drink maybe more than a glass of wine since she was driving. The only bad part about the party was I didn’t end up sitting next to Cheryl. Somehow we ended up across the room for one another which I had hoped to rectify later but the room was so crowded we ended up that way the rest of the evening. I later apologized to her saying at least I could sit and look at the prettiest girl in the room all evening. Not my smoothest move but it was okay. Seriously though during the prom itself she was sitting next to me and I really couldn’t look at her. It was nice to be looking at this hot girl who was my date.

It turned out I was sitting next to my buddy Wayman at Rosie’s party. It was at that point, he was not an interloper who was going to ruin my date but he became my wingman who was going to facilitate the best part of the evening. I wanted to get a good night kiss but with her sitting across the room there was no chance. Also the three of us about to about to get into my van for the ride home which was no good. I knew that outside Rosie’s house was going to be my last opportunity. Wayman was “the man with the plan” as are all good wingmen. I had told him of my plan to try to kiss her and asked if he would give us a moment alone. He had a better idea. He deliberately left his jacket is Rosie’s living room. Just as my mom was about to load us into the van he said “Mrs. Young I forgot my jacket could you go get it please?” My mom went back in the house. Wayman turned his back. And I asked Cheryl for a good night kiss and she agreed.

As first kisses go… It went really well. It wasn’t too awkward. No tongue but for a first one that’s not unusual. Not too wet nor too dry. It was great. It did not escape me however that I was 17 years old, it was prom night, and I was just getting my first kiss ever. Around the city either that weekend or adjacent weekends, hundreds of guys were getting a laid for the first time as part of a prom night tradition. I like to think of it as me being on the right track but seriously behind schedule.

We dropped Cheryl off at her home and then took Wayman home. By that time it was about 2 AM. Wayman lived in a really rough neighborhood just off of 10th St. west of White River. When mom knocked on his door no one answered for a really long time. She said it was kind of scary being out at 2 AM banging on the door in a rough black neighborhood with nothing but a couple of 17-year-olds in wheelchairs as “protection”. His brother finally woke up and came to the door without incident.

So the entire evening was a fun adventure from my mom as well. Over the years she probably told as many stories about that evening as I did. When word got out among our friends that I had kissed her on prom night Rosie seemed very surprised. It might have been wishful thinking on my part that interpreted as jealousy. I remember looking at Rosie and saying “Don’t look at me that way… You blew your chance that this many times”.

I’m sad to report that Wayman was one of those guys with muscular dystrophy that Carol Nash was always talking about. Wayman Glass passed away at about age 25.

After the prom there was still about two weeks left in school before graduation. It was a difficult time for me as high school graduation always is. I knew I was going to be saying goodbye to friends that I would likely never see again. Again I refer you to my story “the Reunion” for more of the details about me somewhat depressing times all of us were going through at Robert School.

One of the things that I had been going through was the realization that if I was to ever find love in life, it probably was not going to be with another handicapped person. When I had a crush on Rosie at age 12 or 13, I never really thought about what kind of life we could or could not have had together. Although her disability was not so severe that she needed any help in daily living skills, she was just barely capable of taking care of herself. A few years later when her mother passed away she was able to live on her own in her own home or apartment for many years until she later married. On the other hand I need pretty much 24/7 help with everything that I do. And even though I had much more capabilities back then than I do now, she would never have been physically capable enough to do everything that I need someone to do for me on a daily basis.

There was always the possibility that I could hire the attendant to perhaps come in the morning to dress me and to put me to bed at night. Ideally such an attendant would be “live-in” but that would ruin our privacy and naturally strain the relationship. There was the option that I could marry a girl in a wheelchair and we would continue to live with my parents or hers but that also seemed like a really bad option. We later knew of disabled couples who married but lived with parents. Although Rosie’s mom and my folks had always done their best to help us be as independent as possible, other people we knew struggled because their parents continued to treat them like children into adulthood. The one couple married couple we knew who lived with their parents ended up divorcing shortly later. Relationships fail for lots of reasons but I always presumed it was information that the “stay with the parents” solution to my problem was no good. Carol Nash and his wife Mary had a great marriage but they were both capable of taking care of themselves despite their disabilities.

I had come to the conclusion that I would never seek a serious romantic relationship with another handicapped person. Perhaps it was an excuse to help me deal with the realization that I was never going to end up with Rosie. But I really think it was the fact that I was older and more mature and really thinking about my future and not being able to envision it working out with another girl in a wheelchair.

After the prom, Cheryl and I exchanged some love letters and we had a really nice day at the class picnic where we went off for a stroll through Garfield Park by ourselves for a while. No repeat kiss but it was really nice. After graduation we talked by phone couple of times and talked about getting together again but it just didn’t happen. It seemed to me it would been dishonest for me to pursue a relationship with her, knowing up front that it was destined to go nowhere. Keep in mind this was almost 2 years prior to Ella Vinci illustrating up to me that I can have a really fun and fulfilling platonic relationship with a woman. So the end result was I never spoke to Cheryl again. But I think I did see her once…

It was many years later I was at a rock concert at Market Square Arena. I saw a girl in a wheelchair sitting one section over from me. She was really good looking and I thought I should try to go over and talk to her just for the hell of it. In fact after the concert I went past her, made eye contact, smiled but never said anything. As I did so I thought she looked kind of familiar. I was on the elevator headed down to my car in the parking garage of MSA when it suddenly occurred to me why she was so familiar. It was very likely my prom date and first kiss Cheryl Fayette. What an idiot I had been for not realizing it first and saying something to her. I’m not 100% sure it was her but I’m pretty sure.

So what about one in the morning one sleepless night last week I decided to Facebook search and Google search Cheryl Fayette. And I found her on Facebook! Her profile picture was definitely her. She was still a very attractive woman. As is usual when I reconnect with old girlfriends, the first thing I notice is that they have a boyfriend or a husband. There was a guy with her in the photo and I didn’t think it was a brother. In fact I later determined it was not.

Her posts on Facebook were not public and the three photos that were visible all were posted over the course of about 2 months in 2013. I could see her other Facebook friends and found the guy who was in the profile picture with her. His Facebook posts were public but they also ended sometime in 2013. Many of his posts thank God that he was alive yet another day. Some people wrote to him asking “How is Cheryl?” but there was no reply from him. There was nothing in his timeline newer than 2013. I got a familiar suspicious feeling so I turned to Google.

A search for “Cheryl Fayette Indianapolis” on Google produced this as the number one result.

http://www.legacy.com/obituaries/indystar/obituary.aspx?n=cheryl-a-fayette&pid=166294873

It is an Indianapolis Star obituary published August 7, 2013 saying that Cheryl A. Fayette 55, Indianapolis, died Aug. 3, 2013. It told the time of the visitation and services but gave no other information. In 2013 I was 58. If Cheryl was a freshman when I was a senior that would put three years between us so the age was right. It had to be her given the abrupt cutoff of her Facebook information at the same time.

After I found out she had died I told my dad “I found out the first girl I ever kissed died in 2013”. To try to lighten the moment he said “You killed her”. I laughed and said “It must’ve been a slow and painful death. It took over 40 years.” We both just laughed.

Anyway, I really don’t know who the guy was in her photo but it’s obvious from looking at it that he was someone special to her and vice versa. I’m happy for her on that account that she had love in her life even if her last name did not change which I presume means she did not marry. It was similar to the relief knowing that Rosie had eventually got married and had a child even though she died at an early age as she knew she would.

But somehow I can’t help but feeling that I missed an opportunity for a lifelong friendship. Had I known what Ella and Joyce and Judy and others have taught me over the years about the rewards of platonic friendship I might not have dismissed so quickly a continuing relationship with Cheryl.

I really should have googled her much sooner.

Farewell Food

Before I stnotes forart on this blog installment, I’m going to try something a little bit new. Every time you see this little Facebook logo, you can click on it to see a post that I put on Facebook as these events were occurring. Now on with our regularly scheduled story…

When I left off in a previous entry on May 2, I had told the story of my decades long problems with swallowing, I said that I was going to call the doctor for an appointment to talk about the possibility of getting a G-tube. In this lengthy blog post I will talk about what I went through to get the G-tube and the complication of having a urinary infection that sent me to the hospital in the middle of all this.

