Frampton Comes Alive Again… And so Do I

Last Friday I went to Deer Creek Music Center with my sister to see a concert featuring The Steve Miller Band and Peter Frampton. It was the first concert I’d been to in 2 years and the first evening event I had ever planned since my hospitalization in December 2016. This is the story of my decision to risk going to the concert despite my concerns about stamina. I talk about what the concert meant to me in light of my health risk and additionally as a nostalgic look back at some of my favorite music from the 70s.

Concerns Over My Stamina

There were lots of other concerts and activities over the past 18 months that I would’ve liked to have seen. Among them Lady Gaga, Billy Joel as well as numerous other hockey games, movie opportunities, and church events. Since I’ve been on a trach and my health hasn’t been all that great the past year and a half I just didn’t think I would have the stamina for a late night event. I’ve also resisted the opportunity to go back to teaching class at my church because I don’t want to make commitments to be somewhere when I’m not sure it’s going to be a “good day” or a “bad day”.

In the months following my hospitalization it was not unusual for me to have problems with my back, hip, or other issues that would send me to bed in the early evening or even sometimes in the afternoon. Although I have proven that if I take my suction machine with me I can safely go to daytime events such as movies or afternoon hockey games, sometimes I have a really bad lung day that can require me to be suctioned as frequently as every 30 to 45 minutes.

Even on a good day stamina is an issue. I typically start my final G-tube feeding at about 8:30 PM and go to bed immediately afterwards. I watch TV until about 11 PM when dad comes in and puts me on the ventilator. Although I used to watch a lot of the late-night talk shows, it’s not unusual for me to fall asleep right away after a few minutes of the evening news. I still watch the talk shows but I watch them on DVR the day after.

However in the past few months things of been relatively calm and stable. It’s been a long time since I had to go to bed really early. On a couple of occasions there have been family gatherings here in which I didn’t get to bed until after 10 PM and although I was tired, it wasn’t too bad. Of course it’s one thing to say I can stay up late when I’m here at home with family and can go to bed whenever I want. It’s something entirely different to spend major dollars on concert tickets, drive to the far northeast side of town, and tried to stay up till midnight.

I watched the concert schedule closely looking for someone that I wanted to see as a test case. They had to be someone worth the money and effort to try to go. But they had to be someone not too special that I would be horribly disappointed if I had to cancel at the last minute or perhaps worse yet that I would feel compelled to risk going even if I really wasn’t up to it on that particular day.

Let’s Go

When I saw that The Steve Miller Band and Peter Frampton were coming June 15, I thought long and hard about it and finally decided to go. I had discussed it with my sister Carol and she was on board. She had some health problems of her own in May but had recovered from those. She still going to have some follow-up surgery but not until late June. It seemed like everything was aligning just right to make this possible. There were other shows in July or August that I might have preferred to see but I was concerned the weather would be much too hot. Mid-June was more likely to be reasonable temperatures.

When I finally decided to purchase tickets, I was fairly certain they would be available at this late date. Neither of these bands are particularly hot superstars likely to be anywhere near sold out. Although you have to be a little bit picky because you don’t know what the availability of handicap seats will be, I was pretty confident I would find something.

My usual seats on the left side wheelchair section were booked reasonably full. The right side wheelchair section however only had one pair of seats taken and the rest was open. For some reason whoever bought those seats did not take the preferred location at the left end of the aisle which gets you just a tiny bit closer to the center and a better viewing angle. I clicked on the tickets and ordered them.

Much to my surprise, the tickets were over $100 each. Three or four years ago I had seen other 70s groups like “Yes” or “Journey” and only paid about $60 each. I had paid a little over $100 to see “Elton John” which was quite reasonable considering what a superstar he is. So apparently ticket prices have really gone up since the last time I tried to buy anything. I think you can still get lawn seats at Deer Creek for as little as $20 but that just doesn’t work for me in a wheelchair.

Although I usually like to sit on the left side because it’s easier to get to that section from the main courtyard of the venue, it turns out that the right side wheelchair seats are a better choice because they are constantly in the shade. Last time I went to see “Yes” it was over 90° and I really roasted. It was the hottest I’d ever been at a concert. There is a canopy over the seating area but as the sun sets, it shines under the canopy and almost right in your face until nearly sunset. I watched the weather forecast all week long. There had been a lot of rain the entire week. In contrast to the “Yes” concert, the “Elton John” concert was 65° and a constant rain. It was the coldest I had ever been at a concert. Even under a canopy you still have to get from the car to the seats. I have rain ponchos but they are a pain to use. Fortunately the forecast for Friday was consistently saying only a small chance of showers. Initially they said the high would be 85° which would be not too bad but by the time the concert came, the forecast had gone to 88° or 89°. Much hotter weather was coming in the days following. At least the humidity was not too bad.

Peter Who?

The official billing for this concert said “The Steve Miller Band” and “Peter Frampton”. That indicated that Steve Miller was the main act and that Frampton was the opening act. I was really more interested in seeing Peter Frampton than I was Steve Miller. That sort of figured into my strategy for picking this concert. I had concluded that if I got too uncomfortable or tired or had breathing difficulty I could see Peter Frampton perform, leave early, and not be that disappointed about missing Steve Miller. But unless you are as old as I am, you may be asking yourself “Who the hell are these guys?” Some of the following is my own remembrances with a healthy assist on dates and times courtesy Wikipedia at the following link. https://en.wikipedia.org/wiki/Peter_Frampton

Peter Frampton is a British singer, songwriter, and guitar virtuoso born in 1950. He has a bluesy rock style and a mellow baritone voice. He uses a “talk box” guitar special effect that is one of his signature sounds. He was a bit of a musical prodigy teaching himself to play guitar at an early age. He later took classical music lessons. He attended the same high school as David Bowie where his father was a teacher. His father was David Bowie’s art teacher. Later in life he actually worked with Bowie on several projects. He played in a variety of small bands in his early teens and then at age 18, he joined with Steve Marriott of Small Faces to form Humble Pie. After four studio albums and one live album with Humble Pie he started a solo career in 1971 and released several albums none of which had much commercial success. His 1975 album “Frampton” was certified gold but only made number 32 on the US charts.

Whenever someone has a hit song and is never heard from again, they are described in the industry as “A One Hit Wonder”. Among my favorite such artists are Janice Ian and her 1975 single “At Seventeen” or Zager and Evans 1969 hit “In the Year 2525”. In some ways Peter Frampton is a “One Double Album Wonder” rather than a “One Song Wonder”.

In 1976 he released a double live album titled “Frampton Comes Alive!” and everything changed. For me that album title had a double meeting. It wasn’t just that he had recorded a live album… It was as if he was just born himself because prior to that, I had never heard of him and neither had many other people. It was like it was a debut album. I can’t begin to describe the impact of that album. I was in college at IUPUI and EVERYONE was talking about it. The entertainment writers in the school newspaper went nuts over it. It was a phenomenal megahit.

According to Wikipedia, in addition to the success of the album, three of the songs “Baby, I Love Your Way“, “Show Me the Way“, and an edited version of “Do You Feel Like We Do“, were hit singles. The latter two tracks also featured his use of the talk box guitar effect. The album was recorded in 1975, mainly at the Winterland Ballroom in San Francisco, California, where Humble Pie had previously enjoyed a good following. “Frampton Comes Alive!” was released in early January, debuting on the charts on 14 February at number 191. The album was on the Billboard 200 for 97 weeks, of which 55 were in the top 40, of which 10 were at the top. The album beat, among others, Fleetwood Mac‘s “Fleetwood Mac” to become the top selling album of 1976, and it was also the 14th best seller of 1977. With sales of eight million copies it became the biggest selling live album, although with others subsequently selling more it is now the fourth biggest. “Frampton Comes Alive!” has been certified as eight times platinum. The success of “Frampton Comes Alive!” put him on the cover of Rolling Stone, in a famous shirtless photo by Francesco Scavullo. Frampton later said he regrets the photo because it changed his image as a credible artist into a teen idol. His baby face good looks and flowing shoulder length curly hair also contributed to that image.

That teen idol image was bolstered by his unfortunate participation in the cheesy musical fantasy comedy film “Sgt. Peppers Lonely Hearts Club Band” which featured Beatles music cobbled together into some sort of ridiculous story in which Frampton played Billy Shears and the Bee Gees played The Lonely Hearts Club Band. I read somewhere that the participants in the film were told that the Beatles had fully endorsed the project and Paul McCartney himself would appear at the end as Sgt. Pepper to song “Get Back” but it had all been a lie by producer Robert Stigwood to get people to sign on. Billy Preston who played piano on the original Beatles version of the song ended up singing the song instead. It also featured Steve Martin as “Dr. Maxwell Edison”, Arrowsmith as “Future Villain Band” and Alice Cooper as “The Sun King”. Check out the IMDb.com trivia page for the film for other interesting facts. It’s one of my favorite guilty pleasure terribly bad movies and was the first movie I ever bought on VHS tape when I first bought my VCR. I think I paid $10 for it in a bargain bin when VHS movies were typically selling for $40 in those days.

Although Frampton continued to record over the years, he has never really had anything close to the success of the live album. He did win a Grammy for his 2006 instrumental album “Fingerprints” (more on that later). But for the most part you only hear his old hit songs played on classic rock radio stations.

Today at age 68 he is bald, has gray hair, and although handsome he looks nothing like the baby face teen idol that he was at the height of his career. Fortunately his voice is still as smooth and mellow as it always was and his guitar skills are as sharp as ever.

https://www.facebook.com/PeterFrampton/

https://en.wikipedia.org/wiki/Peter_Frampton

Steve Who?

While I could tell you “Peter who” pretty much from my own memory except for some of the dates and details from Wikipedia, I would be much more likely to be among those who would ask “Who the hell is Steve Miller?”.

Just days before the concert I remarked to a friend “I’m not sure if I will know much of the music. Other than ‘Fly Like an Eagle’ I don’t know if I could name another song.” Going into the event, my feeling was almost like they were a one hit wonder as well. My friend said “You will recognize much more than that.” without explanation. So just to warm up for the concert, I went online and downloaded “The Steve Miller Band Greatest Hits”. Much to my surprise I found myself saying repeatedly “Of course I know that song… I just didn’t remember it was Steve Miller Band.” Songs I instantly recognized upon seeing the list were “The Joker”, “Jet Airliner“, “Abracadabra”, “Jungle Love”, “Take the Money and Run”, “Rock’n Me”. Others such as “Dance Dance Dance” and “Wild Mountain Honey” although not immediately recognizable were familiar once I heard them again.

Other than listening to this Greatest Hits album one time through and playing a couple of the bigger hits a couple of times, that was all the preparation I needed for the Steve Miller Band portion of the show. Although I remember these songs as hits and I really enjoyed them, they really don’t have the personal significance or nostalgic connotations that Peter Frampton’s songs have for me. They are just fun classic rock songs that would be great to hear live.

The band was formed in 1968 and has sold 80 million records. Steve Miller was inducted Into the Rock ‘n’ Roll Hall Of Fame in 2016. More details on the group can be found on their Wikipedia page.

https://en.wikipedia.org/wiki/Steve_Miller_Band

https://www.facebook.com/stevemillerband/


Getting There Is Half the Fun

On a typical day I wake up about 8 AM and dad takes me off the ventilator. Using my laptop in bed I usually check Facebook, email, play some Candy Crush and maybe watch a little TV until 10 AM when my home health aide arrives to get me bathed, dressed, and up in the wheelchair. Although I wasn’t sure I would be able to sleep late, I asked her to come at 11 AM instead of 10 AM at least to give me one less hour sitting up in my chair and my back brace. I hoped that would extend my longevity. As it turned out I did not sleep in late but it was good to have that extra hour in bed anyway. I told my aide that I woke up humming the theme song from “The Muppet Show”. I was singing “It’s time to play the music. It’s time to light the lights. It’s time to get things started on the Steve Miller Band and Peter Frampton concert tonight“. She did her usual excellent job of getting me prepared and getting me comfortable. My back brace was quite comfortable that day although I did have a little bit of hip pain. I took some Tylenol at 4:30 when I did my dinner time G-tube feeding.

I tried to pace myself all day long and not do anything strenuous. I spent part of the afternoon using Google maps to try to find a good route to the Deer Creek Music Center in Noblesville. By the way I refuse to use their sponsor names. Initially it was just called Deer Creek Music Center but then the sponsors got involved. It wasn’t too bad when they were the Verizon Wireless Music Center. Then their sponsor was Klipch who makes speakers and headphones. I still don’t know how to pronounce that word. Now they are sponsored by Ruoff Mortgages which I am not sure how to pronounce either and I never heard of before. Of course I suppose the fact that I never heard of them is why they spend money getting their name on a venue.

I live on the northwest side of Indianapolis just north of Speedway. Deer Creek technically is in Noblesville in the far, far northeast side. The obvious route is to take I-465 around the north leg, get off on I-69 and there is an exit very near Deer Creek. But the traffic in that area especially during rush hour is horrendous. Deer Creek used to be out in the middle of nowhere but now is across the street from a major shopping mall and is surrounded by lots of other commercial development and apartment complexes. At one point the owners considered selling the place not because it was unprofitable to run an outdoor music venue but because the land values in that area had increased so much it was almost worth their while to sell it. I’m glad they did not sell it and close it down. It’s a great place to see a concert.

Google maps suggested we go across the center of town on 38th St. and then to Binford Boulevard which turns into I-69. Going through the center of town during rush hour didn’t sound like a good way to go. But I knew that the I-69 exit where you turn off to normally go to Deer Creek is very crowded plus all the traffic around the shopping mall. I scouted out an alternate route that would get us off of I-69 early at State Road 37. Then we could cut across at 126th St., 136th St. or 146th St and it would take us right to Bowden Road and to the back entrance of the venue. It’s a “VIP entrance” for people who have paid extra for premium parking but all you have to do is drive up and tell them you want handicap accessible parking and they let you right in. I had forgotten exactly where that parking was. The Google satellite map clearly showed it and you can see the traditional blue-and-white wheelchair logos painted into the parking places.

If you type in Deer Creek Music Center (or whatever they call it) into your GPS, it takes you to the main entrance. But I was able to label the location of the VIP entrance by typing in 14680 Bowden Rd. and marking it in my favorite places on Google maps. (Click to see)

The show was scheduled for 7:30 PM. Carol said she would be here at 5 PM and we planned to leave about 5:30 but she was here before that and we decided to leave a little bit after five. We made sure we had a print out of the tickets. We packed them in the bag with my suction machine which I would need if I had lung trouble. Carol had already called the venue to ask about the availability of a family restroom where we might go if I needed to work on my lungs. Fortunately my lungs were in good shape that day and we never did need to use the suction machine except to spit up some gunk one time.

On the way out, we drove by my church St. Gabriel which was having the first night of their annual festival. That’s another evening event that I used to attend from start to finish when I was in better health. I had been director of their poker tournaments for many years but the Festival committee decided a few years ago to cancel the poker tournaments (without asking me) and with my limited stamina I haven’t attended the festival in 2 years. But it was good to see that it was still a strong event. I had sent dad over earlier in the week to buy $100 worth of raffle tickets. (We didn’t win by the way).

Going north and then east on I-465 the traffic was not too bad but as we got further along it started slowing down considerably. I was watching our route on my iPhone using Google maps and the phone’s GPS. Normally your path is marked by a blue line. But when you get to a heavy traffic area the line turns yellow or even red. It even tells you how many minutes you’re going to lose on your ETA because of the bad traffic. Apparently it gets real time traffic updates which I had never seen before because I’d never used it in a heavy traffic area. It was very accurate compared to what we were experiencing.

Google Maps suggested we get off at US 31 and go north and then across 126th Street. We thought about getting off but it looked like once you got past 31 the traffic was moving again. There was a long line of stopped traffic at the 31 exit so we went on ahead. It turns out we should’ve followed Google’s advice. There was another big backlog at Allisonville Road. We waited our way through that and got off at 37 as I had planned. We then went up to 146 and across which was smooth sailing from there. I’m sure we skipped a lot of heavy traffic by taking my little shortcut but we might’ve done better to take Google’s advice and gotten off the highway sooner.

