In my previous installment I talked about the surprise level of support from my friends in the maker community especially the people from Adafruit industries. But I also had lots of expected support from local friends and family. Carol had been coming after work at least three or four days a week. Karen had come when she could. Judy had actually taken a few hours off work to visit me as I explained earlier.
We are now on Friday, December 9 and for the weekend people schedules were little bit easier and I had even more visitors. My friends Rich and Kathy Logan dropped in to visit Friday evening on their way home from work and they and my sister Carol were there when the people from Adafruit called. It was great to be able to share that moment with them. It was a little bit difficult because I couldn’t talk but a combination of typing messages on the iPhone and using the message board I was able to communicate a little bit.
I showed them my page of instructions on how to take care of me and of course Rich being a computer guy he appreciated the joke that it was a “User’s Manual for Chris Young”. He also recognized that the row and column scanning of the paper message board was reminiscent of my old software VersaScan that I had written for my late friend Christopher Lee. He said “isn’t this sort of a primitive VersaScan?” I replied “Yes it’s VersaScan version 0.0”.
It had been a very busy day for me. It started off with less than satisfying attempts to stay off of the ventilator because I needed lots of suction. I had back pain because I had strained my back trying to shave. We had the infamous “Second Incident” in which a hot nurse took me out of a comfortable position into an uncomfortable one against my will. And the phone call from the people at Adafruit along with visitors from friends had turned a bad day into a better one.
That night however the pain persisted. Normally when I get back pain from not wearing my back brace or from straining my back trying to sit up in the hospital bed I can get rid of the pain with a single dose of Tramadol. However the night of the 9th/morning of the 10th the Tramadol didn’t do the trick. Instead they gave me Fentanyl 50 mg every two hours. Unfortunately it only lasted about ninety minutes. I asked if they could give me 25 mg every hour to spread it out but they weren’t interested in that. Then later the morning of the 10th I went back to Tramadol and that helped a little bit. I ended up in a little bit of pain all day long but it wasn’t as bad as it had been the previous night.
Saturday morning the 10th I had more visitors. Judy dropped by on her way to work her other job as bookkeeper at St. Vincent Depaul parish in Shelbyville. Also Fr. Mike the pastor at St. Gabriel dropped by for a visit as well. I wanted to tell Judy the story about the phone call from Adafruit but it was taking too long to type and with both her and Fr. Mike there it was a bit difficult to carry on a slow conversation. I ended up telling her I would tell her a long story later.
Judy went ahead and went to work and now I had an opportunity to chat a little bit by iPhone message with Fr. Mike. I told him that I had been anointed and that it was a good experience. I took the opportunity to asking him a question about some things going on at St. Gabriel. There had been a notice in the bulletin that people were considering reopening St. Gabriel Elementary School.
From the time St. Gabriel opened in the early 1960s up until about six or seven years ago we had operated a preschool through eighth grade parochial elementary school. The financial strain on the parish had been pretty severe but it was an important ministry for much of our population. When the parish was young, the Catholic mindset was that it was absolutely essential that Catholic children attend Catholic school. But for most people it had become less of a priority. People realized it was not a mortal sin to send your kids to public school. The Sunday morning religious education programs often called “CCD programs” were considered an acceptable way for Catholic kids to get the religious portion of their education. The result was our population dwindled and the cost per student rose significantly. So a few years ago we merged our grade school with St. Michael’s grade school now the combined program is held at St. Michael’s facilities.
So when I heard we were considering having a grade school my initial reaction was “I thought we are ready had one. It’s called St. Michael’s and St. Gabriel Elementary School”. We still pay lots of money towards the operation of that school and it is designed to be for our students as much as St. Michael’s. Of course we share the overhead cost and with a larger population it’s easier to keep the cost per student down. Additionally we’ve been renting out our classrooms to an organization called The Excel Center. It is a program to help dropout adults earn their GED. The reduced costs of sharing our elementary program with St. Michael’s plus the income we earn from renting out our facilities to The Excel Center has finally put us on solid financial ground for the first time in decades.