I did call on my doctor that day and made an appointment for Thursday, May 12 with my primary care physician Dr. Jeffrey Kyrouac.

 

G-tubes and Breathless and Lawsuits… Oh My

I mentioned that it was a very stressful time for me with my new wheelchair, new caregivers coming and going every few weeks, and the stress of not being able to eat very well. That stress all multiplied on Wednesday, May 4 when I got an email from a photographer threatening to sue me for copyright violation. I had used a photo of the Indianapolis skyline at night as the background for my 2013 computer-generated ray-traced Christmas card. The short version of the story is that both I and my lawyer tried to negotiate a settlement and it went nowhere. The guy eventually filed suit in federal court and as I write this blog post in late June we are about to file our response. My lawyer since I have a good chance of a “fair use” defense. When the complete case is over with I will blog about it extensively but for now it’s best if I don’t discuss the case. I just mentioned here to give you an idea of the added stress that I’ve been having.

I went to the doctor on the 12th expecting to discuss with him what my options were short of actually getting the G-tube. His attitude was that I had been using all my options for the past 20 years and now there was only one option and that was to get a G-tube. The really wasn’t any debate about it. It was a tiny bit of a wake-up call for me. His attitude was like “Hell yes you need a G-tube” and I suddenly realized “Hell yes I DO need a G-tube. What was I thinking?” So he referred me to a gastroenterologist.

The next day was Friday the 13th and in some ways it was a bad luck day. Part of my morning routine is after getting a bed bath we occasionally hook me up in the Hoyer lift and sit me on the toilet. I hang in the sling for a few minutes and when I’ve done my business I call for dad or my home health aide to get me. But for some reason on this particular day I was hanging in an awkward position and I couldn’t get enough breath to call them. Sometimes it can take as long as 10 minutes for me to finish so dad wasn’t concerned. The new caregiver had no experience to know how long I might be. Finally after about 15 minutes she came to check on me and I whispered “Get my dad”. When he got there I whispered “I can’t breathe”. He rushed me back to bed and I was okay after that. It wasn’t that I really could not breathe. I wasn’t at risk of passing out. But I could only take rapid shallow breaths.

I’ve heard that when someone is crucified they die of asphyxiation. Hanging with your arms up in the air like that makes it difficult or impossible to breathe. After this experience I have no doubt that this is possible. Like I said, I wasn’t in any real danger. However it was extremely scary and frustrating to be in such a helpless situation. The new protocol for me sitting on the toilet is that dad or my caregiver checks on me every five minutes.

The rest of the day went really well. I went to see the new “Captain America: Civil War” movie with my friends Rich and Kathy. It was the first time they had taken me anywhere in my new wheelchair and my new van. That all went really well. Of course it was a little awkward not having done it before but it all went okay. I thought it was one of the best comic book action movies I’ve ever seen.

 

The Date is Set

On Tuesday, May 17 I had my appointment with the gastroenterologist. After the initial shock that we really were going to do the G-tube, in the days leading up to this appointment found a sense of relief. It had been so difficult for me to eat that the idea that I wasn’t going to have to struggle to do so anymore had somehow overridden any worries or dread that I had about the procedure itself. It seemed strange to be looking forward to a surgical procedure which I had been avoiding for almost 20 years.

I have never been to this doctor before. His name is Dr. Mazen Alsatie. He’s a very likable guy who tended to joke around a lot which puts you at ease. I had had another gastroenterologist one time I referred to as “my asshole doctor” not because of his specialty but because of his terrible bedside manner. I was glad that this new doctor was much nicer.

I explained to him the difficulty that we could probably not get an endoscope down my throat. The normal procedure for putting in such a G-tube is a put a scope down your throat into your stomach and then that guides them were to poke a hole that your abdomen and into the stomach. Also expressed my concerns about general anesthetic which can be dangerous for me. He said he needed to talk to another doctor about my case and he would be right back “If I’m not back in a few hours, check with the nurse… Just kidding. I will be back in a minute.” Like I said he is a jokester.

He did return in just a few minutes. The plan that he came up with was to have a radiologist do the procedure outpatient at St. Vincent. I would have to drink some barium the night before. He even suggested I might go to the hospital the night before and they would give me the barium using a nasogastric tube. This is a tube that they stick up your nose and then down into your throat and into your stomach. It can be used temporarily for feeding or anything else they need to put in your stomach like barium for a procedure. We got a call the next day from the radiology department at St. Vincent and I set up my appointment for 10:30 AM on Thursday, May 26 which was just a little over a week away. We concluded that I could drink the barium normally so I would not need to go into the hospital the day before. At least that was the plan at that point. Things would soon change.

I spent the next several days trying to negotiate the copyright lawsuit unsuccessfully. Let me rephrase that… I wasn’t trying to negotiate unsuccessfully. I was trying to negotiate… However I was unsuccessful. On Friday, May 20 I got a visit from my friend and former caregiver Rick Ruiz. He had not seen my new wheelchair and it was fun to get caught up with him. While he was here that afternoon I started noticing some pain in my bladder. After he left I tried calling my urologist and ended up leaving a message on the nurse’s voicemail. It was about 3:30 or 4 o’clock so I wasn’t very hopeful that I would hear back from them.

The next morning when I had not heard anything, I decided I should go to the immediate care center over in Speedway to see if they could get me an antibiotic. It’s a nice little facility at the end of Main Street. It’s normally very easy to get to however this happened to be opening day of qualifying for the 500. We decided to go a little bit of the back way and went on the highway to 10th Street and then back to Speedway. As it turned out there wasn’t any traffic there but it was still a good idea to long way around. We got in quickly and I met with a nurse practitioner and explained that I had recurring infections. I had brought a sample for them to test and it looked very nasty. I told her that my urologist usually gives me Levaquin 500 mg. It made her job easy because I knew exactly what was wrong and what I needed to fix it. I told her it reminded me of the time my mother took my sister Carol to the doctor when she was about five or six years old. Carol said “Mommy why do we have to go to the doctor if you already know what’s wrong with me.” My mom said “They won’t let me write prescriptions.” Mouse up

The next day on Sunday I felt worse. I had a rough night Saturday night and slept in till afternoon. I just sat around and watched the second day of qualifying for the 500 on TV. I began to get concerned because I had not been eating well that this infection was getting me harder than usual. I told dad early Monday morning that I thought maybe we need to go to the hospital sometime that day. The problem was that dad had been suffering with a nasty case of shingles for several weeks. He had finally gotten a doctor’s appointment for Monday and I hated to see him miss it. I told him he should go ahead and keep his doctor’s appointment and then we would go to the hospital afterwards. Meanwhile that morning the urology nurse finally returned our call. Dad told her I was doing worse and was thinking about going to the hospital. She said since I was getting worse that was probably a good idea.

Monday, May 23 I rode with dad to his doctor’s appointment and then we went on to St. Vincent. We got to the hospital about 3 PM. I gave them a urine sample and they drew blood and hooked up an IV. Of course you spend forever waiting on things in the ER. I managed to connect to St. Vincent’s free Wi-Fi while waiting in the ER. You could not get a cell signal but at least you could get Wi-Fi. I posted a quick message on Facebook. It was several hours until we knew what was going on. They concluded that the infection had not gone systemic. That was one of my main concerns. Because I had not been eating very well I didn’t know what was going to happen with this infection. They decided it was best to admit me which is what I really wanted at that point. It was after 9 PM when they finally got me to a room.

We had a little bit of a logistics problem getting me to the room from the ER. When dad goes somewhere where he has to walk long distances, he needs to take our little three wheeled gogo scooter that we bought for mom years ago. So we had me on a gurney, dad in the gogo scooter, and my empty wheelchair all needing to go from the ER to the fifth floor. The nurse requested 2 people from transport to assist with moving my wheelchair. But somehow the message got mangled. They sent one guy to push the gurney and then another guy came along with an empty push wheelchair. When he saw the first guy taking me on the gurney he thought they didn’t need him.