We easily got into the VIP handicap parking as expected. Although they are marked with the accessibility logo and there are plenty of available spaces, there are no extra spaces between the marked spaces to allow you to unload out of the side of the van. We were early enough that there were plenty of empty spaces and had no trouble unloading. Similarly on the way out no one was parked next to us. I don’t think that section ever did fill up.

One of the interesting features of that area is a facility I have never seen anywhere else and never had the opportunity to use. It’s a wheelchair accessible porta pot. It looks to be about double the size of a normal outdoor facility. It has a wide door and a tiny ramp. I’ve always thought it was great that they had one of these.

In times past when I was driving my wheelchair using my hand on a joystick, the long ride from the parking lot into the venue would’ve had me worn out and basically have been impossible. Carol would have had to drive the chair for me. The slightest bump or slope made it difficult for me to drive my wheelchair. But with my new wheelchair that I got just over two years ago, I operate it by joystick in front of my mouth. It’s actually much easier for me to use that system. I’m much more independent with the mouth control. My head sits solidly in the headrest. While riding in the car I also have a strap that holds my head into the headrest. While I don’t usually use it around the house, I decided to leave it on so it would be easier to drive over bumpy ground if necessary.

There is a small footbridge leading into the venue where you go up and down a pretty good hill. The courtyard is partially covered with cobblestones. Even the concrete and asphalt pavement areas have quite a few bumps and uneven expansion joints. Getting to the right side of the venue you also have to go up and down a pretty substantial hill as you cross over a tunnel where the equipment semis drive in to unload the concert equipment. I was able to drive the entire way by myself without any difficulty although I don’t think I could’ve done so without the head strap. Going down the hill and hitting a small bump would have throne my head forward and jammed the controls into my teeth. The strap prevented that as well .

The security screeners had no problem with my suction machine in the bag. They can’t really waive a metal detector wand over a mostly metal wheelchair so they generally just waive you through. I hope terrorists never figure that out. If they ever exploit that fact, they will never let anybody into a public event in a wheelchair again.

I was the first wheelchair to arrive in that section so it was no problem getting to the far left of the seating area where I wanted to be. I was surprised to feel that the pavement in the far left end of that section was sloping forward considerably. Fortunately I have a tilt feature of my wheelchair so I simply tilted my seat backwards a few degrees and I was sitting comfortably level. The rest of the handicap section seem to be level without any adjustment but I wanted that far left location for the best viewing angle. I had been in that section before many years ago but I don’t recall there being a slope. When Deer Creek first opened there was no accessible seating. You had to sit in the aisle on the main floor and of course when everyone stands up, you can’t see a thing. The new wheelchair sections added several years ago offer great views. There is a walkway in front of you where people are walking by constantly but it is not too disruptive. You can easily see over the rest of the crowd even when they are standing up. Here is a photo of the view we had as I posted it on Facebook

There was a very tall usher standing right in front of me as you can see in the photo. I had Carol go down and talk to him and asked him to step to one side once the show started because he was directly in my line of sight. He did so and I had no other problems seeing.

Carol also took a selfie of us and posted it on her Facebook page.

Technology Failure

Before continuing the story of the concert itself, I have to tell you about a piece of failed technology that sort of complicated things for me at the concert. I didn’t get as much use out of my iPhone as I had anticipated because of battery problems. Here are the details…

I have a bracket mounted on the left armrest of my wheelchair holding my iPhone, my Ultimate Remote Control 2.0, and a battery pack to power the whole thing. The Ultimate Remote has an IR transmitter for controlling TV, cable box etc. as well as giving me an alternative way to operate the mouse and keyboard on my PC. The device also has a built-in Bluetooth device that allows me to do iOS switch control on my iPhone. Basically I can operate my iPhone by pushing just three little buttons I hold in my right hand and not having to touch the screen.

The battery pack contains an Adafruit Power boost 1000 charger and a 4400 mAh Lithium-Ion battery. It’s a slightly modified version of a device I designed for the Adafruit Learning System called a “Printy Boost” because it has a 3D printed case. It provides continuous power to my remote and it tops up the charging on my iPhone if the iPhone battery starts to drain. For some reason this day it wasn’t keeping the iPhone 100% charged. I guess using the GPS and cellular data for the Google maps all the way across town was putting too much strain on the system. I don’t have a meter on my Printy Boost battery but the iPhone battery indicator said I was down to 60% by the time I got to the constant. I had Carol unplug and re-plug the USB connecting the phone to the backup battery. It began charging again.

Because there were no other wheelchairs in the section yet, I tried using an app on my phone to take a 360° panorama view of my seating area. I started up the app and began slowly turning my wheelchair in a tight circle. In the middle of doing that, my remote control started glitching and rebooting constantly. Apparently the battery did not have enough power to recharge the iPhone and to operate the remote control at the same time. Normally when the iPhone is up around 95%, the drain on the backup battery isn’t so much and it has no trouble operating the remote and topping up the phone at the same time. But at this low state, it was drawing too much recharge current and couldn’t keep up. I had to have Carol unplug the USB port and use the iPhone’s own battery and preserve my battery to operate the remote.

Later I disconnected the remote and shut off the phone just prior to the concert for about 15 or 20 minutes to save on charge. I also shut everything down between the two acts.

Jumping to the end of the story here, the iPhone completely died just seconds after The Steve Miller Band completed its most famous hit “Fly like an Eagle” which I was recording on the phone. I was just clicking to stop the recording when the phone died. I could have plugged it back into the battery but then I would not been able to use the remote to access the phone so it was completely useless. Fortunately that was the last song followed by an encore of two other songs and the evening was over.

On the way home I went ahead and plugged in the iPhone to the Printy Boost battery just to see if it would’ve charged. By the time we got home, the iPhone battery was about 70% charged, the backup battery was dead. I’ve got a whole shelf full of additional backup batteries at home. I’m never going to a place like this again without another backup fully charged waiting in my wheelchair bag just in case.

I plugged everything in overnight and the next day was anxious to see if that last recording of “Fly like an Eagle” had been saved or was lost. Unfortunately my Ultimate Remote wouldn’t work at all. It was giving me Bluetooth error messages. I ended up spending all of Saturday afternoon trying to un-brick the device. Operating it on low voltage had caused a major glitch. I tried refreshing my software that operates the box but that didn’t help. Then I discovered the infrared TV control portion quit working as well. It turns out that was because we knocked something loose trying to plug-in the USB cable to update the software. But that didn’t fix the Bluetooth. I had to do a separate refresh of the Bluetooth chip firmware. That required taking apart the box, installing a temporary jumper, going through several steps to reflash the firmware, and reassembling the box. It took me and dad all afternoon but we finally got it working. Of course when we reassembled the box, the screws holding it together were stripped and dad had to replace them with larger screws later that evening. While I had the thing plugged in to be reprogrammed, I made a couple of minor changes to the software I had been intending to make. The whole thing took most of Saturday just to get working and of course I had to do all of this without the benefit of the mouse control that the device provides. It’s not exactly how I planned to spend my Saturday afternoon. Anyway back to the concert…

Frampton Comes Alive… Again

Just prior to the start of the concert several of the radio personalities from WFBQ “Q-95” came out on stage to greet the crowd. They were sponsoring the event in celebration of 40 years of playing classic rock on the radio. Shortly thereafter Peter Frampton and the band came on stage.

My memory isn’t good enough to remember the setlist for the entire concert so I refreshed my recollection using a great website called setlist.fm which contains the list here. If you click on the song titles in the paragraphs below, it will take you to some YouTube videos of the songs. They are not my videos and they are probably in violation of copyright except for one or two that look official. However they have tens of thousands of hits on the video and have not been taken down as yet.

The show started promptly at 7:30 PM. The opening song was “Something’s Happening” which I immediately recognized as the opening track from “Frampton Comes Alive!” (Hereinafter abbreviated as FCA.) It’s a great song to start off a show. The chorus includes the lines…

“Alright somethin’s happening
Hold tight it might be lightning
Turn up the lights I feel like dancing”

In other words “It’s time to play the music. It’s time to light the lights…” The event I had been planning for months and had been hoping I could attend was finally underway. Frampton came alive again. I was there and I was a very happy camper.

The next song was “Lying” which was from his 1986 album “Premonition” which was his ninth studio album. I had never heard it before because I was unfamiliar with his later stuff but it was a good song completely consistent with his usual style.

The third song had a long guitar solo introduction that was unfamiliar to me but eventually resolved itself into the instantly familiar “Lines on My Face“. It’s a slow, bluesy number which was the 13th song from FCA. He started off with a long introductory guitar solo. I recorded about three minutes of it on my iPhone.

The fourth song continued with another FCA number with “Show Me the Way” which was one of his biggest hit singles. It included his famous voicebox guitar special effects and it really got the crowd going. I streamed a few minutes on it live on Facebook for my friends.

He then told the story of his album “Fingerprints” which was released in 2006. He said he went to the record studio and told them he wanted to do an all instrumental album. They thought he was crazy but they let him do it. He said “It was well received by people like my family members who each bought a copy. I think all total we maybe sold 7 copies. You can still buy a copy if you feel sorry for me”, he laughed. A couple of the people in the audience yelled out “I bought one” and he replied “Oh good… We were up to 9 now!” The audience roared. He went on to say that sometime later he got a couple of big envelopes in the mail announcing that he had been nominated for 2 Grammy awards. He thought it was a mistake but he went to the ceremony anyway. “Much to my surprise at the appropriate time they read my name as winning Album of the Year” then he added (as if someone in the band had prompted him) “Well Instrumental Album of the Year”. He talked more about the album and how he had invited other artists to perform with him on it.

The song he chose from the album was “Black Hole Sun” which is a cover of a song originally recorded by Soundgarden. He dedicated the song to Soundgarden songwriter and lead vocalist Chris Cornell who had taken his own life in 2017. It’s kind of a sad bluesy song and a great tribute to the late singer Cornell. The YouTube video I linked is probably one of the few legitimate videos I am linking. It is from a “Guitar Center” TV special on DirecTV posted by them.

By the way here’s an interesting YouTube video from one of my favorite channels called “12 Tone“. The guy who does the analysis draws little images as he’s narrating. He likes to draw little images of elephants for some reason but it’s an interesting animated way of describing his musical analysis. Check out the channel when you get a chance or specifically this video which analyzes Black Hole Sun. https://youtu.be/SOTRoZMAJ0s

Next on the list was a hard rocking number from FCA “I’ll Give You Money“. It’s not one of my favorite but I did recognize it from FCA and yet so upbeat after the slow blues numbers it was a good change of pace.

Between songs he told stories about how he wrote various songs. I don’t remember the details were when he told the stories between which songs. I do recall that two of his biggest hits were written when he went away to the Caribbean to write an album. He had three weeks to write it and spent the first two weeks partying with some other rockstar (I forget who) and he says he doesn’t remember much about those two weeks. But one of the songs he knocked out in one day during that third week was his hit number “Baby, I Love Your Way” which was next up on the setlist. The crowd sang along with him. It’s a very mellow easy flowing love song. I streamed about 2 minutes of it on Facebook for my friends.

He then told the story about an incident in 1980 when he was getting ready to tour Brazil. He thought he had lost all of his equipment in a cargo plane crash which tragically also killed three people. Among the losses were a treasured black Les Paul custom guitar that he was holding on the cover photo of “Frampton Comes Alive!” He had used it in his time with Humble Pie and throughout the early part of his solo career. He said then one day in 2011 he got an email with attached photos saying that the guitar had been found. It was returned to him. He said at the first performance after it had been returned, they put it on stage with a spotlight on it and it got a bigger round of applause then he did.

As he donned the guitar, I knew something big was coming so I quickly began recording on my iPhone. He shouted to the crowd “Are you ready?” And they replied with a loud “Yes”. He asked again louder “ARE YOU READY?” And they replied with a louder “YES!”

As I had hoped, the familiar opening guitar licks of “Do You Feel like We Do” radiated from the stage. It was my favorite cut from the original FCA album. The original version was the finale of that album and that version ran for over 14 minutes. It makes extensive use of the voicebox effects. It provides a brilliant exclamation point to the entire live album. It’s probably the track that I have played the most over the years. You can just feel the chemistry that he has with the audience in his live performance and for me it’s what makes the entire album so special. Literally for decades I have wondered what it would’ve been like to be there at that moment and hear that performance and feel the warmth and the excitement of such an amazing virtuoso performance. I wanted to know what it was like to “feel like you do” and now that long-held desire had become true for me.

In addition to brilliant guitar solos he also engages in musical battle with his keyboard player who is brilliant as well. There is back-and-forth interaction with the audience. The voicebox effects are brilliantly used. At one point he starts scatting into the voicebox and then says “I don’t know what I just said… mumbo-jumbo”. The audience went wild.

I took the opportunity while recording the song to turn around and pan the crowd because it interval part of the performance is the live audience. Unfortunately Carol missed part of it. About 10 minutes into it she let me know she was headed for the restroom. She return just as the song ended but she said that she could still hear all of it.

The entire extended performance lasted 18 minutes. That’s four minutes longer than the album version.

The online setlist says that the next song was “Four Day Creep” which is a song he did from his days with Humble Pie but was originally a blues song by Ida Cox. However the end of my recording of “Do You Feel like We Do” has the opening lines of “I Don’t Need No Doctor” which the online list says followed “Four Day Creep”. I think probably it was a medley of both songs. “I Don’t Need No Doctor” was also a big hit for Humble Pie but it was a cover originally recorded by Ray Charles. Whatever he played at the end in whatever order it was, it was just an afterthought compared to the amazing “Do You Feel…” number. There was no encore but really there was nothing else he could’ve done to add to what had just happened. The band left the stage at about 9 PM.

Intermission

I posted a note on Facebook saying that Frampton had done 18 minutes worth of “Do You Feel Like We Do” and that Steve Miller was up next. During the intermission I had Carol turn off the iPhone and unplug my control box. I had no way of knowing how much power was left in the battery for the control box but the iPhone was down to about 20%. If I was going to record or stream anything of Steve Miller it was going to have to be minimal.

Part of the strategy of this concert for me was the idea that if I was too tired to see the whole thing, all I really cared about was seeing Peter Frampton. If I had to leave and miss Steve Miller, I would be okay with that. As it turned out I was feeling good. The heat had been no problem at all. I kept drinking water and never was uncomfortable from the weather. There was a nice breeze blowing and overall it was a very pleasant evening. I spent most of the intermission just people watching.

The crowd was about 95% people in their 50s or older. The younger people there were obviously with a parent or who knows perhaps grandparent. Carol spotted one woman wearing an outlandish blouse that was barely containing her big breasts. She had a couple of younger people with her. Carol said “If I was there with my mom dressed like that, I wouldn’t want to be seen with her.” Other concerts I’ve been to in recent years with 70s or 80s groups like “Journey” or “Foreigner” have had more young people because those groups have continued to attract new audiences. These guys were definitely just for the nostalgic old folks like me.

During the intermission, the personalities from radio station Q-95 returned to the stage and gave away some free T-shirts celebrating their 40th anniversary. They also sent someone up into the lawn seating area and picked someone at random to come take a seat in the front row. That’s quite an upgrade. I paid over $100 for my seats and I guess that the front row is probably worth twice that. Seats in the lawn I think go for $20. They told the crowd that there were plans that Peter Frampton would be back on stage to play a couple of numbers with Steve Miller so the Frampton fans like me still had more to come.

The intermission lasted about a half an hour and Steve Miller took the stage about 9:30 PM.

The Space Cowboy Steve Miller

When the astronauts first landed on the moon in 1969, the very first thing that Neil Armstrong did after uttering his famous words about small steps was to reach down, pick up a rock, put it in a bag, and attach it to his suit. They called the “the contingency sample”. Each of the other astronauts who first set down on the moon did the same thing. The reason was “What if we spent billions of dollars to send a man to the moon, something happened shortly after he arrived, he had to get back into lunar module and leave immediately and would have nothing to show for it?” So the very first thing they did was grab a quick rock just so they could say that they didn’t come back empty-handed.