So I asked Fr. Mike “are we losing the Excel center?” He explained that there had been interest in reopening a grade school of our own and if we did so we would have to discontinue renting to the Excel center. But for the time being it was all just preliminary talks about something that would not happen for years. He was disappointed to report that only two families showed up at the meeting to discuss the possibilities. Naturally he was going to need to see much more demand for this change before he would entertain it. He was going to schedule another meeting which did eventually happen but I never heard the results of it. In fact I’ve not heard any more talk of reopening the school.
It was kind of fun to just talk about parish news and politics and not have to make everything that I discussed be about my own personal health or situation. Just being able to get caught up on the latest news with Fr. Mike was a real relief even though I don’t really care that much about the topic. I’ve never been a fan of private schools and thought that school was a serious drain on our resources but I always respected and tolerated those who did think it was a priority.
At the end of our visit Fr. Mike said a prayer for me and I typed “Amen” on my iPhone.
St. Vincent Hospital has a really nice cable TV system with most of your traditional basic cable channels including a couple of ESPN and all the major cable news channels and your typical TNT, TBS, WGN, Discovery, History, SyFy Channel etc. I don’t believe it has some of the more obscure ones like BBC America but for most things it’s sufficient. It’s actually a very sophisticated video over IP cable system in that you aren’t really watching a traditional TV signal but you’re watching a computer screen that is streaming the channels. There is an extensive menu system allows you to watch educational videos about various hospital and health issues. I think there’s even a system you can play online games and there are a few movies on demand but nothing very current.
One of the annoying things about the system is that there are pop-up messages that occur at regular intervals. They want you to watch informational videos that warn you not to try to get out of bed to go to the bathroom without help in case you fall and other such issues. I’ve complained about these pop-up messages before and even wrote them a very nasty letter after a previous stay in the hospital. The problem is that the pop-up messages obscure the screen and you can’t get rid of them unless you push a button on the remote control. I really laid a guilt trip on them in the letter. I said it’s bad enough when I have to lay there in the hospital feeling terrible and helpless. That my only refuge was to watch TV and that would be interrupted by these messages that I could not get rid of because I couldn’t physically push the button on the remote to clear the message.
Perhaps they had listened to my complaints because I did notice a change in this visit. The messages were still as annoying as always but they would occasionally disappear on their own and when they were on the screen, they did not obscure the screen. Unfortunately they caused the screen to be distorted by squashing it vertically to make room for the message at the bottom. When the message would eventually disappear on its own, the screen would remain squashed. So it was still a big annoyance.
There was one very humorous aspect to this. Somewhere along the way I was watching TV and there was a trailer for the new Transformers movie. Of course the giant robots were shooting up the place and destroying buildings and people were running for their lives. Just as the trailer began to start, one of the pop-ups happened to appear on the screen. This is a photo that Carol took of that same pop-up that I managed to see a few days later. I was thinking of downloading that trailer from YouTube and editing the pop-up over it to show you what it was that I saw. But two months later it wasn’t as funny or as important to me as it was the day I had Carol take this photo for me. But just imagine this pop-up message appearing over a movie trailer where it looks like giant killer robots are about to bring about Armageddon.
The Calm Before the Storm
Because I had a rough night the night before with lots of pain, I did not attempt to get off of the ventilator at all on Saturday the 10th. I just wanted to take it easy and relax and spend time with my visitors. The next day, Sunday the 11th, was a much better day physically. I was able to get off of the ventilator for almost the whole day. I didn’t have any pain and slept well all night. I posted the following upbeat message to Facebook reporting that fact. This message was posted at 3:51 PM. However early that evening of the 11th things took a turn for the worst and began a big downhill slide in my morale. It was the beginning of the emotional crash that led me to send the text message that I spoke about at the very beginning of this series of blog posts. In less than 24 hours from that very upbeat and positive post at 3:51 PM on the 11th, until 3:36 PM on the 12th I had deteriorated into an emotional wreck and was asking for prayers by saying “Pray that they listen to the man with no voice.”