I wasn’t really anxious to have the wheelchair itself. I would not need it for many days. But sitting in the wheelchair was the bag containing my CPAP machine and also my special call button. For those of you who have read stories of some of my previous hospital visits, you know that I have a little push button on the end of a wire was made for me by the rehab engineering people at St. Vincent perhaps 30 years ago. I just take it with me anytime I need to go to the hospital. It plugs into their call system and it has a really light touch that I can use. Dad didn’t want to leave until I had the call system set up and was all settled in. Eventually the nurse from the ER who had been taking care of me brought the wheelchair up herself. I guess if you want something done right you do have to do it yourself.

We plugged in the call button and set up my CPAP machine. Dad didn’t get to leave until about 9:30 or 10 PM.

 

Too Many Damn Rules

Dad and I have a running joke whose punchline is “There are too many damn rules”. It usually comes up when we are watching a football game and the referee calls some really obscure penalty. Dad always says “There are too many damn rules.” He wants to just let them play the damn game. We quote that line and are so many other circumstances that it has got to be a cliché. Who knew that I would run into it at the hospital that night.

When you use a CPAP machine that you bring from home, it is supposed to be checked out and set up by someone from respiratory therapy. The therapist had stopped by just minutes after I arrived in my room. At that point the CPAP was still with the wheelchair down at the ER department. When the wheelchair finally arrived, the RN who was assigned to me went ahead and set up the CPAP and put it on me.

I explained to him that I needed a humidifier in the oxygen line. The way it works is that there is a receptacle in the wall that feeds out oxygen. You put a little container full of water in that line and the oxygen bubbles through the water to human it. The oxygen line then plugs into the hose on the CPAP to provide humidified oxygen in addition to the pressurized room air that the CPAP provides. That’s the way I’ve done it for years at home. When I first started on CPAP 30 years ago, the humidifiers that you would use with a CPAP were not very reliable. You could not control the amount of humidity. Even though newer CPAP machines have sophisticated temperature and humidity controls, when I replaced my machine several years ago they offered me a heater/humidifier but I didn’t think I needed it. My nurse, a really nice guy named Pete, had no problem hooking up the bubbler in the oxygen line connecting everything like I wanted.

Then about midnight the gal from respiratory therapy returned and looked at the CPAP set up. She said we could not have the bubbler in the oxygen line. She said that there was a risk that the back pressure from the CPAP could cause the bubbler to explode. She wasn’t just talking about it springing a leak and squirting water. She said something to the effect of “we don’t want anyone getting hurt” as if it was going to shower the room with shrapnel. The whole idea was totally ridiculous. Yet she insisted that it was a firm “hospital policy” with no room for negotiation. So she removed the bubbler and connected the oxygen line directly into the CPAP with no humidification. I figured I would be okay. Sometimes my humidifier at home dries out and I don’t notice it for a day or two.

My decision to go ahead and use the oxygen without the humidifier would come back to haunt me later. The respiratory therapist I had for the second night came up with another silly rule. I had to have an oxygen meter connected to my finger anytime I had my CPAP on. She wrapped it around my finger so tight that it made my finger throb. I eventually got the nurse to loosen it up to where it was comfortable. The irony is if I have on my oxygen and my CPAP my oxygen level is always usually in the high 90s. It’s more likely that I would need the oxygen meter when the CPAP was off but they don’t care about that. The rule is you only need it when your oxygen is on. Fortunately I only had to do that one night. None of the other respiratory people seem to care about it the rest of the week.

There are too many damn rules.

 

Staying Connected

I had a reasonably comfortable night in the hospital the first night. The following morning, dad had an appointment of his own. In addition to his problems with shingles, the also was concerned he was having some gallbladder problems. The doctor scheduled him for an ultrasound on the morning of Tuesday, May 24. He had that procedure and then came to the hospital to visit me. He brought my laptop and I was able to get online. It also gave me the opportunity to catch up on some TV shows that I had downloaded and some YouTube videos I wanted to watch. And of course it gave me the opportunity to keep in touch with everyone by Facebook.

Not only does my laptop give me access to the Internet and anything that I might have stored on the laptop, I can use Team Viewer remote access software to log into my desktop at home and get access to anything on that machine. While most people use some sort of webmail to access their email, I’m kind of old-fashioned and I use Microsoft Outlook and a POP3 access to download all of my email to my desktop machine. The disadvantage is that if Outlook is running on my PC and captures the email, there’s no way to access it from a webpage. I had deliberately left my desktop running but forgot to mention to my dad that it was intentional. He had shut it down when he got home. While that meant I could not access my desktop computer, it also meant that Outlook wasn’t running so if I accessed webmail then unread emails would still be there. I was anxious to see if there was email from my lawyer. The guy who was suing me for copyright infringement had said that he was going to file the lawsuit either Monday the 23rd or Tuesday the 24th depending on which threatening email you believed. I was able to contact my lawyer by webmail and tell him I was in the hospital. He said that my opponent had filed several lawsuits on Monday but mine was not among them. It turned out that he did not file the suit until a couple of weeks later.

 

Input and Output

You see a number of doctors over the course of the day. There is generally an intern or resident who is directly assigned to you. He or she then reports to the chief resident and in turn they both report to an attending physician. They all confirmed that I was doing well. The infection had not spread and they seem confident that while I was still in the hospital we could proceed with the G-tube procedure perhaps as soon as Wednesday the 25th.

I was concerned that I wasn’t urinating very much however they said that my blood work indicated that my kidneys were functioning okay. With the IV constantly running I expected to be putting out more fluid from the other end. I don’t know where it was going but we were certainly putting in more than was coming out.

At one point they sent in a nice young woman who was from the speech therapy department. Her actual goal however was to investigate how well I could swallow. I gave her my complete history of swallowing. She had me tried to swallow ice chips, applesauce, and to drink water. She came to a conclusion that I had already known for a long time. I can’t swallow worth a damn. Her recommendation ended up being that I have absolutely nothing by mouth. Although I didn’t necessarily agree that I could have nothing by mouth, it meant that I would not have to drink the barium. Drinking barium is a nasty business even when you can swallow well. The more I thought about it, the more I liked the idea of using a nasogastric tube. So the good part about her conclusions were that we were definitely getting the NG tube. The plan was that they would put it in about 10 PM Tuesday night and give me the barium. The G-tube procedure would be Wednesday morning.

One of the other issues that concerned me was I wasn’t getting my normal medication. I was getting by digoxin heart medication and my Flomax. But I was not getting my isosorbide which is a heart medication I take three times a day nor was I getting bumetanide which is a mild diuretic. They said the reason was that my blood pressure was a bit low and that you should not have either of those with low blood pressure. Usually my blood pressure is a typical 120/80 or thereabouts. They were getting top numbers barely above 100/70 something.

There was also an attempt on several occasions to give me some sort of injection that was a blood thinner. They said they were worried about blood clots. I guess it would’ve been from lying around in bed. I tried to explain to them I was going to have a G-tube surgical procedure very soon. I didn’t want to show up in surgery and have the surgeon all of a sudden notice I had been getting blood thinner and say “What the hell I can’t do this if he’s on blood thinner!” Every time I refused the blood thinner shots, I asked them to verify if it was okay to take the shot given that I’m scheduled for minor surgery in the next day or two. I never did get a reply. But they did not give me the shot so I didn’t worry about it. Even after the G-tube was inserted a couple of days later, they still wanted to give me the blood thinner. I continued to refuse because I knew in a day or two I was going to be putting on my back brace. The way it digs into me in various places I would’ve been a bruised up mess.

 

Names and Accents

Tuesday evening after the shift change I was pleased to see I had the same nurse that I had the first night. I said to him “Yesterday you said your name was Pete. Today I’m going to call you ‘Re-Pete'”. I also told a number of the other nurses the same joke. They all liked it. Unfortunately Pete had some bad news for me. We were not going to do the NG tube Tuesday night because we were not going to do the G-tube Wednesday morning. Somehow I had been misinformed and it was all pushed back to do the procedure on Thursday at my originally scheduled time. Other than the disappointment that everything was still pushed back until Thursday, my second night was uneventful.