With my iPhone battery and my control box battery both running on fumes, I decided to record and share with Facebook friends about one minute of the opening song even though I didn’t recognize the song itself. It was my version of “the contingency sample”. Although I was completely satisfied by the Peter Frampton experience, I didn’t want to come away without any memories of the main act.

My knowledge of The Steve Miller Band repertoire is even more limited than my Peter Frampton knowledge so I’m relying heavily on this list from setlist.fm to fill in the gaps of my memory and basic knowledge. Again each song title below contains a link to a YouTube video of questionable copyright compliance. Details on particular numbers are also provided by the following Wikipedia articles on the band and Steve Miller himself.

https://en.wikipedia.org/wiki/Steve_Miller_Band

https://en.wikipedia.org/wiki/Steve_Miller_(musician)

It turns out that the opening song was a blues number called “The Stake” which was on the Greatest Hits Album that I had downloaded but originally appeared in their 1977 album “Book of Dreams“. You might recognize it more by the refrain “Nobody loves you like the way I do”.

The next number was also from 1977 “Book of Dreams” and “Greatest Hits” titled “Swingtown” again you might recognize and more from the opening line “Come on and dance, come on and dance…”. It’s a very upbeat pop song that was also released as a single in 1977.

The third song on the list was the first really big hit that I instantly recognized “Abracadabra” from the 1982 album of the same name. Since this was the first song I really recognized that they played I decided to record a little bit of it for myself… again as a bit of a contingency sample. Miller sounds exactly like he did on the original recordings. His voice sounds like that of a 25-year-old instead of a 74-year-old. He did hit a sour note occasionally or his voice cracked once or twice but 99% of the time it sounded exactly like every recording they ever did.

Miller dedicated the next song to US military serving around the world. “Living in the USA” was from their second album in 1968. At one point he explained that they had been recording and touring since 1968 thus making this their 50th year performing.

Next on the agenda was “Space Cowboy” from their third album 1969’s “Brave New World“. This is not to be confused with their hit song “The Joker” which begins with the lyrics “Some people call me the space cowboy.” I was completely unfamiliar with this song.

This was followed up with a much more familiar hit song “Take the Money and Run“. I figured it was worth the battery to capture two minutes of that with my iPhone for future memory. It sounded great.

As promised, they brought Peter Frampton back on stage for 2 numbers with Steve Miller. Miller explained that he admired Frampton’s guitar playing skills especially on blues numbers. They got to thinking about what they called the “Blues Triangle” of Memphis, Chicago, and Texas. They wanted to play some blues numbers representative of those areas. The first was a cover of a Freddie King song called “Same Old Blues“. Frampton did the lead vocals and Miller and the band accompanied him. It’s a very slow, mellow traditional blues song. The YouTube video that I have linked when you click on that song title above was recorded just three days prior to my event at their concert in Evansville Indiana. By the way, if I get arrested for sharing 2 minutes of video live on Facebook with friends only, I’m taking a bunch of people like this down with me. 🙂 They shared an entire song publicly on YouTube.

The other song with Frampton was “Stranger Blues” originally recorded by blues legend Elmore James. It’s a much more upbeat blues number with a traditional blues sound to it. Miller had included it in his 1993 album “Wide River”. He did the lead vocals that night and Frampton accompanied. Even though I was unfamiliar with either song, they were great examples of classic blues and I enjoyed them a lot.

Next came a lively little country number called “Dance, Dance, Dance” from the 1976 album “Fly like an Eagle“.

Next up is “I Want to Make the World Turn Around” from their 1986 album “Living in the 20th Century“. I was completely unfamiliar with it.

Before playing the next song “Wild Mountain Honey“, Miller explained that it was from the early part of the 1960s which he described as the swinging 60s not that hippie 60s. But if there was ever a “hippie-like” song in his repertoire it would have to be this one. He told the story of the strange guitar he uses to play it. It has six control knobs instead of the usual three. It has three electric pickups shaped like lipstick tubes. And it has 19 strings. In addition to the usual six strings there is another section that is like a miniature harp. It has a purple fake alligator skin cover. The YouTube video linked in the song title is from a 2017 concert where he tells the same story. At our concert he did the same gimmick where he reflects the spotlight off the mirrored back of the guitar. Although I’m pretty sure he described the price of the guitar as $125 and other Internet sources have listed it as $125, this video says he paid $200 for it. The guitar is a combination electric guitar and electric sitar. It sounds like something George Harrison would’ve played during his Ravi Shankar period. Tell me it doesn’t sound like a hippie song.

Miller explained that at the start of their career they released five albums in 19 months! They ran out of titles so they just called the fifth album “Number 5“. They played a lively blues number from that album titled “Going to Mexico“.

Finally we had one of the major hits we had all been waiting to hear. The 13th song on the agenda was their 1973 hit “The Joker” from the album of the same name. I had to share this one on Facebook for a couple of minutes. It contains the famous line in the chorus “I’m a joker, a smoker, a midnight toker…”. Apparently someone about two or three rows behind me took that opportunity to light one up. A security guard walking by in front of me pointed his flashlight in their face and yelled at them repeatedly “Put it out”. You can hear the security guard in my video. I had expected to smell lots of smoke during the evening but I never did smell any. Carol said that she did. Of course the crowd went crazy over the song and I really enjoyed it too.

They followed this with a lively number “Serenade” from the 1976 album “Fly Like an Eagle”.

Speaking of which… “Fly Like an Eagle” was the next song. Somehow I anticipated that it was coming and managed to get a recording going on the iPhone missing only a couple of bars of the introduction. It was a phenomenal eight minute long version of their greatest hit song ever. It included a brilliant keyboard solo that I especially liked. The crowd was clapping and cheering throughout the entire song. Just as the song was ending and I was trying to click on the phone to stop the recording and everything went blank. My battery had died completely. I had no idea if that last song actually got recorded or was lost forever.

For a grand finale they immediately went into another major hit “Rock’n Me” from the 1976 album “Fly Like an Eagle”. They left the stage to thunderous applause and screams but returned quickly for an encore consisting of “Jungle Love” followed by “Jet Airliner” both from the 1977 album “Book of Dreams”.

During this final song they lowered down a giant disco ball from overhead at the center of the stage. Both Frampton’s and Miller’s shows were very short on special lighting effects. Neither of them had any pyrotechnics, lasers, or video screens. They did occasionally project a still image on the backdrop but this concert was more about music and not about fancy theatrical show.

The song was written in 1973 by Paul Pena but is recording was not released until 2000 because of a contract dispute. Steve Miller’s version is the only one most people know from the 1977 “Book of Dreams”. It’s a jumping rock ‘n’ roll song so it seemed really strange to have a disco ball suddenly appear during it. It did get everyone (including my sister Carol) up on their feet and dancing. She should be glad my battery had run down or I would’ve had video of that as well.

The Journey Home

The show ended and the lights came up. It was a little bit after 11 PM. I took one last drink of my bottled water. We put on my head strap and I drove out through the crowd. There’s always a big backup on the footbridge as everyone tries to leave at once but this time it wasn’t too bad. When we got to the car, no one was parked next to us so it was easy to load up. We didn’t spend too much time fighting the traffic to get out. Of course this wasn’t a big sellout so the crowd wasn’t that enormous.

Unfortunately they forced us to turn north on Bowden Road which was the opposite of where we wanted to go. With my iPhone battery exhausted we had to navigate our way around without the help of GPS or Google maps. Carol has all of that on her iPhone but she couldn’t operate it and drive at the same time. We turned east on 156th St. which is a dark two-lane road. We managed to zigzag South and East on other streets as soon as we could and ended up on 146th St. which is a four lane road. We then took the same route back home that we had taken going in. At that time of night of course there was no traffic.

On the way home we passed by St. Gabriel again just a few minutes after midnight. The festival was just shutting down for the night but there were still plenty of people there. When I got home I did a quick G-tube feeding and went to bed. I was in bed by about 12:30. Carol decided to stay the night rather than drive home late at night to Danville.

The next morning I discovered all the problems with my remote control box and as I explained earlier, I spent all day Saturday trying to recover it. When I finally got everything working, the first thing I did was try to see if my recording of “Fly Like an Eagle” had survived. Unfortunately I could not find it on the phone. I got on iCloud and began downloading the photos and videos on my computer. I only had the basic 5 GB free iCloud because I don’t use it much. After had downloaded everything and deleted it from the cloud and my phone, suddenly a new video appeared. It was the complete recording of the missing “Fly Like an Eagle”! Even if my iCloud account had been overflowing, I should have still been able to see the file on the iPhone directly but for some reason it did not appear until after I had cleaned out iCloud. My memories recorded from that evening are now complete.

It’s taken me over 2 days to research and write this blog. I titled it “Frampton Comes Alive Again, And so Did I” because it’s kind of a rebirth for me to be able to go to evening concerts like this the way like I used to. I missed a lot of good shows over the last couple of months. I had considered trying to get tickets for another show this summer. Steely Dan and The Doobie Brothers will be there this coming Sunday, June 24 but that’s too soon for me. I’m still recovering. Styx and Joan Jett will be here July 11 the day before my birthday but the weather will probably be very hot and I’ve seen Joan Jett just a few years ago. Foreigner will be here July 12 my birthday but I’ve also seen them a few years ago. Chicago and REO Speedwagon will be here in August but again the hot weather might be rough. I’m sure I will find something good to see. Perhaps something indoors will become available so I don’t have to worry about the weather. Also I can be home from Bankers Life Fieldhouse in a half hour rather than the hour trip to Deer Creek.

It did occur to me that by the time another good concert comes along that I might not be in as good of shape as I am now. If this turns out to be the last concert I ever attend, it certainly was a memorable one and would be adequately worthy to hold that distinction as my last.

Christmas Gifts — Holiday Hospital Part 8

This is the eighth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Big Surprise

In my previous installment I talked about going to a Christmas ceremony on December 23 but there were other things that happened that day that we ought to cover. I had a bit of a rough night so I tried to nap as much as I could in the morning. I spent some time finishing up the second installment of my blog about being in the ICU. Here was my early morning Facebook post. [12/23/2016 7:16 AM ]

I’m not sure whether it was by email or by a Facebook post that I got some amazing news. The FDA had approved a drug called Spinraza for the treatment of Spinal Muscular Atrophy which is the genetic neuromuscular disease that I have. SMA comes in about four different varieties. I have type 2 which is very early onset but only weakens you very gradually over your lifetime. Living into your 60s like I had was not unheard of but I was probably pushing the limits. However the more severe type 1 weakens the children very severely at birth and they are fortunate if they managed to live more than two years. In a clinical trial, this drug was so effective in not only stopping the disease may in many cases increasing the strength of patients, that they stopped giving the placebo to part of the participants. Given that this was a seriously fatal disease and they had already seen positive results, it would’ve been immoral to deny the treatment to the other participants.

Although the clinical trials only involved the extreme type 1 infants, the FDA had taken the unusual step of approving it for all varieties of SMA and all ages of patients. This was a treatment and not a really cure. Early results showed it to be effective in only about 40% of the patients. Later that number increased to around 50%. I had known for years that if they ever did come up with a treatment, it wasn’t what to do me any good. Over 60 years of the disease had done damage that cannot be reversed. For a variety of reasons I won’t go into here, I’ve not pursued the treatment. The major reason is that is unproven for older type 2 patients at highly unlikely to do me any good. The side effects of the treatment are not well known. It involves a spinal injection and with my severe scoliosis that would be either dangerous or impossible.

Still it was an amazing piece of news and a wonderful Christmas present. I put together the following blog item telling a long story about my relationship with SMA and a funny story about one of my former employers who was a geneticist who is a bit of an ass.

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

Christmas Eve

For Christmas Eve I expected it to be an uneventful day. Dad was going to come and we were going to watch the Colts game. I had told Carol not to bring her grandkids to the hospital to see me because I knew they would be bored and rowdy. I had decided to take it easy and not get into the wheelchair today. Here was my early morning Facebook post.
[12/24/2016 9:45 AM ]

Fortunately nobody listened to me when I said don’t come and don’t bring the kids. Carol showed up with her daughter Alaina and grandkids Leighton and Keeleigh. Carol brought me a Christmas present that I have asked for. It kind of started out as a joke but actually it turned out to be a good idea for present. I had said “What do you get a guy for Christmas who has a trach? Of course the answer is scarves!” She got me a Colts and a Pacers scarf. There was a promise eventually we would get one for the Indy Fuel hockey team which we did eventually get. Here’s the live Facebook video of their visit at 2:13 PM.

Alaina and her kids did not stay long because as I predicted, they got a little bit rowdy. To my surprise, before Carol and the kids left, Karen and her boy Cole showed up for a visit as well. Here is the Facebook live video from 3:14 PM

My nephew Cole is a huge Chicago Cubs fan. When the Cubs won the World Series I built a special electronic hat for him. It has a strip of NeoPixels across the brim as well as a group of pixels underneath a 3D printed “C” for Cubs in the front. It runs off of an Adafruit Feather 32u4 BLE with a LiPo battery. You can control the pattern of lights using an app on your phone or tablet. Dad had brought it and left it in the car just in case we happen to see them. Unfortunately I could not demonstrate it because we ran down the battery playing with it. Here’s a video demonstration that I gave several weeks earlier on the Adafruit “Show-And-Tell”. My segment starts at about 5:35 into the video.

It turned out that the Colts lost their game and were eliminated from the possibility of making the playoffs. I spent the rest of the day working on a blog post about my Christmas card. If I wasn’t going to be able to mail out the Christmas cards, at least I could write about it and share the image with everyone on Facebook. I took time out to call my friend Judy and wish her Merry Christmas. Here was my final Facebook post of the day.
[12/24/2016 8:12 PM ]

Christmas Day

Christmas morning I put the final touches on my blog about my Christmas card. Usually I make a CGI rendered image using POV-Ray rendering software but this year for a change I took one of my old CGI designs, 3D printed it, and took a photo of it. Here is a blog post from my graphics blog with the details.

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

I connected with my sister Carol via Skype and got to watch her kids and grandkids open Christmas presents that morning. I had hoped to do the same with Karen but we never were able to get together on that. I had a surprise visit from my friend Judy and from Fr. Paul. I had no idea they were coming so it was fun to spend time with them. I spent the rest of the day working on another installment of my blog about my time in the ICU. My only Facebook post other than the blog posts was the following note.
[12/25/2016 5:00 PM ]

In the end it was a much better Christmas than I expected it to be. I got to see all of the family that I usually see on Christmas plus visit from friends that I did not expect.

After Christmas

Because it was the holidays, they were still very shortstaffed. With Christmas falling on Sunday, people were considering Monday the holiday. Even the cafeteria downstairs was shut down. I was able to get up in my chair for over five hours. I got a visit from my friends Stu and Pat Byram which was fun.

While I was up in my chair, my throat got quite dry and my lungs got a bit congested. Dad was supposed to be learning how to do a trach suctioning but I had been doing so well that I didn’t really need one. He had done a couple of practices when there was nothing in my lungs to suck out. So when I got gunked up that day, Dad did his very first trach suctioning under “real world” circumstances where I really needed it. We did okay even though it maybe wasn’t the best one I ever had.

I had a talk with the nurse practitioner about taking me off some of the medication that they had put me on. I don’t recall what sort of extra meds I had been on but I didn’t really think I needed them anymore. We talked it over and she cleared it with the doctor and we cut me back to just my usual medication.

One of the meds I had been on for many years was Flomax which is supposed to help with prostate issues and to help you pee better. The warnings on that drug said do not crush it or chew it. It is a capsule that is only about half full of some sort of gritty powder. For months (perhaps years) I had been taking it by mouth and letting the capsule partially dissolve until I could smash it flat and swallow it. Many times the contents would come out into my mouth. Fortunately it did not taste bad so I had no trouble taking it by mouth. However under my new circumstances I wasn’t taking anything by mouth except plain water. So they had discontinued the Flomax and put me on something similar that was safe to grind up and put through the G-tube. With this exception everything else on my meds were back to normal. It turns out that substitute prostate medicine has continued to work well to this day. I’m not had a urinary infection in two years.

I managed to write another blog post about being in the ICU. I was really looking forward to Tuesday because that was the day that the respiratory therapist was going to bring in my new ventilator and to train my dad and Carol how to use it. Dad would then stay overnight Tuesday night to prove to everyone that he was capable of taking care of me. It was a ridiculous requirement but it was the only way they were going to let me out of the place. Theoretically I could be going home by Wednesday the 28th. Here are the two Facebook posts I made that day. [12/26/2016 6:58 AM ] [12/26/2016 6:14 PM ]

The Christmas We Deserve — Holiday Hospital Part 7

This is the seventh in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Chaplain Services

I just realized that I forgot to tell you about the hospital chaplain that I met I believe the first full day that I was at Seton Hospital. As I’m writing this blog, it is 16 months after the fact so naturally my memory of events isn’t exactly total recall. Much of what I’m writing comes from a combination of two sources: One was a file I created “calendar.doc” containing one or two lines of notes about what happened on that day. The other source is the series of Facebook posts that I’ve been linking. Somehow I forgot to put in the notes on Facebook that there were two chaplains that I encountered during my visit. Unfortunately I didn’t make any notes about their names and I can’t recall either of them.

The first guy showed up I think on my first full day. He looked to be about 40 years old and was a very outgoing and gregarious kind of guy. He was a tall handsome man with light brown hair and a permanent smile. For those of you reading this who know the Enneagram system of personality types, he was very definitely a type THREE. He sat down and we had a nice conversation.

I told him about my involvement in St. Gabriel Church and how I had a good prayer support system behind me. Somewhere along the way I mentioned that I had been an RCIA teacher for 30 years. A puzzled look went across his face. Then he admitted he didn’t know when I was talking about because he wasn’t Catholic. I don’t recall what particular denomination he was but I seem to recall that it was some sort of evangelical branch. It might’ve been Baptist but I’m not sure. I thought it was really bizarre that a Catholic institution would hire a Protestant chaplain. But given that there is a priest shortage, if you weren’t going to have a person who could deliver sacraments then any person of faith would be okay. Although it is a Catholic institution, the population of Catholic patients was probably on par with whatever the general population percentage is. So having a Protestant chaplain wasn’t totally crazy. Just surprising.

He had with him a large piece of paper perhaps 12” x 24” that was a kind of a poster that had a number of questions about my personal life. I seem to recall he had things like favorite food, favorite TV show, hobbies etc. The intention was that I fill it out and they would post it on the wall where the staff could read it and get to know me. I never did fill it out.

I seem to recall we shared a prayer and he would drop by from time to time checking on me. At one point I shared with him the story of my friends from Adafruit and makers community and how surprised and pleased I was with their support. I especially wanted to tell him the story of how Phil seemed inspired by the fact his well wishes had had a positive effect on my recovery. I described it to him as a well disguised bit of evangelization on my part. I wasn’t really out to convert Phil to Christianity. But the fact that I had opened the door to get him to consider some spirituality and its real-world effects I thought was an interesting story. The chaplain seemed to enjoy it.

At this point in the story we are at December 23. It was about this time that the primary chaplain went on vacation and he was replaced by another guy whose name I forget. He was kind of short and a bit rotund. Not quite as outgoing or gregarious as the other guy but still very nice. I do recall that he was Lutheran which is somewhat more Catholic-like then an evangelical. Lutheran theology takes the same nonliteral historical critical approach to Scripture and they celebrate sacraments such as communion.

This backup chaplain had been tasked with facilitating a ceremony to put the baby Jesus into the manger of the lobby of the hospital. There had been a sign posted saying that the ceremony would be at 5:30 p.m. on the 23rd. I made it a point to be up in my wheelchair to participate in the ceremony even though I really didn’t expect it to be a very uplifting or spiritual experience. It was just something to do in a place and a time when there was nothing to do but sit and wait.

A Charlie Brown Christmas

On December 9, 1965 CBS premiered in animated special titled “A Charlie Brown Christmas”. If you ask the average person the title of a show featuring the Peanuts characters that had to do with Christmas, they would probably tell you that the title was “Charlie Brown’s Christmas” thinking that it is the story of Charlie Brown and the Christmas that he had. In the actual title, the words Charlie Brown are not about the character himself. The subject is not Charlie Brown. The subject is Christmas. “A Charlie Brown Christmas” is describing the type of Christmas that it was. It’s similar to saying “A White Christmas” or “A Merry Christmas”. One of the keys to this distinction comes from a sentence that one of the characters delivers (I believe it was Lucy) when they say “Of all the Charlie Brown’s in the world… You are the Charlie Brownieist.”

Charlie Brown is Murphy’s Law incarnate. He is a sad little character for whom everything goes wrong. His kites always get eaten by the famous kite-eating tree. His baseball pitching is notoriously bad. Every time he tries to kick a football, Lucy pulls away at the last moment and he lands on his backside. The plot of the story is about his attempt to be the director of a Christmas play. In an attempt to set the proper mood, he concludes they need a Christmas tree. His choice of a scrawny, dried-up, twig of a tree initially only serves to be yet another defeat for him.

Somehow in the end, mostly as a result of his right-hand man Linus quoting Luke’s version of the nativity story, Charlie and his friends managed to discover “what Christmas is all about”. It is a cautionary tale about the commercialization of Christmas. But moreover the story is a subtle reminder to keep Christ in Christmas. In its own way it’s much more powerful than the cliché bumper sticker quote “Jesus is the reason for the season”.

Although Linus reading of the Lucan Nativity is the catalyst that “saves Christmas”. In the end really it is all of Charlie’s friends who saved the day. Linus says “It wasn’t such a bad little tree. All it needs is a little love”. The love of Charlie’s friends transforms not only the tree but Charlie himself and Christmas is saved.

I’ve always identified with Charlie Brown. There is a bit of physical resemblance. At age 10 I had a burr haircut and a round face. But beyond resemblance I felt the connection to him. It’s not that I saw myself as a perpetual loser. I think it was more that despite all of his failures he kept persisting. His never say die attitude was something I embraced in dealing with my disability. Just keep persisting despite all odds. And like everyone, I’ve known my share of failure and sadness.

Finding myself in a hospital at Christmas time solely for the reason that the bureaucracy would not authorize my ventilator in a timely matter could easily classify itself as “A Charlie Brown Christmas”. I was cut off from all of the traditions that are at their core of what makes Christmas special. In my childhood we would go to grandma Osterman’s on Christmas Eve. Have Christmas at home on Christmas morning. Go to grandma Young’s on Christmas afternoon. In recent years we would do Christmas Eve at our house with my sisters bringing their kids and grandkids and then spent Christmas day at Carol’s house with her grandkids. The usual traditions of food, lights, decorations, presents, music, home were going to be nothing but memories for this particular Christmas. Although I had not been to Midnight Mass in many years simply because it was too difficult for my stamina, apparently I was even going to be cut off from Catholicism this Christmas with nothing but a substitute Lutheran chaplain for spiritual direction and celebration. I had spent hours preparing my custom-designed Christmas cards and although they arrived from the printer just before I entered the hospital, they were not going to be mailed until after I got home. Dad had set up our little Christmas tree in the living room but because he was never home, he rarely turned it on.

So this was the atmosphere surrounding the placing of a statue of the baby Jesus into the manger of the Seton Hospital nativity scene. This was a Catholic ceremony for which I was totally unfamiliar that had been scheduled and planned by an evangelical preacher who went on vacation and left the job in the hands of a Lutheran chaplain who had little idea what he was doing there or why he was doing it.

We all gathered in the chapel at the appointed hour. There was me, I believe a nurse or two, another patient in a wheelchair, and I believe perhaps one family member (not my family). Dad who is not at all religious stood by outside the chapel with my iPhone. At my request he was ready to record the events as if they were going to be something special or memorable. The chaplain offered prayers. I seem to remember there was a Scripture reading of some kind. I believe he asked for volunteers to either read the prayer or Scripture and I did so with someone holding the page for me. We then made our way out into the lobby where he placed the small statue into the manger and then invited us to sing some Christmas carols. Dad missed part of it because he was unfamiliar with how to shoot video on an iPhone. Here is the video that he shot that day.

My comment at the end of the video that just got cut off as dad stopped recording was where I said “I don’t think any of us should quit our day jobs to become singers.” It drew a couple of chuckles from people.

It would be easy to look at this entire situation as a horrible tragedy. A pathetic attempt to squeeze some meaning out of Christmas under sad, depressing circumstances. But somehow in the spirit of Charlie Brown it was all okay. It was a determined if feeble attempt by all of us to not let our circumstances totally rob us of Christmas.

In 1975, Greg Lake of the famous rock group Emerson, Lake, and Palmer recorded a song titled “I Believe in Father Christmas”. He recorded it first as a solo single and later appeared in the ELP album “Works Volume 2” in 1977. Lake wrote the music and lyrics were by Peter Sinfield. The song reached number two on the UK singles chart in 1975 beaten out only by Queen’s “Bohemian Rhapsody”. In a YouTube video I found, Lake said it was one of his most requested songs whenever he performed whether it was Christmas season or not.

It has been included in many Christmas compilation albums which is strange to me because for the most part it is a very atheistic look at Christmas. Lake said he wrote the song as a protest to the commercialization of Christmas. Lyricist Sinfield however said that the words are about the loss of innocence and childhood belief.

As I understand the lyrics, it’s about someone who was tricked into believing the mythology of Christmas and Jesus as a young child and who eventually grew up to reject the whole thing as a fairytale. Yet somehow the message of Christmas, peace on earth goodwill towards men, while unfulfilled still resonates with the author. He wishes the listener have “A Hopeful Christmas” and despite his disillusionment over the religious aspects of the season, the title still indicates he believes in “Father Christmas”. In 1975 when the song was released it pretty much exactly describe my feelings about Christmas. It was a time when I had turned away from faith and to the church and considered myself decidedly agnostic if not completely atheist. It wasn’t until nearly a decade later that I returned to the church and we discovered my faith.

Whether I was in my agnostic period of time or now as a person with reawakened and rediscovered faith, I still like the song. Despite its rejection of the religious roots of Christmas the important part of the song for me has always been the final two lines.

Hallelujah Noel be it Heaven or Hell
The Christmas we get we deserve.

To me that says that whether you believe in Jesus or not, Christmas is so powerful that if you can’t manage to enjoy it then it’s your own damned fault. Anyone who is so cynical as to not enjoy Christmas gets what they deserve. That sentiment has always embodied my personal feelings about Christmas whether I was a believer or not.

That sentiment is how I could look at that pathetic ceremony under pitiful circumstances and still find the spirit of Christmas.

As you will see in the next blog or two, I was surrounded by family and friends and presents on Christmas Eve and Christmas Day. It wasn’t the usual Christmas but it was Christmas nevertheless.

Here are the complete lyrics of the song followed by some links related to it.

They said there’ll be snow at Christmas
They said there’ll be peace on Earth
But instead it just kept on raining
A veil of tears for the Virgin birth
I remember one Christmas morning
A winters light and a distant choir
And the peal of a bell and that Christmas tree smell
And their eyes full of tinsel and fire

They sold me a dream of Christmas
They sold me a Silent Night
They told me a fairy story
‘Till I believed in the Israelite
And I believed in Father Christmas
And I looked to the sky with excited eyes
‘Till I woke with a yawn in the first light of dawn
And I saw him and through his disguise

I wish you a hopeful Christmas
I wish you a brave New Year
All anguish pain and sadness
Leave your heart and let your road be clear
They said there’ll be snow at Christmas
They said there’ll be peace on Earth
Hallelujah, Noel, be it Heaven or Hell
The Christmas we get we deserve

Technical Support — Holiday Hospital Part 6

This is the sixth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

We are up to Wednesday, December 21. I had some hip pain overnight but took a pain pill and it seemed to help. Spent most of the morning resting after a restless night. I had a little bit of problem with my blood pressure being a little bit low and my heart rate a bit low. The low heart rate sets off an alarm that kept waking me up. I think it was something in the alarm that got reset when we took the heart rate monitor off of me when I would get up in the wheelchair. This continued to be a problem throughout the stay.

One of the ridiculous hoops that we had to jump through in order to get approved for a ventilator at home was that the equipment company had to inspect our house electrical system to make sure it was safe to use the ventilator. As explained in this Facebook post, I had already researched online the type of ventilator we were going to use and I knew it was no more powerful than the CPAP that I was already using. In addition the ventilator had two backup batteries so if the ventilator would fail, the battery backup would be way more than enough to get me through the night. Keep in mind that this ventilator really wasn’t a life critical issue for me. It was just to help me sleep better like a CPAP. But you can’t use a CPAP when you have a trach.

Dad did finally make connections with Home Health Depot and they came to the house at about 1:30 PM. So dad came to the hospital after that. I spent the day working on my blog and swapping some emails with my friend Judy talking to her about the events that I was blogging about. I made no plans to get out of bed since dad was going to be coming late. [12/21/2016 10:48 AM] [12/21/2016 12:46 PM ]

A Video Surprise

In an earlier blog post about my stay in the ICU I mentioned that my friends from Adafruit Industries had called the hospital to inquire about my progress. Adafruit manufactures and sells open source electronics and gadgets to makers like me. The post titled “Meet Your Maker” is mostly about wrestling with my own mortality. But it’s also a bit of a play on words because it talks about my involvement in the maker community and my curiosity as to whether I had made an impact on that community. At the end of the post I talked about the history of Adafruit and my history with them. I was really touched by how concerned their founders Limor Fried and Phil Torrone had been about my illness.

I use Adafruit parts to build my ultimate remote that I used to control my iPhone. I needed that gadget to communicate when I was on the ventilator and typing messages on my iPhone was my only means of communication. I had exchanged emails with Phil and Limor in the days since that phone call but I wanted the opportunity to speak directly to them. Wednesday nights were their regular night for the weekly “Show-and-Tell” video chat where people like me would login using their WebCam and show off their electronic projects, 3D printed gadgets, cosplay props and costumes or any other kind of maker project whether it involved the use of Adafruit products or not. Because I have a WebCam in my laptop and had pretty good use of the laptop from my bed, I decided I would drop by the Wednesday night program just to thank everybody for all of their well wishes and support.

I dropped Phil an email to tell him I was going to be at the “Show-and-Tell”. He sent me an email with a link to a video he had made. Each week they have a staff meeting at Adafruit that they call “State of the Fruit” in which they discuss how the company is doing, talk about goals, and they read support emails from satisfied customers. It’s sort of a weekly company pep rally. Phil told them about my illness and they made a brief 10 second private YouTube video in which they all said in unison “Get well soon Chris”. I couldn’t believe that they had done such a thing. I was very moved. Here is the brief video.

Even though I already linked my “Show-And-Tell” video in the previous blog post, I will copy it here again. My segment starts at about the four minute mark.

After the weekly show and tell, there is another program called Ask an Engineer and among the features of that program is a recap of what happened in the just concluded show and tell program. Although I did not watch the following Ask an Engineer live that night, I did go back a few days later to see what they had to say about my visit. During that segment there was a sentence from Phil that said something like “as we told you about last week…”. That was the first that I realized they had talked about me at the previous week’s Ask an Engineer. So here are some links to those videos. I’m still blown away by the support I got from them.

This is the Ask an Engineer from 12/14/2016 which was the first show after my email to Phil and his phone call to me. It is queued up to the 14:21 mark of the one hour program at the point where they start talking about me.

The segment is about two minutes long. At one point Lady Ada says “It’s never too late to tell the people you love how much you care about them.” And that was the entire point.