The morning of Wednesday, May 25 I was visited by the usual parade of doctors starting with the early year resident, followed by the chief resident and eventually the attending. My attending was a woman named Dr. Maryam Massoumi. She is sort of an exotic looking woman with a fascinating accent that reminds me a great deal of one of my favorite actresses Shohreh Aghdashloo. I never have been able to pronounce the actress’s name. The first time I saw her was when she played a terrorist in season 4 of the TV series “24“. Mostly my doctor sounded like the actress but she actually resembled her a little bit. You can click on the links of their name to see photos and biographies of them. The actress always plays parts where she’s doing something sneaky. Most recently she has played a politician in the sci-fi series “The Expanse” where she is very sneaky. Her sultry voice makes you believe whenever she’s saying. That same voice coming from your doctor has a rather soothing effect. I got so interested in accent that I eventually later in the week asked her where she was from. It sounded Iranian or Persian (approximately the same thing) which is where the actress is from. However I didn’t want to say to her “Hey are you Iranian?” and then it turns out she is from some other Middle Eastern country that is a mortal enemy of Iran.

It was late in the week when I finally figured out a way to inquire. I told her outright that her accent had a soothing quality to it and I wondered what kind of accent it was. She said it was Persian and I successfully suppressed my urge to shout “YES! I nailed it!” I do think I probably said something like “I thought perhaps that was it.” She said she had spent lots of time in Brussels. If I had thought to Google her or look her up on the St. Vincent physician directory I would’ve seen where it says “Languages: English, French, Farsi.” In case you haven’t watched enough movies or TV shows about the Middle East, Farsi is spoken in Iran.

She said that she was concerned that my infection might not be entirely confined to my urinary tract. She wanted to do a chest x-ray just to make sure I did not have some sort of pneumonia hiding out. I had been told that after they put in the NG tube, they would need to do an x-ray to make sure that it was in the proper place. I suggested we save the trouble of two x-rays, put in the NG tube, and then do one x-ray for both. She agreed. It turned out that was a good idea for more than one reason. I wasn’t scheduled to get the NG tube until about 10 PM that night however to double up the x-rays we went ahead and tried to put the NG tube in the morning. We had difficulty getting the NG tube in and it took several attempts. If we had waited until that night we might not have got it done it all.

 

Pushing Your Limits

I’m sorry I don’t remember the name of my daytime nurse but she was really nice and did a good job. She tried to insert the NG tube three different times but it just wouldn’t go. One of the problems is that they thought I needed to be sitting upright in the hospital bed as high as I could go. I’m not used to sitting up without my back brace on. It makes me very slumped without the brace supporting me and that also makes it difficult to breathe sometimes. Naturally you’re going to gag if they stick a tube up your nose and down your throat. But I got pretty messed up and ended up sucking some saliva into my lungs. We had to give up after three tries.

Shortly after that, the girl arrived with the portable x-ray machine. We went ahead and did the chest x-ray even though we did not yet have the NG tube in place. X-ray machines these days do not use x-ray film. They are all digital. They have a large metal and plastic plate which looks like the plate that they used to use to hold the x-ray film. I don’t know if it has sensors built into it or if somehow it reflects the x-rays back towards the machine or how it works exactly. There’s no cable running from the plate to the x-ray machine so if it is a sensor not a reflector it must be wirelessly connected.

Again they wanted me to sit upright as straight as I could. She raised the bed as high as I could stand it. I did not think about the fact that then we needed to jam the plate behind me. I had already leaned forward as far as I could and then I had to go further still. Dad was there and he helped her stuff it behind my back. That was uncomfortable but not as bad as when they tried to take the plate out. As they leaned me forward to pull it out, I strained a muscle in my ribs on the left side. I don’t think I cracked a rib but I came awfully close to doing so. If I had done it on the way in, the x-ray would show whether or not I cracked a rib. But the sprain came as they were taking it out.

 

Fourth Time is the Charm

After our three failed attempts to get the NG tube up my nose and down my throat they said they were going to send up someone from radiology to attempt to do it. However there was another nurse across the hall who had more experience and she agreed to give it a try. This time we did not sit me up as straight. Given my sore ribs I didn’t think I could take it. She also used a slightly smaller tube than the previous nurse had used. While it was very uncomfortable and I did gag a lot, we ended up getting it down okay. I told the other nurse that she had no shame in her three failed attempts. The other nurse was cheating using a smaller tube and having me lie down where I was more comfortable. The truth is I think perhaps the first nurse did actually have it most of the way in during one or more of her attempts. But I was gagging so hard and aspirating saliva that it felt like it was in the wrong place. I think if she had gone ahead and I was able to cough up some spit we would’ve been okay.

After we had the tube in, they had to bring back the x-ray machine to do a second x-ray and see if it was in the proper place. I asked if they could do it with me lying flat rather than sitting up and they agreed. It turns out the NG tube was okay. Also the previous x-ray showed no problems with my lungs so that was good news.

I had hoped that once we had the barium in me, we would be able to remove the NG tube. Unfortunately that was not the case. They had a very good reason for wanting to leave it in. During the procedure of putting in the G-tube in my stomach, they wanted to use the NG tube to blow my stomach up full of air. That would push it forward against my abdomen wall. Then they can poke a hole into me through the abdomen and directly into the stomach.

Leaving the NG tube in was going to complicate things overnight. The mask on my CPAP uses a system called “nasal pillows”. They are the rubber things that stick into your nose about 3/8 of an inch. I wasn’t sure that I would be able to get the CPAP mask on my nose with the NG tube sticking out my left nostril. I laid there thinking about different ways we might do it. I thought maybe we could plug up my nostril that had the NG tube and tape over half of the CPAP mask just have it blow in one side of my nose.

While waiting for 10 PM to roll around, I tried to take a nap but without the CPAP on I kept having apnea attacks about every 60 to 90 seconds so I really didn’t get any rest. When we put the barium in at 10 PM it all went very smoothly. We got the respiratory therapist to come down and try to put the mask on me. They had taped the NG tube to the front of my nostril but we removed the tape and repositioned it off to the side. We then put the mask on and it did fairly well. It was leaking quite a bit but the CPAP has built-in sensors to maintain the proper air pressure even if there are leaks in the system. The leaks were not so distracting that I could not sleep with it. It went pretty well throughout the night.

 

Last-Minute Setback Averted

It’s Thursday morning May 26 and it’s the day to have the G-tube procedure. I wanted to leave my CPAP on as long as possible so that I was well rested and fresh for the procedure. My original appointment was for 10 AM in outpatient but that was my arrival time. I later learned that the actual time for the procedure was supposed to be about noon. However they later came in and said it had been pushed to 2 PM. At one point I tried taking the CPAP off and I had a real problem breathing without it. The combination of the irritation of the NG tube and spending three nights without humidified oxygen had messed up my throat really bad. Every time I tried to breathe it felt like my throat was closing up. I got really worried because I didn’t think I would be able to take the CPAP with me during the procedure. If I could not find a way to wean myself off of it by the time of the procedure, we would have to cancel.

After about five minutes with the CPAP off I had to have them put it back on me again. Shortly thereafter dad arrived. I kept doing experiments when I would try breathing through my mouth without using the pressure of the CPAP. Over the course of the rest of the morning I gradually started breathing a little easier. It was a good thing that they had pushed the procedure to 2 PM instead of the original 12 noon start time. I needed that time to get my lungs going again. I had told the nurse I was having difficulty getting off of the CPAP. She set up a regular oxygen nasal cannula for me to use oxygen when I took off the CPAP.

Sometime around 1 PM I was able to switch from the CPAP to the straight oxygen. One of the things that helped was that someone from respiratory therapy department came down for a visit. She agreed to let me use the humidifier in the oxygen line. More on that story later. I think the humidity and just getting wider awake and swallowing a little bit got my throat in better shape. I was able to keep the nasal cannula oxygen on during the trip to the procedure and throughout the procedure and the way back afterwards. By the time it was all over with I was breathing normally but it was nice to have the oxygen just in case.

 

Time for Surgery

They eventually came to get me at about 1:30 PM. Dad was able to go down with me. They rolled me into a pre-op area and the doctor who was going to do the procedure came out and had a conversation with us. He did a great job of explaining everything that he was going to do.

One of the questions I had had from the beginning was “How do you get the stomach to stick to the abdomen wall once you get the tube in. He explained that there would actually be a couple of stitches. He said they were like little plastic T-shaped gadgets that holds tags on to clothing when you first purchase it. With dad and I being more familiar with construction then retail clothing, we said “You mean like a Molly bolt”. He explained that the stitches would come out after 10-14 days. I asked him if a visiting nurse could do it. Perhaps the nurse from Acme Homecare could remove them. I knew I would need to be recertified before my home health aide could return and I would be getting a visit from their nurse. He said possibly yes. I would also need to follow up with my regular doctor and he might be able to do it.

He explained that the reason for the barium was so they could see where your transverse colon is. They have to make sure it’s out of the way. I told him that I had previously had 12 inches taken out of my descending colon and that that probably repositioned where my transverse colon was. He said that they would inject my abdomen with local aesthetic and I would not feel a thing. I told him my old standing joke where I used to think that “local anesthetic” meant that it was produced here in Indianapolis by Eli Lilly.

He said that they would give me a mild sedative to keep me calm. I told him I wanted the absolute minimum because I was concerned about my breathing. I explained that if something happened in an emergency they would not be able to intubate me in my mouth because my mouth doesn’t open. I explained anytime I was intubated they had to do it through the nose. He said that he was going to give me Versed which is a type of anesthetic that makes you forget. After the procedure was over I am 99.9% sure that I remember all of it. There was a running conversation throughout it and I don’t remember any gaps. But then again if it is supposed to make you forget, who knows when I missed. I only recall feeling the tiniest bit groggy.

He told my dad that the procedure would only take 15-20 minutes but by the time they rolled you into the operating room, get you transferred to the table, shave your hairy chest, drape you, get all of the equipment in place it actually took a little more than twice that. I told them that I recalled being in an OR that was this one or one just like it before. When I had been in the hospital for my bowel resection, they had to put a central line into my juggler and had used x-ray assistance to do so. They told me there were actually 4 rooms just like this one and I would have been in one of them for such a procedure.

The procedure itself was painless. I felt a tiny little stick of the needle for the first shot of lidocaine. Sort of like in the dentist when you feel the first shot but none of the others. Apparently my intestines were already pushed out of the way so they had no trouble getting to my stomach and getting it blown up into the proper position. You can feel the pressure when he would poke holes into me but it didn’t hurt. Also after everything had worn off I did not have any pain whatsoever.

They rolled me back out to the waiting area and went to get dad. He was a little bit concerned about the length of time but I explained to him the procedure itself did indeed take about 15 minutes but it was all the stuff getting ready that took the extra time. Because I really hadn’t been sedated, they didn’t need me to stick around for “recovery time” right you would after some surgeries. They wanted to take me for an ultrasound after the procedure. I suggested to dad that he should go get something to eat and meet me back at the room later.

I seem to have lots of bad luck with the transport people. The first evening we couldn’t get anyone to bring my wheelchair up from the ER. The guy who was going to take me to the ultrasound lab instead took me to MRI. He delivered me to their waiting area and handed them my chart. I had seen the signs on the wall saying it was MRI but I figured perhaps they shared a common holding area. He was gone less than five minutes when he returned and said “I took you to the wrong place.” I eventually got to the ultrasound place okay.

The guy who did the ultrasound was really nice. The way I was laying I could see the screen and so I asked him some questions along the way. He pointed out my stomach, liver, kidneys, etc. We also talked about other things. I don’t know how the conversation got around to gambling. Perhaps we had started talking about sports and from there I said that I occasionally bet NFL games. It turns out this guy uses the same gambling websites that I use for poker and sports. I said to him “Either you have a really good poker face or you didn’t see anything shocking. At no time did you suddenly gasp and say ‘my God look at that!'” He said he didn’t really see anything except of course that my insides are kind of rearranged and that I have an enormous bladder which I had already told him to watch out for. He said there was a tiny bit of fluid loose in my abdomen but it wasn’t anything to worry about. I’ve always wondered if there wasn’t something extra sloshing around inside me so I wasn’t surprised. I could write a whole blog on that topic.

When I returned to my room I got online and posted a brief newsflash on Facebook saying that the procedure was over and went well. Then I posted a follow-up with more details. By the way they did take out the NG tube once the procedure was over with. I don’t recall if they took it out in the radiology department or if I got it out when I returned to my room. But it was a relief to be free of that.

 

Not so Many Rules after All

I mentioned that just prior to going for my procedure, a respiratory therapist dropped by and put the bubbler in my oxygen line. I said there was more to that story so here goes…

Somewhere around Tuesday or Wednesday I was visited by a nursing supervisor who asked if I had any complaints about the care I was getting. I told her that all the people had been really great. She specifically asked if anyone stood out and I told her that Pete/Repeat was an especially nice guy but everyone had been wonderful. As a last thought, I said to her “I’m generally not a complainer but since you asked my opinion… I do have one bit of a complaint.” I told her the story about the respiratory therapist who said that “hospital policy” was that you could not have a bubbler in your oxygen when used with a CPAP. I speculated with her as I had done every time I told the story. Probably someone had their CPAP cranked up too high, the little plastic bubble bottle was defective, it popped open, the lawyers got involved, and now we have a stupid rule. She took note of everything that I said. She was unaware of such a policy.

Now on Thursday just before I went to my procedure, I was visited by the respiratory therapist. She asked me about the humidifier bubbler and I told her the whole story. She said that she had never heard of such a policy. She put the bubbler in after getting permission from her supervisor. A little bit later in the day, that supervisor stopped by and talk to me about it. She too had never heard of such a policy and she was a supervisor! I told her that I had talked to the nursing supervisor about it even though I don’t generally raise a fuss. The respiratory supervisor said that the nursing supervisor had sent out an email that had gone up and down the chain of command and gone to her own supervisor. That is the daytime respiratory therapy supervisor got email from her boss about this so-called policy that in fact did not exist.

I told her that this had occurred Monday night at about midnight. I did not get the name of the person that told me about this inflexible hospital policy. The supervisor told me she would talk to the night supervisor and try to figure out who had been on duty that evening and where these crazy ideas came from. I never did hear any more about it but it was kind of rewarding to think that somebody was going to get called in on the carpet and get a talk about making up rules. Perhaps she worked previously at a different hospital that had such a rule. Who knows.

I said throughout I don’t like to complain. Actually I do like to complain but I don’t like to raise a big stink if I don’t think there’s any chance of it doing any good. I did a lot of complaining to the nurses, on Facebook, friends and family. I just figured I was up against an entire hospital bureaucracy and wasn’t going to get any relief. I was wrong. I’m glad the nursing supervisor asked my opinion because I do like giving opinions :-). For once, speaking up against bureaucracy turned out to get results after all.

 

Tube Me, or Not Tube Me?

I will give you a “TMI” (too much information) warning at this point. If you don’t like to read about the somewhat personal, gross stuff you might want to skip this section.

One of my big concerns throughout the hospital stay was that I did not seem to be urinating very much despite the fact that I had an IV of saline, D5, and antibiotics running 24/7. At one point they also noticed my potassium was too low. Giving you potassium by IV is always tricky because it burns your veins going in. If they can get it diluted with other IV stuff it’s not too bad but if they have to give you a lot of it, it can be quite painful. Anyway it seemed to me and everyone else that they were putting lots of fluid into me but not much was coming out.

At one point they did an in-and-out catheter and got over 1000 mL of urine. From time to time they would do an ultrasound on my bladder that would measure the volume of liquid. One time in the hospital previously they noted that I had 700 mL and I didn’t even feel a tiny bit full. Throughout this experience it was common for them to measure 800 or 900. They told that a normal person would feel like they were ready to explode at 900. I barely felt anything at that level.

After they took the 1000 out, it took a long time for my bladder to fill up again. They kept measuring it with the scanner and it would gradually increase. But I never felt like I had to go much. Somewhere along the way they finally called in a urologist. Up until that time I had been treated by internal medicine doctors and not specifically urologists. Sometime on Friday, the day after the G-tube procedure, they tried another in-and-out catheterization but it would not go in.