After I appeared on the show and tell from my hospital bed on 12/21/2016 this was what they had to say in the recap during the Ask an Engineer. He talks about me at this 15:30 mark.

Phil mentioned that they sent me a get well video. That was the 10 second video that I showed earlier.

Shortly after while of this occurred, I met up with a group called ATMakers.org that is dedicated to using maker skills to create open source assistive technology solutions like my ultimate remote. Adafruit has taken up that cause as one of their pet projects and have been very supportive of ATmakers.org and all of our efforts to build useful gadgets. Not everybody has the maker skills or equipment that my dad and I have to build gadgets for me. This group tries to connect high school and college engineering and science students with disabled people to work together and create custom solutions. It’s been a real honor to be a part of that effort and in some ways it grew out of my experiences during this illness.

We did pass our electrical inspection from Home Health Depot. Dad tried to pick their brains about how long the process was going to take and was there anything we can do to expedite it. With Christmas right around the corner I was worried it was going to slow things down even more. It turns out the guy doing the inspection really didn’t know anything. He was just there to do a job. As it turned out the Christmas holiday did continue to slow things down. I posted the following message to Facebook right before I went on Show and Tell and then after the show I posted that video to Facebook as well. [12/21/2016 7:07 PM ]

Coordinating Services

Thursday, December 22 I had a visit from Joyce Beavan my caseworker from CICOA. That stands for Central Indiana Council On Aging. They provide case management services that manage all of my Medicaid and coordinate my home health aide. She was able to meet with the case management person from Seton Hospital named Michelle. She made all sorts of promises about different kinds of nursing assistance she was going to be able to get for me once I went home.

One of the problems is that an ordinary CNA (Certified Nursing Assistant) like I had had for many years, was not allowed to do anything with my trach. That didn’t surprise me because when I had gotten my G-tube they similarly were not allowed to have anything to do with it. But what I didn’t know was that the CNA was not allowed to be alone with me now that I had the trach. If I needed a suction of my trach they weren’t allowed to do it and so I would be in big trouble if they were the only person available. This was going to be a real problem because typically dad would do his grocery shopping on Tuesday mornings while the aide was getting me dressed. Furthermore if he had doctor’s appointments he would also try to schedule them in the morning when the aide was here. As an alternative we would sometimes schedule the aide for extra hours if he had an afternoon appointment. Only a real nurse would now be permitted to do that. They assured me that there were lots of nursing services that were going to be available for me.

I was concerned that they were going to completely replace my CNA with a real nurse. We had had a lot of trouble finding someone to fill that spot and I didn’t want to have to start over again with somebody new. Also I really didn’t need an RN to get me bathed and dressed. We just needed someone to stay with me while dad was gone. I got reassurances that I can keep my CNA for morning bathing and dressing as long as my dad stayed home. The nursing would be in addition to that. Spoiler alert… Despite all of the promises and despite their best efforts, it still took us nearly 6 months to find a nurse.

The other little interesting incident that happened that morning was that one of the respiratory therapists tripped over my nurse call button wire and broke off my 3D printed adapter ring. My notes say that I sent a message to dad to bring superglue and/or anything else we might need to repair it. I don’t recall if I typed a message on the computer to alert him or if I gave him a phone call. But the bottom line is he brought the necessary equipment and we were able to repair the button. Here was my early morning Facebook post. [12/22/2016 9:38 AM ]

Taking a Tour

After taking Wednesday off and staying in bed, today I got up and was out of bed for about five hours. Carol came by and brought my great-nephew Leighton (her grandson). We went down to the cafeteria while dad ate lunch. Carol helped me shoot a live Facebook video where we took a tour of the cafeteria, the nativity scene in the lobby, and the chapel. Unfortunately when I wasn’t facing the iPhone you could not hear my narration. The nativity scene in the lobby did not have a baby Jesus in the manger. Apparently there is a Catholic tradition that I didn’t know about that you don’t put the baby in the manger until Christmas Eve. Because the chaplain was busy Christmas Eve, they scheduled the ceremony for the afternoon of the 23rd. The other bit of the video that you can’t hear me describing is that you can see our red van in the parking lot out the window of the lobby. Sometimes when I went downstairs I would just sit and stare at the van waiting for the day I can get back in it and go home. Here is the Facebook video we shot that day.

Left Hanging

In my previous blogs about St. Vincent ICU I recounted what I called “The First Incident” and “The Second Incident” in which I had some problems with nurses who were not too keen on respecting my wishes despite my protests. Both of those incidents were entirely tied to the fact that I was on the ventilator and could not talk. However here at Seton Hospital, I was only on the ventilator at night so I really didn’t have very many problems. But there was a couple of minor incidents most notably one with a respiratory therapist named Laverne.

I’ve already mentioned that every six hours they give me a breathing treatment with albuterol. In addition to that they changed the piece of gauze that fits around my trach twice a day and they change the strap every other day. During the breathing treatments, the hose is connected June the trach mask but they have to remove the talking valve so that the mist can get in your lungs easily. Usually they come in, start the treatment which takes 6 to 8 minutes, change the gauze and then put me back on my talking valve. But because they are very busy sometimes they start the treatment and then walk away and come back later. Normally that’s not a problem but to get the gauze changed they have to sit me up in the bed straighter so that my head can tilt back and they can get underneath my fat chin. This particular time while doing all of that she left me in a very uncomfortable position without my call button in my hand. I didn’t mind her leaving while the breathing treatment was going on but I didn’t want to be left in an uncomfortable position. She got distracted taking care of somebody who needed her more than me which was no problem. But she shouldn’t have left me in that position.

When I talked to her about it later she gave me a lot of grief over saying she couldn’t be at my beck and call. She had other patients to care for. I tried to explain that I realize that. Just don’t leave me hanging. Change the gauze with the valve still in, get me and a comfortable position, make sure I have my call button, then start the treatment and you can leave me all day. I think I finally got her to understand but it took a bit of a debate.

There was only one other real problem I had with one of the nurses who I called in the middle of the night while on the vent. Despite the fact that I had my instruction sheet laying there on my chest telling her how to communicate with me and she was reading the notes, she didn’t seem to be able to follow them. The top item on my instruction sheet was “How to communicate with me”. But for some reason she skipped over that part and started asking me questions that were clear at the bottom of the page about bed positioning etc. I don’t think English was her first language. She looked to be Korean or Chinese or some sort of Asian and spoke with an accent.

There was another time where one of the nurses thought I needed something from the respiratory therapist when I really didn’t. He got a little testy with me when I said I wanted off the vent. That wasn’t a priority at the moment and he was busy with other patients. Later when I did get off the vent, I had the opportunity to explain to him I wasn’t the one called him and I didn’t really need him but I thought getting off the vent would be the quickest way to explain all of that. After the explanation we were cool.

Overall the experience with the nurses and therapists at Seton was much less dramatic than what I had been through at the St. Vincent ICU.

Here was the last Facebook post of the day [12/22/2016 5:09 PM ]

A Dry Heat — Holiday Hospital Part 5

This is the fifth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Vertical at Last

We are now up to Monday, December 19, 2016. Things were relatively quiet around the hospital over the weekend but starting Monday things were much more active. The staffing levels were higher. Therapist were back on duty. Although we didn’t really need the people from physical therapy to assist getting me out of bed and into the wheelchair, they wanted to be involved in that activity. They would need to round up a lift seat for me to use. Rather than a regular Hoyer patient lift like I use at home with a pump handle that you have to pump up and down and it rolls around on the ground, they had a motorized hoisting device hanging from a track on the ceiling. It was best we had them help because we really didn’t know how to work the gadget yet. I had had an uneventful night and my lungs were in pretty good shape according to this Facebook post.
[12/19/2016 11:06 AM ]

We eventually rounded up someone from therapy and they got us a lift seat and managed to get me into the chair without incident. I took the opportunity to drive around the hallway up and down once or twice. I went across the hall to visit my neighbor. It was a guy who looked like he was about 60 or so and had had some sort of physical problem I forget what. He was awaiting the opportunity to be transferred to a rehab hospital and ended up being discharged the same day that I was about two weeks later. We then set up my laptop on the hospital tray and I figured out how to use the WebCam to do a ride video on Facebook. Here’s the video I posted.

In the background of this video you can see the motorized lift device hanging over my dad’s head.

That evening I was visited by my friend Judy Chapman. It was the first opportunity I had had to talk with her since I had been in the hospital. During her previous visits in the St. Vincent ICU I had still been on the ventilator and could not talk. I was able to tell her the complete story of all the events that had brought me this far. We talked about the text message I sent her the content of which became the title of that 14 part blog series “Pray That They Listen to the Man with No Voice”. I talked about the two incidents with nurses who treated me so badly because I couldn’t talk and defend my position and about the therapists who did take the time to pay attention to my wishes. It was wonderful to get caught up with her and tell her all the stories I had not been able to tell her up until now.

The only other item I have from my notes for that day was that I had constipation and had to take a suppository. The bedpan that they had at the hospital was very uncomfortable so I had dad bring my bedpan from home. It was one I found on Amazon that had a very wide lip around it. The standard bedpans these days have a sharp edge that digs into your hips and can be uncomfortable.

As Dry as Arrakis

On Tuesday the 20th, they did a big team meeting. It included the case manager Michelle, people from all of the therapy departments, the nurse practitioner, and even the chaplain. It’s a weekly ritual where they evaluate how you are doing, what your goals are, and address whatever concerns any of the team has about your care plan. We made the conclusion that I did not need physical therapy, or occupational therapy so I was officially “discharged” from their programs.

One of the issues we addressed was my concerns about humidity. After being up in my wheelchair for a couple of hours the day before, I had ended up with a little more congestion in my lungs because my lungs had dried out somewhat. At times I had a little difficulty with coughing spells while trying to talk to Judy that evening.

As I had mentioned in the second installment of this blog “A Busy First Day”, they had me wearing a device called a trach mask. It’s a clear plastic cup that fits over your trach and is held around your neck with an elastic strap. A hose connects it to a source of heated humidified oxygen running at up to 10 liters per minutes. I didn’t really need the extra oxygen but I was pretty sure I needed humidity. Normally when you are breathing through your nose or mouth, the air is warmed and humidified by the moisture in your sinuses or mouth before it enters your lungs. However when you are breathing through a trach, the air goes straight into your windpipe and doesn’t have the opportunity to be humidified. They made a big deal about how I needed to be on this humidity all the time. It was very noisy and most of the time I would turn it down from 10 to about six or so.

One of my growing concerns was what to do once all of this was over and I was trying to get my life back to “normal” again. I knew I wasn’t going to need to be on a ventilator all of the time. The talking valve meant that I had my voice back again. But I didn’t want to be tied down to some big piece of hose connected to a humidifier all of the time.

One of the alternatives is something called an HME attachment for your trach. The letters stand for Heat and Moisture Exchange. Sometimes it’s called an artificial nose. It is simply a cap that fits over your trach and it has a small piece of foam in it. As you exhale, it captures the humidity from your breath. Then when you inhale, the humidity goes back into your lungs. It kind of reminds me of the stillsuit technology worn by the Freemen on the desert planet Arrakis in the Frank Herbert sci-fi classic “Dune”. The problem is, it doesn’t work with a talking valve.

The Passy-Muir talking valve has a butterfly flap inside it. When you inhale, the “wings” collapse and allows you to breathe in through the trach. When you exhale, the wings flap apart closing the passage and instead of exhaling through the trach, the air goes out your windpipe and past your vocal cords allowing you to talk normally. So the HME device never gets your exhaled breath to collect the humidity to be recycled. You already know how I feel about not having the ability to speak so the HME was not a viable option either.

The only other alternative is what is called a “red cap”. It is a solid cap made out of red plastic that completely closes off your trach. Then you just breathe normally in it out your mouth or nose through your windpipe as if you had no trach at all. After discussing this option with the respiratory therapist I tried to get the doctor or nurse practitioner to write orders to allow me to try it out. I got in a somewhat nasty argument with a nurse practitioner named Joy. She tried to convince me that because my particular type of trach had an inflatable cuff that it was not meant to be used with a red cap device.

The problem is that if for some reason the inflatable cuff doesn’t get fully deflated or if somehow the cuff would malfunction and block your airway, you wouldn’t be able to breathe at all. Without the red cap device, if the cuff would fail and block your airway, you would still be able to breathe through the trach. Even with a talking valve it might be difficult but you wouldn’t suffocate. I suppose that’s one of the reasons they make it red is because it is a somewhat dangerous device. You don’t want to accidentally put one on a person who shouldn’t have one.

I tried to convince the nurse practitioner in a very heated debate that I did not want to be tied down to a humidifier. I practically begged her to let me at least tried the device and she pretty much refused. Later in the afternoon I did some online research about trachs and how the cuff works. I believe at one point they even brought in an anatomical model to show me how a cuffed trach works. There were also some online videos that explained it. The doctor was going to be making rounds that evening and I had planned to appeal to him for the use of the red cap but by then I was beginning to understand the real risks and so I gave up on that idea. So it was a very heated debate… but it was a dry heat 🙂

This Facebook post inarticulately tries to explain all of the above. There are some dictation typos and errors that make it almost unreadable in places. I guess I didn’t proofread very well. [12/20/2016 6:05 AM ] I also got up in the wheelchair again for the second day in a row and made the following live Facebook broadcast.

Skills Lab

At some point dad was going to have to learn a lot of new skills about how to take care of the trach. I was receiving an albuterol breathing treatment every 6 hours around the clock (even at night). They were changing the gauze pad around my trach twice a day and the strap around my neck every other day. I also periodically needed my trach suctioned out with a catheter to clear congestion. So the respiratory therapist started giving my dad training sessions on how to do that.

The most complicated part is to suction the trach. The catheter comes in a little kit with its own pair of sterile latex gloves. These are not the kind of traditional latex gloves they pull out-of-the-box when dealing with you in the hospital. These are carefully wrapped in a paper envelope and are 100% sterile. Of course my dad has very large hands and even though the gloves will stretch to any size, it’s very difficult for him to put them on. They insist that you only touched the gloves by the cuff. One of your hands is considered the “clean hand” and the other is your “dirty hand”. You aren’t allowed to touch anything but the catheter itself with your clean hand.

This day was just the first of several training sessions they gave my dad. It wasn’t until the last day when we were talking to one of the nurses and she admitted “You realize, when you get home you probably aren’t going to go through all of that. As long as you don’t touch the end of the catheter and you keep it clean going in, you don’t need to worry about gloves or clean hand/dirty hand issues.” Dad and I looked at each other like “Then why the fuck did we have to go through all of that here?” The catheter kits supplied by my DME provider don’t include the sterile gloves and we never use even nonsterile gloves except when actually changing the trach itself. Although it took a bit of attitude adjustment on my part, I eventually trained friends and family how to do a trach suction. But that’s another story.

Miscellaneous Events

Carol came to visit that evening and gave dad a break. I told her the whole story of my arguments over what to do about humidity. The other thing that happened was we finally got the call from Home Health Depot to set up an in-home visit. That was part of the lengthy process we needed to get approved for an in-home ventilator. They set up an appointment to come to the house at 1:30 the next afternoon. Dad waited around on them and did not come until later in the day on Wednesday. This Facebook post shares my thoughts on all of the stuff we had to go through to get certified for the ventilator. [12/20/2016 9:51 AM ]

While I normally would not confess to illegal activity in a public blog, I will admit here that I downloaded a bootleg copy of “Rogue One: A Star Wars Story”. I never missed seeing any of the Star Wars movies since the first one. Most of them I’ve seen in a theater multiple times and that doesn’t include dozens of viewings on cable or DVD. I always go with my friends Rich and Kathy Logan. We saw the first one together. We went back and saw it again a year later for a one year anniversary. And I’ve seen every other episode with them. But when they visited over the weekend I told them they needed to go ahead and see Rogue One without me even though it really hurt to admit I wasn’t going to get to see it in theaters. The copy I watched was a really bad camera copy with bad audio. Not the best way to see a big action-adventure movie. In my defense, I did eventually purchase a 3D Blu-ray and I watched it as well on cable that I paid for legitimately. Under the circumstances I don’t feel bad about indulging myself under these conditions. Wednesday would be a day of more legitimate online activities. We will cover that in the next installment.