In addition to my severe scoliosis (curvature of my spine) both of my hips have been dislocated for many years. In fact one x-ray revealed the ball part of the ball and socket of one of my hips has been grinding in my pelvis for so long that it has ground itself a new socket. That was in x-ray maybe 20 or 30 years ago. God knows what kind of mess my hips are in at this point. So that, combined with my freakishly large bladder means my internal anatomy is pretty messed up. The path into my bladder has a lot of curves and makes it difficult to put in a catheter.

In addition to the urinary issues, when you pump strong antibiotics into you over a long period of time, diarrhea is a natural side effect. You end up killing all the good digestive bacteria along with the bad stuff. For the last couple of days of my hospital stay I was extremely, extremely loose. Fortunately I was always able to get on the bedpan in time.

At one point the urologists called for a cart to be sent from the O.R. that they described as “cysto-to-go”. It sounds like the name of a fast food restaurant for urologists 🙂 Basically it’s just a portable cart with a urinary cystoscope and everything you would need to go with it. I was visited by a pair of nurse practitioners from urology and I talked them out of the idea of anchoring a Foley catheter. That was early on Friday. However late Friday evening a urologist who is one of the partners of my usual urologist came in. He talked me into going ahead and putting in the Foley since he wanted to do it using the scope. I told him about the difficulty my regular urologist has always had catheterizing me. He usually does it using a guidewire. Anyway late Friday night he brought in the cysto-to-go and did the procedure. It went reasonably well and it was good to know I was going to be really empty for the rest of my stay in the hospital. I probably should have let them do it sooner.

It’s now safe to continue reading if you want to avoid the gross stuff.

 

Tools and Talent Is All It Takes

After the G-tube procedure, they had attached a low-power suction tube onto it to make sure there wasn’t any drainage or bleeding. On Friday, the day after the procedure, they disconnected the suction and started pumping nutrition using a continuous feed pump. Throughout that day they gradually increased the rate and if that went okay (which it did) they would start doing what is called a bolus feeding they have a large syringe of about 60 or 70 cc and just pump it in by hand.

They were talking like I could go home Saturday or Sunday. Saturday would’ve been okay but Sunday would’ve been tough because it was race day. The only time you can get in or out of my neighborhood on race day is during the race itself. If you’ve ever been in the hospital, you know that they never release you on any particular schedule. There’s always some last-minute form that needs to be signed or an IV that needs to be removed but the nurse is too busy to do it. Even if dad could get to me, the idea that we would get released and arrive home during the race was really unrealistic. Also because the race was sold out for the first time in decades, they were going to allow it to be shown live on local TV. I didn’t want to have to watch it recorded on the DVR because I was traveling during the race.

Before I can think about going home, we had to do some work on my back brace. Now that the G-tube was in place and there was no suction connected to it, we could experiment with putting the brace on me and decide where to cut the hole. Dad had brought a tape measure and a battery-powered drill. The drill have a large drill bit about an inch and a half in diameter. It’s the kind of drill bit that you would use to cut a hole for a doorknob. The one thing we didn’t have was a marking pen to mark the spot to drill. But we borrowed one from a nurse.

My back brace is in 2 sections, a front and a back piece. We slipped the back piece underneath me and then measured from each side how far it was left or right to the G-tube. Because we were measuring across my belly which was going to be inside the brace, the overall distance was slightly less than what it would’ve been with the front half of the brace on top of me. We needed to get the ratio of distances left or right and then measure the entire distance on the outside of the front half of the brace. As it turned out the tube was going to land within a half inch of dead center so there really wasn’t much math involved. And the distance across my chest was only about a half inch less than the outside measurement across the front of the brace.

The hole that we were going to cut would have to be a vertical slot about an inch and a half wide and maybe 3 or 4 inches tall. We start out with the brace on me very low. Throughout the day I gradually slip down inside of it and the brace rides up. So throughout the day the hole would move up relative to the G-tube. Dad took all of the measurements, got in his go-go scooter, went down to the van in the parking lot and cut the hole. When he brought it back it looked as though it was going to work perfectly.

 

The Mystery Pain Returns

On a few occasions over the years, I have gotten some mystery pains around my back in the shoulder blade area and in my chest around my ribs. It is an area where the top edge of my back brace puts the most pressure on me. It doesn’t hurt much during the day when the brace is on. It doesn’t hurt when I take the brace off. It only hurts hours later in the middle of the night. It feels like a cross between muscle cramps and a burning sensation sort of like heartburn. Most of the time when I’ve had it, it wasn’t too bad and it just went away. Probably my most memorable episode was in 2006 when I was in the hospital having intestinal surgery when my intestines ruptured. It was several days into the ordeal and I had pain that felt like heartburn. For various reasons they couldn’t give me Rolaids or Tums without specific doctor’s orders. But they already had orders that I could have morphine because of my surgery pain. So I had them give me a shot of morphine instead of an antacid. Here’s a link to a previous blog post about that. http://mylife.cyborg5.com/rolaids-vs-morphine/

There was another incident in 2014 when I woke up in the middle of the night with pretty bad chest pain. Although it did have a bit of a burning sensation associated with it, this felt more like real chest pain and it was very bad. I tried calling dad but for some reason he was sleeping especially sound and I couldn’t wake him up. After about a half hour the pain went away. If it had persisted and/or I had gotten him awake I would’ve called 911. A week or two later I had it again in the middle of the night and although it let up for a while, by morning it was back again and pretty bad. This was May 1, 2014. On that occasion I did end up going to the hospital in an ambulance. They checked all of my cardiac enzymes and EKG etc. and said there was nothing wrong. I spent one night in the hospital and went home the next day.

Unfortunately I’m one of those people who watches too many medical TV shows. On several shows I’ve seen them talk about something called “crush syndrome”. It’s whenever they rescue someone at a collapsed building or someone who got buried in wet concrete that solidified too quickly and stuff like that. They say that the pressure on the person’s body causes toxins to be built up in the tissue and then when they relieve the pressure and the blood flow returns, all of those toxins come pouring out into the bloodstream and they can be really dangerous. It got me to thinking that perhaps the pressure of wearing this tight back brace all day long make something weird build up inside me and then when it finally cuts loose I get the burning pain. But if the TV shows are accurate, there’s always a race against time to quickly give the patient whatever they need to get rid of the toxic stuff immediately. My painful situation is always delayed hours after taking my brace off. My situation doesn’t really line up with the sort of emergency depicted on TV.

Because I have had one of my biggest instances of this particular pain while in the hospital to begin with, I’ve often wondered if it was because I was missing some of my regular medication. One medication I routinely miss while in the hospital is the daily dose of Zyrtec antihistamine. Even though it’s an over-the-counter medicine it’s probably only to be used “as needed” but my sinuses are such a disaster area that I take one every day religiously. I also use at least one sometimes two different kinds of nasal steroids. Maybe there such a thing as Zyrtec withdrawal. Perhaps I am getting some sort of minor version of crush syndrome but the Zyrtec counteracts it.

So anyway enough of the history of my weird chest pains, Friday night May 27 in the middle of the night, I started getting those familiar weird pains. In addition to not having any Zyrtec for several days, I had also been missing my isosorbide which is often prescribed for angina (i.e. chest pain). I don’t recall missing taking any isosorbide on previous occasions where I’ve had the pain. Anyway I asked the nurse for some Tylenol and he took some pills and crushed them up in a pill crushing gadget. He dissolved them in water and put them into my G-tube.

The Tylenol didn’t seem to help at all and if anything the pain was getting worse. On the proverbial scale of 1 to 10 it started out as a 2 or 3 and now was clearly up to about 5 and getting worse. This time I did not have standing orders for morphine. The nurse got in touch with whatever doctor was on call to try to get something stronger. They didn’t want to jump all the way to morphine so he prescribed a pill called Tramadol. Again they crushed it up in a pill crusher, dissolved it in water, and put it to the G-tube. After about 15 minutes I got this really warm rush feeling all over and the pain started to fade. This was about 7 AM. I posted on Facebook about four hours later that everything was okay.

My theory about so-called “crush syndrome” was fading rapidly. Although I did put my brace on earlier that day. It was only on me for about five minutes while my dad did a test fitting to figure out where to put the hole and then again to see that all was in the right place. I don’t believe we even tightened the brace all of the way and I did not even sit up with it on. Perhaps this particular pain was from the back strain when we did the x-ray. There had also been this week an incident where the nurses were sliding me up in the bed towards the head of the bed. You naturally slip down further into the bed whenever they raise your head up. They used to put something called a draw sheet completely underneath you. They could use it to yank you around. But for some reason the draw sheet was only beneath my rear end and part of my back. They needed the draw sheet to be clear up under my head and shoulders as well because I got kinked up pretty badly one time when they scooted me up. As I was describing all of this to a friend of mine several days later, she suggested that because it was a combination of muscle pain and a burning sensation perhaps it was a pinched nerve. I’m beginning to think that may be the thing. Although I didn’t have any more pain that Friday night/Saturday morning, it was the last incident of this particular problem.

 

Phenomenal Support

If you have happened to click on any of the Facebook links throughout this blog post, you have not only seen my thoughts in real time about the events I’m describing, so you have seen the tremendous number of well-wishers in the comments and even more “Likes” from friends, family, and even mild acquaintances who happen to be on my Facebook friends list. The prayer support was phenomenal.

It’s always been tradition that whenever I go to the hospital, I called my friend Margaret Arthur who is been in charge of the St. Gabriel prayer chain for as long as I could remember. If you have a prayer request, you give her a phone call and she calls 4 other leaders of the chain. They in turn each call one or two people who calls the next person and so on. I’m not sure how the chain is organized these days but at its height we had 30 or 40 people in the chain. Sadly Margaret passed away a couple of months ago. She was not only the “go to” person for prayer support, she was also a great source of information about everything that was going on in the parish. She would call me with frequent computer questions but in recent months her mind was not what it once was. Even when she was in good shape she was a little bit flaky 🙂 However she had to give up much of her volunteer work because she just wasn’t sharp enough to handle it anymore. I always knew what was going on in the parish, who was sick, who was in a nursing home, and who died. When I knew she was getting worse, I was worried that I would not know if she died because she was always my source of information about such things. Indeed when she did pass away, I did not hear about it until several days after the services.

I don’t know if we still have a telephone prayer chain but we do have a list of people that we pray for at mass each Sunday. At one point throughout the week (I forget when) I called St. Gabriel to let them know I was in the hospital. I had previously sent email to Fr. Mike looking for a time where he could anoint me prior to the G-tube procedure. I did not hear back from him right away and as it turned out I really didn’t think I needed to be anointed because I was not going to have general anesthetic. Not only was I feeling the loss of Margaret Arthur, I wasn’t really sure who would be answering the phone at St. Gabriel. Parishioners Linda Miller and Barb Williams had shared secretarial duties in the past but both of them had recently moved on to other things.

When I called St. Gabriel, the new receptionist reminded me of something I should’ve remembered. Fr. Mike was gone for a trip to Guatemala where we do missionary work at a sister parish down there. She said that he would be home for the weekend but would probably be very busy getting follow-up after his trip. I told her to go ahead and put me on the Sunday prayer list but that Fr. Mike did not need to visit unless he was already making rounds at the hospital. I would probably be home by the time he got around to it. After I returned home, I did get a visit from Fr. Mike even though I told him I was doing okay. It was nice to spend some time just chatting with him and to show him around my office with all of my computer equipment.

One sort of new person in my support system was a woman I have known for 40 years but had only recently reconnected with her through Facebook. Ellie Vinci was a dear friend from my college days. Although most of my time at IUPUI was spent at the 38th St. campus, I did spend one semester at the downtown campus and that’s where I met Ellie. I could probably do multiple blogs about my relationship with her but the short version is she was the first girl I ever went on a date with who was not in a wheelchair. She also took me to my first hockey game. Although she was normally a very mild-mannered and sensitive person, when she was at a hockey game she would scream and yell and curse like a sailor. I’ve often described her as a lovely sweet person who taught me a deep appreciation of violence on ice 🙂

Anyway… The week before I went in the hospital for some reason I decided to search for her on Facebook. We have talked several times off and on over the years. We have run into each other different places that we had not stayed in close contact. Just as we reconnected on Facebook, she said she was going on vacation with her two daughters to visit Rome and Sicily. With a name like Vinci you can expect she has connections to the region. In fact she traces her ancestry to Sicily. On one of our dates we had gone to see “The Godfather Part 2”. She said at the time “It’s about my people” although I don’t think she was claiming any actual Mafia connection… Just Sicilian connections.

While it I was in the hospital it was fun to watch all of the great photos she was posting on Facebook while in Rome. I told her to say hi to the Pope for me. She later posted that she had prayed for me at the tomb of St. Peter.

It wasn’t just Facebook friends or friends traveling in Rome that were supporting me. I also had a few visitors in the hospital. Our friend Jack Brake stopped by for a visit. I play poker with him from time to time and he purchased our shares of our cabin on Cordry Lake. He was excited to tell us about selling the old pontoon boat that we had and purchasing a new one. At one point his wife called and reminded him that he was late for dinner.

On Saturday my friends Rich and Kathy visited. You cannot find more loyal friends than them. They probably would’ve been there sooner but Rich had been out of town at a bowling tournament in Reno Nevada that he attends every year. He had just gotten home in the middle of the night Thursday night and he took Friday to rest up. I got to fill them in on all of the details of what had been going on even though they had been following on Facebook as well.

I also had the opportunity to talk to my sister Carol on the phone but neither she nor Karen were able to visit me. It wasn’t really necessary but it might have be nice to give dad a break. I’m sure if it had been serious they would have been there plenty.

Not much happened on Saturday or Sunday. I mostly just laid around and watched TV. Dad had decided that he could get out of our neighborhood on Sunday if he waited until the race started. Then he could hang around a little bit late and go back home after the traffic cleared. We watched the race together although he tended to sit in the chair and fall asleep quite a bit. Normally that’s not a problem when you have a DVR. If something big happens while watching a race and he missed it, I could typically just rewind and show him my own replay. No such luck in the hospital.

 

Time to Leave

I slept very well Sunday night and the only bad part was I overheard some nurses talking in the hallway about Game of Thrones. I was two episodes behind and I overheard some serious spoilers. Most notably I heard about an incident with Hodor. I had successfully avoided Internet spoilers and resisted looking at articles that said “Now we know why he is called Hodor”. I thought about yelling out to them to shut up but I actually wanted to hear what they were saying. They sounded like very knowledgeable fans.

Things naturally move slower on the weekend in the hospital and on a holiday like Memorial Day Monday I expected things to go even slower. I did get definitive word from my attending physician that I could definitely go home. I did not have my usual attending physician with the fascinating Persian accent. When the guy introduced himself I said “So you are the guy who drew the short straw and had to work on a holiday.” He said they all take turns and it comes out even in the end. I suppose I would rather work Memorial Day than Christmas or something. At least I was definitely going home. I celebrated by posting some Philip Phillips “Home” on Facebook.

Because that pain pill had worked so well Friday night, I asked if they could write me a prescription for 6 or 8 of them so that I can have them on hand on those rare occasions when the pain returned. They had no problem doing that and I ended up getting a script for 12 of them. They were also going to change one of my medications. The Flomax that I take to help me relax my prostate so I can urinate has a warning that you should not open, crush, or chew them. That meant it could not be crushed, dissolved and put in the G-tube. They had substituted a different drug. This was all news to me because I have been chewing them for years. Well not exactly. They come in a plastic capsule which normally would have been too big for me to swallow even when I was doing pretty well swallowing. But the capsule is only about one half full of whatever powder is in there. I had always just let them soften up in my mouth, smash the outer capsule part flat, and swallowed the flattened capsule. Most of the time the contents would not spill out but even if they did, they did not taste bad. In recent months I had been actually chewing them up with no apparent ill effect.

My release orders were going to stop my diuretic bumetanide, stop the isosorbide, and switch to a different prostate medicine. I knew right away I wasn’t going to do any of that. I was going back on my regular medication and taking it orally like I had always done. But of course I did not tell them any of that. A week or so after I got home I had an appointment with my regular physician Dr. Kyrouac and he had no problem with me going back to my regular meds.