An Uneventful Weekend — Holiday Hospital Part 4

This is the fourth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Recap

In December 2016 I spent nearly the entire month in the hospital with respiratory problems. I chronicled the first 10 days or so of St. Vincent Hospital ICU in a series of blog posts titled “Pray That They Listen to the Man with No Voice”. The remaining two weeks were spent in a different hospital called St. Vincent Seton Specialty Hospital where I stayed through Christmas. I’m calling this second series “Holiday Hospital”

I didn’t get around to starting to write about those additional two weeks until over six months later in July 2017. I wrote 2 installments in July and then a third one in September but never got back to it until now April 2018. Even though it was well after a year since these events occurred, I do have some notes about what happened each day and I will have links to Facebook posts and videos that I made at the time. Who knows if I will finish it this time or I will take another couple months off. But anyway here goes. The link at the top of this page takes you to a table of contents for this entire series. Note: anywhere you see the little Facebook icons it will link you to a Facebook message I wrote at that date and time.

An Uneventful Weekend

We are now up to Saturday, December 17. I had been having a lot of problems with congestion and one of the things they had been doing supposedly to help it was giving me some sort of medicated patch to wear. I forget the name of it but it was supposed to help with my congestion. We concluded that perhaps it was making the congestion too thick so we decided to discontinue it and see if that helped. It really did. My lungs were much better without the patch. [12/17/2016 6:50 AM ]

Dad brought in my electric razor and he shaved me for the first time since I had moved to this facility. I had shaved once before in the ICU so this was only the second shave in about 10 days. I had developed a rash on my neck from not shaving, being sweaty, and having a trach collar around my neck. They brought in a roll of medically treated cloth in a little box that looked like a wax paper roll. The cloth is white, stretchy and had a bit of a sheen to it almost like a silk cloth. It was treated with some sort of silver solution. It was designed to wick away your sweat from creases like around my fat neck. It really worked well to clear up the rash over the next day or two. I took home the leftover material when I checked out and I’ve used it once or twice since then. It’s really good stuff.

Typically dad was arriving late morning and staying till about dinnertime when he would go home before dark and Carol would come and visit me in the evening. It was always handy to have a family member there who could make sure that I was laying comfortably and had my call button in my hand. They could do things for me so I didn’t need to bother the nurses or aides. But there was supposed to be an ice storm coming in and Carol canceled her visit. That was okay. By now I was settled in to my environment a little better than I had been originally. I also told dad not to come on Sunday because the roads would be terrible. [12/17/2016 6:34 PM ]

Sunday the 18th was mostly an uneventful day for me. My lungs were in good shape when I woke up however I did have some hip pain so I took a pain pill. Lying in bed so much and trying to set up in bed without my back brace on was messing things up for me. Dad came to visit despite the nasty weather. Not much goes on in the hospital on the weekend. [12/18/2016 8:27 AM ]

I did not sleep very well the night before but I was able to catch a nap along the way. I watched the Colts win their game but unfortunately Tennessee also won which made our playoff hopes much diminished. Dad brought with him the latest 3D printed parts for my nurse call button and they worked really well. I posted a photo of them on Facebook. [12/18/2016 4:08 PM ] [12/18/2016 6:58 PM ]

I said it was uneventful for me but from a news standpoint it was an eventful day. I was saddened to hear of the passing of former Indianapolis Mayor William Hudnut. He was a great Mayor who did a lot of good things for the city especially negotiating the transfer of the Colts NFL team here from Baltimore. He continued the work of former mayor Richard Lugar in maintaining a Mayor’s Advisory Council on the Handicapped. I was honored by him to be awarded with “Indianapolis’ Outstanding Handicapped Citizen Award”. Here’s a photo I posted on Facebook remembering him. Behind the left to right is the mayor, my mom, my grandma Osterman, my Aunt Jody Roell, and my dad. [12/18/2016 10:59 AM ]

One of the nice things about having good Wi-Fi in the hospital and having my laptop was that I was able to catch up on some online streaming TV shows. I got on Netflix and finished up watching Luke Cage that day. I thought the whole series started off a little slow because as an old white guy I had trouble getting into the Harlem aspects of the story. But once it got deeper into his origin story and became more of a superhero story and not just an inner-city gangster story I ended up really liking it a lot. I didn’t have any problem with the black urban portions of the story. I just had trouble relating to it.

Having a Prophet for a Friend

This is the third in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Where did we leave off?

It’s been quite a while since my previous installment because I had a major computer crash that took a week or so to recover. Then I got distracted with other things. We are now up to Friday, December 16 which is the first weekend that I spent in Seton Specialty Hospital. I had a bit of a rough night the night before. Here was my early morning Facebook post at 8:17 a.m.

The plans for Friday were to try to get me sitting up in the wheelchair. Dad brought my wheelchair with him that morning because the physical therapist said I should be getting up. It turns out the therapists were pretty busy that day and they decided they couldn’t help. Dad didn’t really need much of any help getting me dressed and in the chair except that we didn’t have any experience operating their patient lift equipment. As it turned out since I had had a kind of rough night the night before I decided to just stay in bed and we would get me in the wheelchair on Monday when the therapists could help us. Here is another Facebook post from later in the day at 5:06 p.m.

My friends Rich and Kathy Logan were planning to come by to visit me that evening. I had Rich bring me a print out of my communication board because I had a quick update I wanted to get and I didn’t want to wait until dad came the next day. But before they came, I kept myself busy throughout the day working on a 3D printing project.

Remote 3D Printing

Although my specialized nurse call button was working okay at the new hospital, my hand holding that button wasn’t doing as well. At one point a few years ago I thought I had glued a metal ring on the side of it that I would stick my finger into that would help me hold that in the proper position. Somewhere along the way I lost the metal ring. It’s extremely difficult to get the button positioned exactly the way I needed it. Anytime someone moved me or had to take the button away and put it back it was always difficult to get it put back in exactly the right position. Rather than trying to have my dad come up with a new piece of metal to glue onto the side of the switch, it was going to be easier to design and 3D print a new piece.

My St. Vincent Call Button

I do all my 3D modeling in a program called Blender 3D. That program isn’t specifically designed for 3D printing. It’s used mostly for rendering and creating video games and doing photorealistic 3D models similar to what I create in POV-Ray. It’s free and open source and rather than learn one CAD program for rendering and another one for 3D printing I decided to just stick with Blender bback when I first got my 3D printer. So I downloaded a copy onto my laptop and begin designing a little ring that would fit on the side of the nurse call button. Once I had a prototype designed, I transferred it from my laptop to my desktop at home using Team Viewer file transfer features. I told dad when he got home that he should turn on the 3D printer. I would type messages to him on the screen of my desktop and I would initiate the 3D print. I have a WebCam pointed at the 3D printer so I could remotely monitor the progress of the print.

For many months I’ve had difficulty getting parts to reliably stick to the build plate. However just prior to going to the hospital I had installed a new Zebra Plate build plate on the printer that had been working wonderfully. It worked beautifully again when I was printing the part. I printed the part Friday night and dad brought it in Saturday morning. It turned out that I needed to put a little twist in the model so that the switch would be in the proper position. I actually printed 2 different versions at different angles but even the one with the greatest twist wasn’t quite enough. I printed a third version Saturday night and dad brought it in Sunday morning. The final version worked just fine. Here is a screen grab showing the part that I modeled in Blender 3D. It illustrates 2 different versions with a slightly different angle on the slot that fits onto the original switch.

Here are some photos of the final part attached to my nurse call button. The 3D printed part is in green plastic.


The use of a closed ring to put my finger through worked so well that when I got home I redesigned the way I use my pushbutton switches on my iPhone and my bedroom IR remote/alarm button. Prior to this, I had a 3D printed part that help to position the buttons my hand but they were just a couple notches to position my fingers. After my experience with the closed ring, I redid the part on my iPhone and remote switches to completely enclose one of the rings around my finger. I tried using 2 rings. I tried the ring around the index finger. But ultimately it works best with only one ring around my middle finger and just a notch for my index finger. Here are some photos that show the old and new versions of that switch. And some photos of it in use. A friend of mine from Facebook once described this as a Doctor Strange “sling ring”. It really made me mad when he said that. I wasn’t offended. I was mad that I didn’t think of the name first 🙂


Although this revised system worked fairly well throughout the rest of my stay at Seton, the way that the wire comes off of the switch would often get in the way of my wrist or my forearm. After I got home from the hospital I decided I would take the switch apart. And I would change the way the wire extends from the switch. I would redesign the ring. As I am writing this blog I’m also working on a new 3D printed part for the hospital call button. It will look more like the ones I use on my remote at home in that it will have a middle finger ring and a first finger notch. As I mentioned above, I could not hold both the call button and my remote buttons at the same time. Ultimately I hope to be able to resolve that problem as well for the next time I am in the hospital.

Having a Prophet for a Friend

That evening I was visited by my great friends Rich and Kathy Logan. I’ve known them since my college days and I was the best man at their wedding years ago. I took the opportunity to tell the story of everything that had happened while I was in St. Vincent’s Hospital getting the trach. They had visited me at St. Vincent but I was unable to talk during those visits so I had lots of stories to tell them. Basically they got a condensed version of my entire 14 part blog where I wrote about the St. Vincent stay.

When you lay around the hospital for days and you contemplate the friendships you have and legacy that you have built, you tend to think of things that had been left unsaid. While there really wasn’t anything significant unsaid between me and the Logans, there was one story I have been meaning to tell them for a long time and had not gotten around to it.

When I teach religion classes for the RCIA program at St. Gabriel, I teach a class about the Old Testament prophets. Normally you think of a prophet is a person who predicts the future. But that really isn’t the primary role of a prophet. Prophets are actually spokespersons for God. I described them as similar to the White House Press Secretary. Of course I used to use that example when we had decent people in that job. I would hate to equate a prophet of God with someone like Sean Spicer 🙂 Instead think of C.J.Cregg from The West Wing. But not only are prophets spokespersons for God, specifically their role is to call us back to God when we go astray. To remind us of our core principles when we tend to forget them ourselves. Typically a prophet says if you don’t shape up, things will go bad for you and if you do shape up things will go well for you. Whichever happens… their prophecy tends to come true.

As examples in my class I cite people like Abraham Lincoln whose Gettysburg address was a prophetic message that reminded us what we were fighting for in the Civil War. I also include people like JFK with his “Ask not what your country can do for you… Ask what you can do for your country”. Similarly prophets are dreamers. People who dream about what the world would be like if we would stick to our core principles. The primary example of course is Martin Luther King Jr. and his “I have a dream” address.

But I also give biblical examples of prophets who are personal friends. My favorite story is the story of Nathan who is a prophet to King David and who called him out when he killed one of his generals Uriah to cover up the fact that he was sleeping with Uriah’s wife Bathsheba. I tell the class sometimes our friends are prophets for us who call us back to be the best versions of ourselves. To be the people that they know we can be. To be the people who made them want to be our friends in the first place. I explained that true friends are the people who can lovingly look us in the eye and say “You fucked up but I love you anyway. Now get your god damn shit together.”

Of course I don’t use that kind of language teaching the class… But you get the point.

So I told Rich and Kathy that when I teach that part of the class, they are among the friends I think of who are my prophets and to whom occasionally I have been a prophet. I explained that what I cherish most about our friendship was our ability to lovingly point out when we were being a real dick about something. I also confessed to them that I had not always exercised my role as a prophet to them out of the purest of motives. Sometimes I had been a bit self-serving in my role as a prophet and that was something which I regretted.

It wasn’t exactly a deathbed confession and I made it clear that it wasn’t. But it was nice to take the opportunity to thank them for being prophets for me and to say that I haven’t always been the purest of prophet for them even though I tried to be.

There is a parable about a guy who goes to heaven and asked Jesus “What in your opinion was the worst sin that I ever confessed?” Jesus replied “Once you had confessed your sin, I didn’t remember it anymore. So I can’t answer that.” Like the true friends that they are, the Logan’s didn’t recall the incidents that I had recounted until I recounted them.

Scripture says “Faithful friends are life-saving medicine…” Sirach 6:16

I have no doubt that they and other faithful friends had been life-saving medicine for me.

A Busy First Day

This is the second in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

A Parade of Therapists

Thursday, December 15 was my first full day at Seton Specialty Hospital. I was visited by a long list of therapists. I’ve never had any physical or occupational therapy of any kind throughout my life. You may recall in my ICU story a very tense and scary visit from a group of physical therapists who attempted to evaluate me even though I couldn’t talk because I was on a ventilator. Fortunately that incident turned out okay because they respected my wishes not to be manipulated physically by them. This was unlike some of the nurses I encountered in the ICU.

Apparently therapy is big business in a long-term specialty hospital like this. The goal is to get people stronger, faster, better and that takes therapy. I was visited by a physical therapist, occupational therapist, a skin specialist who inspected me for bedsores, and a speech therapist who is there to evaluate my swallowing difficulties. We made plans with the physical therapist to try to get me up in my wheelchair as early as the next day. The skin nurses were as usual very impressed at the lack of any sort of skin sores or lesions. Throughout my entire two-week visit in this hospital I continued to have to argue to convince them that lying flat on my back and not turning on my side very much if at all was the best thing for the condition of my skin. Whenever they argued back at me I would invite them to look at my skin and ask them if my ideas about how to protect my skin were so bad, how come my skin looks so good. I had no trouble convincing the occupational therapists that I really didn’t need anything from them.

The speech therapist wasn’t there to work on my speech. Now that I was off the vent and had my voice back there was nothing wrong with that. But she was there to evaluate my swallowing difficulties. After my G-tube procedure in May 2016 I had continued to drink Coke and to take oral medication by mouth. But there was always a risk of aspirating something. She had me try swallowing ice chips and water and of course concluded my ability to swallow was awful. The conclusion was all of my medication would continue to be ground up, mixed with water, and put in to the G-tube. I don’t recall if it was at this point or another visit later on by the speech therapist that they discussed something called “Frazier Water Protocol”. It’s the idea that if you have difficulty swallowing and are at risk of aspirating fluid, that it’s not only okay to drink plain water but it’s a good idea. The theory is if you have good oral care and keep your mouth clean and you are drinking plain water, even if you would accidentally aspirate something it would just be plain water and would not be harmful. Or at least not as harmful as aspirating food or other kinds of liquid such as milk, soda etc.

Keeping a clean mouth is a big part of that. The nurses would swab my mouth with a sponge swab soaked in mouthwash a couple of times a day. Sometimes it was with a small brush that wasn’t really like a toothbrush but they did brush your teeth and mouth with it. The respiratory therapist would also do some sort of swabbing twice a day so I was actually getting mouth care four times a day.

Speaking of respiratory therapists, they would do a catheter suction of my trach as needed. They would give me albuterol breathing treatments every six hours around the clock (yes in the middle of the night). Additionally there is a piece of gauze with a slit in it that slides around my trach. That would get changed twice a day. The strap around my neck that holds in the trach would get changed every other day.

When I wasn’t on the ventilator (which was all day long) they would place a sort of cup-shaped clear plastic device over the opening of the trach that was held in place by a strap around my neck. It’s called the trach mask. It was connected by hose to a humidifier and about 6 litres per minute of oxygen. Normally when you breathe through your mouth or through your nose, the air is both heated and moisturized by your mouth or nasal passages. However when breathing through a trach, the air goes directly into your windpipe and into your lungs. So you need some way to get heat and humidity to keep your lungs from drying out. At times it was turned up to 10 liters which made it very noisy. If there was a low point in the hose, then condensation would collect and it would start making a terrible rattling noise. There was a bag in the circuit that you could tip the hose the right way and would dump the condensation into a collection bag. Most of the time just to cut down on the noise I would have people turn it down a little bit.

Among the other new people I met was a new case manager a woman named Michelle. It became apparent that any progress towards getting my ventilator at home were probably rolled back to the beginning. The transition between St. Vincent’s case manager and this new one did not go well. This entire process of getting the ventilator was predicted to take 2 weeks and I felt like we’ve wasted three or four days already.

Here is my only Facebook post for the 15th.

Sparse Amenities

The rooms in Seton Specialty Hospital are much smaller than those in the regular St. Vincent Hospital. Most of St. Vincent’s rooms were originally 2 bed rooms that had been converted into a single bed room. So they were quite spacious. The ICU rooms also have a good amount of space because often you have lots of IVs, ventilators etc. and they need room to work on you in critical situations. So this room felt quite cramped compared to what I had been used to.

The cable TV system had a good mix of basic cable channels such as ESPN, news channels, sci-fi etc. of course along with the local channels. It was an analog cable system unlike the digital IP-based system used in St. Vincent. Fortunately that meant there were no spurious pop-up messages interrupting my viewing. Of course it always takes a couple of days to figure out where your favorite channels are. The remote is only channel up and channel down so you can’t just jump to a particular channel. You have to scroll through all of them and invariably you always end up searching the wrong direction and having to go all the way around and back again to get what you want to see.

The shape of the room was really strange. There was sort of a little alcove off in one corner that had a window so you can see outdoors. But the alcove was so small you could hardly get a wheelchair in there. There was sort of a shelf table built into the wall and we kept my laptop and iPhone sitting there when I wasn’t using it. There was an electrical outlet nearby so I can keep everything charged up. There were two chairs in the room for visitors. One was a reclining chair for a patient to sit in when they were up and about and the other was just a regular chair. Somewhere along the way we lost the recliner. If I had multiple visitors we had to scrounge up an extra chair for them to sit in.

Telepresence

While in the ICU I had used mostly my iPhone for Internet access to things like Facebook and email as well as text messages occasionally. But now that I could talk again, we set up my laptop computer on the bed tray. I used my usual voice control software supplemented by my IR remote that helps with mouse control. It also gets me out of trouble whenever the voice control locks up which unfortunately is frequently. One of the problems with the IR remote is that I can’t use it and hold the nurse call button at the same time. That generally meant that I only used the laptop while dad was visiting and he could call the nurse for me if need be. The Wi-Fi here was apparently the same system used by regular St. Vincent because the special login screen was identical. I never had any trouble connecting to it and was able to watch streaming video just fine as well as to do some live streaming from my iPhone using the Wi-Fi.

One of the big challenges for me as the person addicted to TV is that while you’re in the hospital you risk having your DVR overflow. Bright House has a webpage that you are supposed to be able to login to access your DVR. You can’t watch what’s recorded but you can see what programs you have, what is scheduled, and you can access the program guide to schedule new programs. Unfortunately for some reason I couldn’t get it to work. I later discovered that there’s some sort of glitch that it doesn’t work when your DVR is above 90% full. I found an alternate way to access the DVR which I will describe in a minute. But once I got it cleaned out using this alternate method, suddenly the webpage access started working again.

We have 2 DVR’s in our house. One in the living room that records programs that dad watches alone or that he and I watch together. The other one is in my bedroom and it records stuff that I watch by myself. In my office which is about halfway between the living room and my bedroom, I have a TV that can connect to either DVR. We don’t really have traditional “whole house DVR”. I just sort of rigged things that way. There is a 15 foot HDMI cable that runs from the living room cable box into my office into an HDMI port. There’s also a coaxial cable that runs a longer distance from the office TV into my bedroom and connects to the bedroom DVR. By changing the input on that office TV I can switch between the two.

I also have web controlled TV remotes built on Arduino Yun IOT boards in the living room, office and my bedroom. I can call up a webpage from any device connected to my home Wi-Fi and have complete control of the TVs, cable boxes etc. You can’t access these web-based remote controls from outside my home Wi-Fi but I have a workaround for that. I used a remote access program called Team Viewer that lets me login to my home desktop in the office from anywhere else such as my laptop in the hospital. I then call up the TV remote webpages on my office computer remotely via Team Viewer and I can control both DVR’s and all three TVs.

So I had my dad take the WebCam off the top of my computer monitor and prop it up pointed at the office TV. I then logged in to the office computer using Team Viewer and looked at the office TV using the WebCam. I then used the browser-based TV remotes to switch back and forth between the living room DVR and bedroom DVR. I used the web-based remote in the living room and the bedroom to browse through the programs, erase a few of them to make room, and reschedule re-recording those programs later in the week. This is a process I do on a daily basis when I’m home. If I have a movie recorded and I’m running out of space, I do a search for when the movie is going to be on again later. I then schedule a re-recording and delete the copy I already have recorded. So this WebCam based, Team Viewer controlled access allowed me to do just that and it kept both of my DVR’s in reasonable shape. I did end up deleting a couple of programs that were not that important to me and that I could not re-record. Also there was a miscommunication with dad about managing the living room DVR and he deleted a couple of programs I would’ve liked to have kept. I tried using this method to watch a TV show that I had recorded but the quality of watching it over the WebCam and poor sound coming to the WebCam microphone made it not really worth the effort. As I will explain later, I used this remote login and WebCam access for other purposes as well.

Updated Users Manual

That first day I also took the opportunity to type up my handwritten “Users Manual Chris Young” that I had written while in the ICU. It was instructions on things like “Don’t touch my kneecaps because they dislocate easily”, “How I signal yes or no”, “How to use the message board for me to spell messages”, and “How to put the call button in my hand”. Additionally I made new versions of the keyboard chart that I have people point to so that I can spell out messages when I can’t use my iPhone and cannot talk while I’m on the ventilator at night. Eventually I made 2 charts: one of them I called the “Letter Board” and the other one I called the “Word Board”. The letter board was simply a traditional QWERTY keyboard layout with instructions on how to point at the rows and columns for me to type out messages. The word board had words and phrases that I would use frequently. It turns out that 95% of what I needed people to do while I was on the ventilator could be handled by the word board and the letter board which had been my only means of communication was now sort of a backup for special cases. Here are what the two communication boards look like. Note: you can click on the images for larger versions.


When I came up with my first draft of my instruction manual, I uploaded it along with the communications charts to my desktop at home using the file transfer features of Team Viewer. Dad would bring me the printed pages the next day. The document went through several revisions both the communication charts and the instruction manual. At one point I had a critical update I needed to make to one of the charts that I wanted to get right away. I don’t remember what it was I wanted to add but I didn’t want to wait for dad to bring it the next day. I knew that my friends Rich and Kathy Logan were coming to visit me and I asked Rich if he could print a copy and bring it with him. So I emailed it to him and he brought it when he visited.

I don’t really have early drafts of the documents but I’m going to include here the final version because that’s all I saved. There were a variety of updates over the first week or so of my stay at Seton Hospital. Here is the final draft of my users manual.

How to communicate with me.

Eyebrows up and down = YES   Mouth twitch left and right = NO
Winking one eye = “I’m okay”
Clicking sound with my tongue= Need to use message board.
If I shut my eyes tight it means I can’t see the message board the way you are holding it. It needs to be directly in front of me and a fairly high up. There are two kinds. One of them has words and the other letters. Hold up the word board and ask if I want it or the other one. See instructions on the boards.

What to do when I press my nurse call button…

  1. Ask me “did you call?” Unfortunately a couple of times I’ve accidentally hit the button in my sleep.
  2. Ask me “Do you need your mouth suctioned” This is the most likely thing I need
  3. Ask me “Do you need your trach suctioned” I’m talking about the built-in sucker of the vent tube
  4. If I you can’t read lips or figure out what I want then go to the message boards as explained above.

How to position me: DO NOT TOUCH MY KNEES.

My kneecaps dislocate easily. You can grab my legs above the knee, below the knee, behind knees but not on the knee caps. Leave knees apart while lying flat. Position knees side-by-side when rolling me. Grab hips and shoulders to roll. Be careful knees don’t hit the railing while rolling me.

My Special Call Button

I hold a special called button in my right hand. It is difficult to put in position so avoid moving my right hand unless necessary. Place rolled piece of foam under my wrist halfway between wrist and forearm. Insert index finger into green ring. The blue block on the side of the switch goes towards my palm. My thumb rests on top of the metal tab.

Keep covers away from my right hand so it doesn’t interfere with the button. Before leaving, ask me to test the button. I will push it if I can. If successful, reset the light and you can leave.

About the room

I like to be able to look out the door. Please leave the curtain open unless I’m getting naked. Do not shut the door unless you are in with me.

About the bed

I know patients are supposed to sit up however with my scoliosis I am much more comfortable lying flat. Sitting upright compresses my lungs and makes it MORE DIFFICULT to breathe. I do not roll on my side very much because I cannot operate the nurse call button reliably while on my side. (although new adaptation to call switch may help that.) I use the Yanker to clear saliva from mouth when you are in the room but I use the spit cup when no one is around so I don’t have to bother you constantly to suction my mouth.

In addition to typing up my instruction manual and working on my communication charts I also worked on a document I called “calendar.doc”. It is just a sentence or two about what went on each day. That would later help me to prepare these blog posts. Because I’d only been in the ICU about a week and I did have some iCloud notes and Facebook posts to refresh my memory, I was able to re-create what it happened that first week. But going forward this little cheat sheet of what I did each day was going to be quite valuable for putting together the blogs. And speaking of blogs… I began the first draft of the first installment of my blog series “Pray That They Listen to the Man with No Voice“.

It had been a very busy first full day.

My New Hospital Home

This is the first in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Prologue

In a previous 14 part blog series titled “Pray That They Listen to the Man with No Voice” I recounted my weeklong hospitalization in St. Vincent’s ICU with severe respiratory problems. The end result was I had to have a trach installed. After about a week, I was no longer sick enough to be in the ICU however I still needed to use a ventilator to sleep at night and St. Vincent’s rules are such that you cannot have a ventilator in a regular hospital room. So instead I had to be transferred to what is called a “long-term acute care hospital”. The facility of choice was St. Vincent Seton Specialty Hospital which is just a few blocks away from the regular St. Vincent Hospital.

That previous blog series, the events from December 1, 2016 through December 14 but I did not finish writing it until late March. I promise to pick up the story of my recovery at Seton Hospital “very soon”. But now it is mid-July and I’m just now getting around to it. This part of the story isn’t nearly as dramatic or traumatic as was the previous story. Still I feel a need to share it because some interesting things did happen along the way and I promised I would finish the story so I will. This series will pick up on December 14, 2016 and run through December 28 when I finally got home. As you can see I ended up spending Christmas in the hospital so let’s title this series “Holiday Hospital”.

Throughout this blog if you see this little Facebook logo it is a link to a Facebook post of mine that I posted at the time of the events I’m describing.

About Seton

Before we talk about everything I did and what happened at this new hospital I thought I would give you some background about it and the Saint that is its namesake.

St. Elizabeth Ann Seton was the first nativeborn American to be canonized as a Saint by the Roman Catholic Church. She founded a Catholic girl school in Emmitsburg Maryland and founded the first religious order of sisters in America called the Sisters of Charity. That religious order is connected to St. Vincent Hospital and so this auxiliary hospital which is part of the St. Vincent system bears her name. While most Sisters belonging to religious communities or founding religious communities are single women, Seton was married, had children and then widowed before she became Catholic and then eventually founded her religious order. Seton is her married name. You can read all about her on Wikipedia here. https://en.wikipedia.org/wiki/Elizabeth_Ann_Seton

As mentioned earlier this hospital is known as a “long-term acute care hospital” and according to the website specializes in the treatment of medically complex patients who require extended hospital stays often of 25 days or longer. I would end up staying there 2 weeks but many of the people had been there much longer. Is located at 8050 Township Line Rd. it’s a relatively small hospital just two stories and they told me at has about 75 beds. Here is their website https://www.stvincent.org/locations/hospitals/seton

I’m not sure exactly what all services they have there. I did pass by an x-ray room. They have a really big physical therapy department because lots of the patients are trying to regain strength either to go home or perhaps to a rehab hospital. Here is a YouTube video that is a tour of the facility.

Many years ago (2004?) after my mother had spent 19 days in a drug-induced coma while she was fighting sepsis after pancreas surgery, she transferred to Seton Hospital. However it was not located in a separate building at that time. It was just one floor of one wing at the regular St. Vincent Hospital. But they insisted it was bureaucratically actually a separate institution. I don’t know when they moved it from that section of regular St. Vincent into this particular building.

The regular St. Vincent Hospital is a teaching hospital so your first line of contact with the doctors is generally by a resident who is under the supervision of an attending or a group of attendings. Of course you also have lots of specialist doctors such as pulmonary, urology, G.I. and of course surgeons roaming around. At Seton as best I can tell there is one main doctor pretty much covering the entire facility. They bring in specialists as needed from the regular St. Vincent Hospital but on a regular basis I think there is only one guy on call. As a replacement for residents the instead have some nurse practitioners who are the front line medical people. All of the nurse practitioners I had while I was there were women. As explained in the video the nurse to patient ratio is about 1:4. In addition to the nurses they have patient care technicians who do things like take vital signs, bedpan duty, bathing duty etc. just like a regular hospital.

Also as explained in the video, there are no nurses stations per se. There is an area the end of the hall in the advanced care section where they monitor some monitors and there are desks and phones where I would often see the case management people working. But for the most part the nurses hang out in the hallways at desks built into niches in the walls and sit at computers. I’m not really sure what is on the computers however because a lot of the patient records are in three-ring notebooks. This is in contrast to regular St. Vincent which appears to be about 99% paperless in its record keeping. At St. Vincent there is a Dell PC in every single room and all of the activities are recorded directly into the computerized system. Apparently Seton is still a little bit old school (behind the times) by having traditional paper patient charts.

There is also a very active staff of respiratory therapy people roaming the halls all the time. At regular St. Vincent you would see respiratory therapists come and go as needed and they apparently had some sort of homebase somewhere in the hospital from which they worked but at Seton they seem to be hanging out in the hallways constantly. Just about everyone in the place had some sort of respiratory therapy needs even if it was just oxygen.

Like the regular hospital, the nurses basically work 12 hours shifts with the shift change occurring at 7 PM and 7 AM with a brief overlap to brief the next shift on what was going on. One brilliant bit of scheduling however is that the respiratory therapists have their shift change at 6 PM and 6 AM so you don’t have the entire staff turning over at once. That seemed like a really good idea that worked well for me on a number of occasions.

Another bit of interesting scheduling is that half of the patients would receive their bed baths in the morning back the dayshift and the other half would get bathed in the evening by the night shift. The entire time I was there I would get my bath in the evening. In most hospitals I would guess that only a fraction of the patients needed assistance with bathing but here everybody was in pretty bad shape and virtually everyone needed a bed bath every day. So I thought it was clever to split the duties between the two shifts.

Settling In

My biggest apprehension about moving to Seton Hospital was my concerns about my call button. If you read any of the other stories about my hospital stays you know that I have a little microswitch on the end of a long cord that is a specialty call button that I use in St. Vincent Hospital. It has a quarter-inch mono jack on the end sort of like the plug you would use on electric guitar. At St. Vincent it plugs into the wall and sets off an alarm that calls the nurse. Originally it just called the nurse but I think nowadays it’s actually wired into the bed alarm which detects when a non-ambulatory patient tries to get out of bed without assistance.

My St. Vincent Call Button

I’m guessing I first got the device perhaps 25 or 30 years ago when I was in St. Vincent for some reason or another. It was probably a diverticulitis attack although it might’ve been pneumonia I don’t recall. I was unable to use the regular nurse call button. The various specialty buttons they had available such as a squeeze ball or an elbow pad just wouldn’t work for me. Dad and I tried to wire in a microswitch but we couldn’t get it to work. I’ve used microswitches for a variety of purposes over the years. When we couldn’t get this to work, they sent someone down from the rehab engineering department and he put together this switch. He told us to take it home with us when we left and bring it back anytime we returned and so for three decades that’s what we’ve done. At one point they changed their system from a normally open switch to a normally closed switch so they had to rewire it for us. Dad replaced the cord at one point because the old one was too stiff. But otherwise it’s been that same system they built for us years ago. I’ve never been in any other hospital besides St. Vincent on 86th Street and I wasn’t really sure if that quarter-inch mono plug was some kind of standard or if it was something unique to that hospital.