One of the things that typically delays your discharge from the hospital is the removal of catheters and IVs. I had no problem talking them into removing the catheter. That went promptly. But in the middle of the morning the nurse came in to hang another bag of antibiotic for my IV. I said “But I’m going home and they are giving me a different antibiotic for the next few days. Do we really need to do this one?” She insisted that we do. Then she dropped a bombshell on me. It was going to take 4 hours to finish.

it’s hard enough to get me dressed and get my back brace on in an unfamiliar bed. We also had the new G-tube to wrestle with. Neither dad nor I wanted to try to dress me with an IV hooked up. I have to wear an undershirt beneath my brace and the only way to get my arm through it would be to temporarily disconnect the IV and reconnect it. So we just waited an unnecessary four hours for the IV to finish.

But then it didn’t. It ended up taking an extra 45 minutes. Apparently the drip rate on the IV pump compared to the amount of fluid in a bag doesn’t always exactly finish at the appropriate time. So when it was finally over after nearly 5 hours, I thought I was ready to go and then we got another bombshell!

You just can’t stop an antibiotic IV. You have to push saline through it at the same rate that the antibiotic was going and that was going to take another hour! I was furious! One of the nurses, not the one who insisted on the IV antibiotic, asked me if I wanted to complain to a supervisor. Given my recent success with supervisory complaints I probably should have. But I didn’t want to do anything that was going to piss off the nurse who was letting me go on to do anything that would slow me down it any other way. I just thought the whole last dose of antibiotic was unnecessary and I also didn’t like the idea that 4 hours ended up being about 6.

Eventually it was all over with. Dad got me dressed and the brace went on reasonably well. After being in the hospital connected to IVs for days I had gained a lot of water weight. I’m always bloated after these things and you could tell that my brace did not close nearly as tightly as it usually does. Dad got me dressed and then nurses brought in a Hoyer lift to pick me up and put me in the wheelchair. They use a totally different kind of sling seat than the one that I use. Nobody uses the kind of seat I use. For the most part my seat is reasonably comfortable and pretty safe but one of these days I’m thinking about trying out some of the newer kinds of slings. If I need to sit on the toilet for a long time it’s a bit uncomfortable. Also I use a different seat going from the bed to my bathtub and that one isn’t quite as safe as I wish it was.

Having not set up in the wheelchair for days and having a brace on me that wasn’t in its normal position, I did not even attempt to drive myself down to the car. We had a nurse use the attendant joystick on the back of the chair to drive me. Dad drove his go-go scooter and carried everything else we had. He had already taken my laptop to the car during the four hour delay.

On the ride home my belly felt kind of weird poking through the new hole in the brace. It was a very strange feeling but fortunately it didn’t last very long. We were going to stop at the pharmacy to fill the prescription for my oral antibiotic that I would need to take for the next two or three days. I also wanted to get those pain pills just in case. I was not going to fill the Flomax substitute medication because I was going back to the Flomax. Unfortunately the Walgreens at 38th and High School Road was closed for Memorial Day. The sign in the window said there was one open at 16th and Meridian. We decided I could do without filling the prescriptions for another day. That was a decision I would later regret.

According to this post on Facebook we didn’t get home until about 5:45 Monday evening. They had sent us home with a couple of one liter bottles of the using liquid and a syringe to do the feeding. Dad’s first attempt at doing it was uneventful.

 

DVR Damage Assessment

We have two DVR’s in our home. One in the living room for things that dad and I watch together or that he watches on his own. The other one is in my bedroom and is only for stuff that I watch. I spent the rest of the evening going through both of them to see how much damage had been done by recordings overflowing in my absence. It is a proven fact that no matter how much capacity I have in a DVR, it’s never enough. Both of them are always 90-95% full. Bright House allows you to remotely schedule something to record using a webpage interface. You can also cancel a scheduled recording. Unfortunately you cannot see how much free space you currently have and you cannot see what a list of what you have recorded. I’m not talking about being able to watch your shows remotely. I just want to see what I have recorded and possibly be able to delete it remotely. You can watch many shows online especially on demand shows. But you really cannot fully manage your DVR away from home.

Sometime in the middle of the week I told dad to erase some shows from my DVR. I Have a Backlog of late-night shows like Jimmy Fallon and Stephen Colbert that I knew I could delete and free up some space. I would’ve liked to have seen some of those shows but missing them was no big deal. Unfortunately I did not give dad any instructions about the living room DVR. I had some old movies recorded when the IFC channel a marathon of 5 movies about time travel. I was looking for a block of time to binge watch them. They were the oldest things on the DVR but I had them protected with the “do not erase” flag set. There was a bunch of other stuff on there that was pretty old that I didn’t care if it got erased. I understood that if the machine overflowed, the oldest unprotected stuff would go first. There was enough of that that I was certain any newer shows especially dad’s shows would not be touched. I should’ve explained all that to him but I didn’t. He saw the living room DVR reach 100% so he deleted some of those old movies thinking that the old stuff was fair game. I later had explained to him my system. In some ways the older a program is, the more irreplaceable it is.

In the end the damage wasn’t too bad. A couple of the shows he deleted I was able to rerecord. A couple of those rare sci-fi time travel movies were lost but I will find them again eventually. There were actually fewer deletions that I had been expecting. The same was true in the bedroom. I lost a few things I wish I protected but there was nothing I was going to lose any sleep over.

 

The Pain Returns

I went to bed about 8:30 or 9 PM which is a little bit early for me but I was a bit tired after a stressful day. I watched some TV in bed but went to sleep before midnight which is early for me. I’m usually awake until maybe 1 AM or so. Dad went to sleep early as well. He was still suffering pretty badly with pain from his shingles outbreak. Unfortunately in the middle of the night my strange back pain returned. I tried some liquid Tylenol but that did not help and the pain got worse. We probably should’ve gone to the other pharmacy to get those pain pills but I only had the pain three or four times in 10 years. I didn’t really expect it to return so quickly.

Dad has some pain pills and normally I’m the strictest person you will ever find when it comes to the “don’t take other people’s prescription medicine rules.” However I was in pretty bad shape. He had two different doses available and I took one half of the smaller doses. We ground it up, dissolved it, and put it in the G-tube. That helped a little bit but not much. An hour or so later I took another half. The pain eventually went away but not as easily or as quickly as the pills that I had in the hospital and that I would eventually get filled once the pharmacy opened.

I slept late the next day because we had been Away from 4 AM till 6:30 AM dealing with the pain. The company that was going to supply me with feeding liquid brought by a week or so worth of supplies. They told me they would also be sending a month’s worth by UPS a few days. The pain did not return Tuesday night but I did get another spell Wednesday night at about 2 AM. This time I had my own prescription and it took care of things right away. Fortunately I’ve not had any recurrence in the past three weeks. But if it ever does come back I still have plenty of those pills in reserve.

This blog is already over 13,000 words. I think will wrap this up for now. At some point I will do another blog post talking about everything that has happened since I returned home.

I Went to Communion Today.

For a lifelong Catholic that isn’t necessarily an extraordinary statement and to be clear I always receive communion when I go to mass. But it’s been a many years since “I WENT” to Communion. The difference between receiving communion and going to Communion is that for the first time in years I was able to go up in the normal communion procession along with the rest of the congregation. I went to it. They didn’t bring it to me.

In recent years and had become so difficult for me to drive my motorized wheelchair that I asked my pastor the late Fr. Larry Crawford if he or one of the other Eucharistic ministers could come down the aisle to where I sit and bring me communion. Even when I was still able to drive my old wheelchair, I had to put the stick in my mouth to steady my hand on the wheelchair control. It got to be too difficult to drive up, take the stick out, receive communion, put the stick back in my mouth, get my arm in the proper position to drive, and then drive back to my pew. He said it was no problem because he would send Eucharistic ministers down the aisle to give communion to other elderly and disabled people.

After Fr. Crawford retired and unfortunately passed away shortly thereafter, our new pastor Fr. Mike has always come down the aisle to bring me communion. In the three or four years he’s been here that’s the way it’s always been.

But now with my new power chair that I can drive using a joystick that I control with my lips, for the first time today I drove up in the normal communion procession and took communion just like everybody else.

It was a very good day.