When we got to Seton the plug in the wall for the nurse call was some sort of bizarre multi-pin connector that I had never seen before. However they brought in a box full of specialty call buttons like those I had tried and rejected at St. Vincent decades ago. They all had the quarter-inch mono plug and they also had an adapter that converted the multi-pin jack into the quarter-inch socket that we needed. For some reason it would not work when we plugged it into the wall but there was another place to plug in on the bed itself and that worked perfectly. I can’t begin to imagine how I would’ve gotten by had we not gotten this call button to work.

When I was at the ICU I had dad bring in my laptop computer for one day to see if I could use my IR remote and the on-screen keyboard on Windows 10 to type messages. I knew that it had a “switch control” feature where you could scan the keyboard and use a single pushbutton to select letters but I had never really tried to use it before. It turns out that compared to the switch control features of Apple iOS on my iPhone, Windows switch control is a piece of crap. Because I was on the ventilator almost the entire time that I was there, I couldn’t use the voice control so I was really better off forgoing the laptop and just using my iPhone. But now that I was going to be settling into a new place and could talk the entire time except for at night, I definitely wanted to get the laptop set up. Not only would it give me easier access to email, Facebook etc. I could also use Team Viewer to log into my PC at home and do lots of other things remotely which we will describe later on. So it was not only did I have my voice back, it was good to have my voice controlled computer back as well because that’s my normal way of operating a computer these days. This was the first Facebook post I made on the laptop after moving into Seton.

More G-tube Controversy

A day or so before I left the ICU we had an incident where my G-tube fell out. They asked me why it came out and my response was “I’m surprised it stayed in this long the way you people have been yanking on it and tripping over the tube”. You can read that story here. The end result however was that I got a new G-tube placed the morning that I left for Seton. When the nurses looked at it they were a bit confused because it looked like it wasn’t an ordinary G-tube.

There are actually three different kinds of tubes they can put in. A G-tube extends a short distance through your abdomen into your stomach and is used primarily for people like me who can’t swallow. However if you have digestive difficulties there is another kind of tube called a J-tube that extends several inches down into your small intestine. I had heard about J-tubes but was not aware that there was also a third kind that was a combination of the two. The tube actually has 2 tubes embedded in it. One empties into your stomach like a G-tube and the other goes down into your intestine like a J-tube. It has 2 ports depending on which tube you want to use. One of them you use for nutrition and the other for medication although at the moment I can’t recall which is which. I don’t understand the medical reasons why you would have a combo tube.

Anyway… One of the nurses looked at my new tube and concluded that it was a combo because it had 2 ports. My previous G-tube also had two ports. One was for doing a bolus feeding with a syringe which I normally do and the other was for connecting to a pump for continuous feeding like they did when I was in the ICU. This new version that had just been installed that morning had 2 ports and one was labeled “nutrition” and the other “medication”. We thought I was going to have to have it replaced yet again because it was the wrong kind. As it turned out this was actually a single normal G-tube with two ports just like my old one but it confused them because it was labeled that way. So I sort of dodged a bullet there by not needing to have the tube replaced again.

Because I didn’t arrive until the middle of the afternoon it really took me the rest of the day to get settled in. My notes don’t say what kind of night I had the first night so it must’ve been uneventful. My second day was much busier so we will leave that until the next installment we in which I saw more therapists that I had ever seen in my entire life.

The Transition

Fourteenth and the last in a series. Click here for an index of all of the articles in this series.

No More Cloud

In our previous installment I had an emotional meltdown over by inability to talk with the trach. I was facing a wide variety of issues that need to be resolved. Not being able to talk and to participate in the decisions was a real mess for me. When I finally got the talking valve late in the afternoon of December 12, I still had lots of issues to deal with but at least I could now actively participate in those decisions. It’s hard to say that there was any advantage to not being able to talk but the fact that we had to type everything on my iPhone into the Notes app did give me an archived record of everything that I had typed. All of the messages were saved in my iCloud account. Even though I deleted them, they remained in the “recently deleted” folder for 30 days. When I had realized what a resource those messages were for piecing together this blog, I restored all those recently deleted items into a folder called “formerly deleted” and I’ve used those messages to help piece together the story. Put that together with my Facebook posts and I had a pretty accurate blow-by-blow picture of what I had been through. Now that I was talking, there was no more permanent record in the cloud. It’s taken me so long to get to this point of writing the blog that it’s more than three months later so my memory is a little bit fuzzy on details.

Outstanding Issues

Even though I didn’t have the benefit of an iCloud archive, I did seem to have a lot of clouds hanging over me with all the issues that needed to be resolved. Once the valve was in and I could speak I could begin dealing with issues one by one. I suppose the biggest issue was if I was going to need a ventilator to replace my CPAP so that I could sleep. I had proven many times in recent years that I simply could not sleep without a CPAP. For example if there was a thunderstorm and our power was out overnight, I had a backup oxygen tank to replace my oxygen concentrator but I had no way to operate the CPAP without power. Despite my best efforts to sleep under those circumstances I could not do it at all.

On the morning of the 13th I got off of the ventilator and put in the talking valve. Sometime during that day I tried to take a nap without any mechanical assistance. Much to my surprise I was able to doze off for about a half-hour or 45 minutes without the ventilator or a CPAP. That was very surprising. However the experience did tell me that I wasn’t sleeping well enough to really sleep through the night. I explained that to the doctors and they all agreed that yes I did need a ventilator at night to replace the CPAP. They begin to understand that I have been using the CPAP not only to open my upper airway but to assist with keeping my lungs inflated. So then we had to go about the process of getting the ventilator for my home.

There was a woman who was my case manager. It was her job to get whatever I needed to get me home. As I mentioned previously however, the process of getting an in-home ventilator was theoretically going to take a full two weeks. At first I thought the delay was because it took that long to get some sort of Medicare or Medicaid approval. Actually that part was relatively easy. It was just logistics of finding the right durable medical equipment provider and jumping through a bunch of hoops necessary to get the equipment. Among the things they wanted to do was to inspect my house electrical system to see if it was sufficient to handle the equipment. It turns out this was a totally ridiculous requirement. The ventilator doesn’t require any special electrical capability. It probably uses no more current than an ordinary CPAP machine. The problem is that once you say the word “ventilator” it raises the image of someone who is dependent on the thing to stay alive. The image is of a person who will die within minutes if the ventilator fails. It turns out that this ventilator has a battery backup that is good for several hours so even if I was in a life critical situation, electrical failure wouldn’t be fatal. In my case I’m NOT in a life critical situation. In fact I’m less dependent upon the ventilator than I was on the CPAP. However none of that mattered. We still had to jump through all the hoops.

The case manager was initially talking about using a company called Apria Homecare which is one of the biggest equipment providers in the area. Years ago I had got my oxygen equipment from them but they were a little bit difficult to deal with and we ended up changing to a different company. I was willing to go with them despite my previous bad experience so I didn’t say anything against them. Then the case manager came back and said she was going to try a different company that was an independent small company run by a respiratory therapist. I forget the name of the company. I like that idea because I had recently changed to a different home health aide agency that was a relatively small organization. I had felt like I was getting more hands-on attention from a small group that I had with the larger company in the past. So the idea of a small operation for the ventilator provider was attractive to me. Unfortunately somewhere along the way she came back to tell me that we cannot use either of them because different durable medical equipment companies have contracts with Medicaid to cover certain geographic areas. It turns out that I had to use Home Health Depot because they had the Medicaid contract. But we didn’t find that out for a couple of days. That delayed the entire process even further.

The next issue to deal with was that I wasn’t sick enough to be in the ICU and I could not be transferred to a regular room because they don’t allow ventilators on regular medical floors of the hospital. So the alternative was to transfer me to a long-term critical care hospital also known as St. Vincent Seton Specialty Hospital named after St. Elizabeth Ann Seton. She was the founder of the Daughters of Charity of St. Vincent de Paul. They have founded a number of institutions including the St. Vincent Healthcare System. Seton Specialty Hospital was just a couple blocks away on Township Line Road. So we began making arrangements to have been transferred there. It would probably happen on Wednesday the 14th. I asked the doctors directly “If I had all the medical equipment that I needed at home, when do you think I would be medically ready to go home?” The doctor said perhaps two or three days. So that meant I was going to spend 9 or 10 days in this other hospital unnecessarily just because we could not get the logistics of getting me a ventilator at home.

And people wonder why healthcare is so expensive.

The final issue I needed to wrestle with was that I now had a urinary Foley catheter stuck in my stomach instead of a proper G-tube. I made it clear to anyone who would listen that I wanted this issue resolved. I came into the hospital with a proper G-tube that had the proper kind of valve on the end of it. I intended to leave there with the same kind of G-tube. I wanted someone experienced in replacing the tubes. If we had to go down to the radiology department to use x-ray assistance then that was okay with me. In fact I would prefer it. That’s how they’d put the tube in to begin with. We had tried 2 different sets of incompetent surgical residents who couldn’t seem to get a tube in properly. They finally agreed that on the morning of Wednesday the 14th they would take me to the radiology department and replace the Foley with a real G-tube.

Other Loose Ends

In addition to dealing with the case manager, I spent a fair amount of time with the young resident Dr. Heaven. She had really appreciated my emotional state when I was demanding the valve and was instrumental in getting everybody to agree to it. One of the questions I had for her was where was the medical student Brady who had sort of been my other go to guy when trying to resolve problems. She explained that he had taken a few days off to study for his residency exams and then would be taking exams. I was disappointed that I wasn’t going to get to see him again before I left for the other hospital. Fortunately I did reconnect with him later. After I got home, I got an email from him saying that he had found my blog. We swapped a couple of emails and became Facebook friends. He has been following this blog with great interest. By the way he passed his residency exams and was accepted into a residency program in a military hospital in California. He was really looking forward to it. He had been in the military previously.

Sometime on the 13th or the 14th before I left St. Vincent, I had my second conversation with the nursing supervisor about the way I had been treated and my wishes being disrespected while I was unable to speak. I had already recounted that story in previous installments but this is when that second conversation actually occurred.

The Most Interesting Doctor in the World

On the morning of the 14th they took me down to the radiology department to finally replace the Foley with a proper G-tube. They rolled me down to a waiting area that I was familiar with. This was my third trip to that particular department. The first was one time in 2006 when I was in for my intestinal problems. They had inserted a central line in my carotid artery. The other time was last May when I had the G-tube the first time. After a brief wait the doctor arrived. The instant I saw him I thought to myself “I bet the ladies around here are going absolutely nuts over this guy.” He looks like the kind of doctor that you would see on a medical TV show and could’ve easily replaced Patrick Dempsey on Grey’s Anatomy and be given the title “Dr. McDreamy”. He was Hispanic at about 5’10”. He had black hair and a short neatly trimmed black beard and mustache. It was so precisely shaped it almost looked like it had been cut out of black felt or velvet and been glued onto his face. He had on scrubs for pants but he was wearing a tight fitting “UA” brand athletic shirt made of some slick material with lots of tiny holes poked in it. His upper arms were massive it looked like he worked out in the gym eight hours a day or something. In some ways I thought of him like a 35-year-old version of the Dos Equis “World’s Most Interesting Man”.

I will fast-forward till after the procedure when I asked a couple of the nurses if he was really popular and if the nurses had a crush on him. They told me that they probably would have except that he already had a very hot looking wife and a couple of gorgeous young children. That didn’t surprise me at all. I jokingly described him to one of the nurses as “He’s hot enough to turn a straight man gay”. One of the nurses came back with “Or to turn a lesbian woman straight.” We all got a big laugh out of all that. Disclaimer: I don’t really think you can turn someone gay or straight. It’s not a choice. People are wired gay or straight. We were just making a joke about what a hunk this guy was.

Anyway he questioned me why I wanted the tube changed. I explained “Look there are two different kinds of tubes. There are Foley catheters for your bladder and there are G-tubes for your abdomen. They wouldn’t have invented two different kinds of tubes if they didn’t really have a difference to them. I’ve been using a G-tube with a valve on the end of it ever since May and it works out really well for me. The Foley just has a cap with no valve. The stupid surgical residents couldn’t get a regular G-tube put back in. I don’t know what they were doing wrong but it hurt like hell. You need to numb me up so it doesn’t hurt, use the x-ray as a guide, and put in the right kind of tube.” He said okay as if he appreciated the guy who knew what he wanted and wasn’t going to take no for an answer. They wheeled me into the procedure room which was also a very familiar place from my two previous experiences. A couple of shots of lidocaine took care of any pain and the tube was replaced in no time.

I thought that that was the end of it until someone got to looking at the tube and there was speculation that they had put the wrong kind in. A traditional G-tube goes a short distance into your stomach and is used for people like me who have swallowing difficulties. However if part of your problem is digestive, there is a different kind of tube called a J-tube that extends down into your intestine. There is also a combination G-tube and J-tube that is a two-in-one device. Because the valve on the end of this new tube had 2 ports on it, some of the people who looked at it thought that it was perhaps one of these combo tubes. We didn’t do anything about it at St. Vincent but the issue got raised later in the day when I was transferred to Seton. They thought perhaps the people at Seton were going to have to replace it again. As it turned out it was not a combo tube. It was just a regular G-tube with 2 ports. It did not need replacing again and the tube has worked flawlessly ever since then.

The rest of the afternoon was sort of a “hurry up and wait” situation. I was going to travel by ambulance from St. Vincent ICU to St. Vincent Seton Specially Hospital but we didn’t know exactly what time it would be. I was one of 2 patients who were going to make the same trip. Of course it always takes a lot of paperwork to discharge someone. Transferring them to a different hospital is no exception. And to have 2 patients from the same department making the same trip also kept the nurses very busy. Eventually it was my turn. They loaded me onto a gurney and wrapped me up in a bunch of blankets. The ambulance trip took only five minutes or so. Getting in and out took longer than that. My notes tell me that I posted on Facebook at 5:19 PM that I was settled in to room 207 of St. Vincent Seton Specially Hospital.

Final Thoughts

That essentially wraps up the story of “The Man with No Voice”. It was most definitely the most emotional and stressful hospital experience I’ve ever had. The repercussions of it will carry well into the rest of my life. However I think the story of my adventure at Seton is sufficiently different that it is a story unto itself. It’s not nearly as dramatic and there will not be as much detail to talk about. I will get to work on writing it very soon. The brief story is that I spent from the afternoon of December 14th until December 28 at Seton. It did take exactly 2 weeks to get the ventilator ready for me to go home. If not for the logistical nightmare, I could have been back home within a few days.

I still am amazed at how differently I was treated when I couldn’t talk. I’m still a bit haunted by the fact that there are many, many people who face these challenges every single day of their life. I struggled with it for a little more than a week and it nearly drove me nuts. I spoke of the surprising level of commitment and support from my friends in the maker community especially those at Adafruit Industries. One of the consequences of this experience was that I was recommitting myself to developing adaptive technology not just for myself but for other people. For example for months I had promised to write a tutorial about how to do switch control using an Adafruit Bluetooth device and an iOS device such as iPhone or iPad. One of the very first things I did once I had settled back in at home was to finish that tutorial. I’ve also connected with another group called ATmakers.org which is run by a man named Bill Brinko. His organization is working with high school STEM programs to encourage kids to use their science, technology, engineering, and math skills to assist disabled people with their assistive technology needs. I now have a very deep commitment to make sure that everything I know about assistive technology gets passed on to other people who can make use of it. The folks at Adafruit have also taken up assistive technology as one of their pet projects. They are working with me and Bill to develop new devices that will be of use to the AT community. Now that I have my voice back, I’m using as much of it as I can to give voices to others who have no voice.