The story of that decline in our next installment.
This is going to be a very long blog entry about some moral support from a group of people that I hoped were concerned about me but I had no idea how deep their feelings for me went. It was a very pleasant surprise to get so much care and concern. Like many stories that I tell, this one requires a great deal of back story and context for you to really understand what happened the afternoon of December 9 when I emailed a friend and got an amazing response. So I apologize a bit for the length of this installment but I think you’ll find it interesting. To really appreciate what happened that afternoon and in the days that followed, you need to know this long story.
From time to time I’ve encountered a friend or relative who was perhaps 30-40 years old and was very upset because someone that they knew had passed away who was approximately the same age as them. In some ways it surprised me how hard it was for them. The death of any loved one, even someone in their 80s or 90s who has lived a full life, can be a difficult experience for us at any age. But usually by the time we are young adults we have lost a great grandparent, grandparent or great aunt or uncle and we come to terms with it. But it didn’t really occur to me how rare it was for people to have experienced the loss of a friend who was of a similar age. The reason it surprised me that people in their 30s or 40s would find it difficult to face the death of someone that age is because I have experienced the loss of peers at a much younger age.
As chronicled in my award-winning story “The Reunion“, I went to a special education school that was all handicapped kids from the time I was in kindergarten all the way through high school. In my teen years, I lost several friends to the effects of their disabilities. Terry Johnson was two years older than me. He was a straight “A” student whom I taught to play chess and who was beating me within a month. Six months after graduating high school he caught pneumonia and died. He never went to college. Never had a job. Never did anything with the great intellect that he had.
Dan Moran was an acquaintance from high school. We got in a nasty argument one day over something trivial. I planned on apologizing the next day but he got sick and never returned. Several weeks later we were told he had passed away.
Heidi Wolfe transferred into the handicapped school in junior high. I played chess with her as well but would regularly beat her. One of the teachers asked me to let her win a game. I protested vehemently that he didn’t know what he was asking me to do. Did he really expect me to take a dive and let a girl beat me? He said it would be a personal favor to him. I told him I would think about it. Heidi never returned for me to take that dive. I later learned she had had terminal cancer the entire time. These are just three of the most dramatic stories of people that I’ve lost at an early age.
When I was very young, the doctors had no idea what kind of disability I had. They had warned my parents I probably would not live very long. I was even rushed through some of the Catholic sacraments at an early age because they didn’t think I would make it into my teen years for example to receive the Sacrament of Confirmation. In some ways I’ve lived my whole life thinking I didn’t have very long to live. That’s why when I turned 60 a year and a half ago I had my sister Carol throw me a big birthday party to celebrate how wrong everybody was about how long I had to live. Here’s a YouTube video of the speech I gave at that party that expresses those feelings.
All of the above has taught me not to take anything for granted. Even if you don’t have fragile health like I have, or some of my grade school and high school friends had, life is short and you never know how long you really have. We live in a dangerous world of guns, violence, cancer, incurable diseases, and just plain dumb accidents. The lessons I’ve learned from these experiences are that you don’t ever miss an opportunity to tell the people that you love how you feel for them. Although I’ve not admitted it publicly until now, the speech that I gave at my 60th birthday party is what I would have said had I been able to speak at my own funeral. While I hope and pray that I continue to have many more years ahead of me, that speech at the birthday party was my insurance that I didn’t leave anything unsaid to those that mean the most to me.
I’ve known for many years that the highest probability was that I would die of pneumonia in the St. Vincent ICU someday. While I’ve had some very serious illnesses to the past, this particular set of circumstances probably had me closer to death than I’ve ever been. You can live without food for weeks, without water for days, but when you can’t breathe you only have minutes to live. The respiratory distress I experienced the night I went to the ER and the other bouts of distress I had in the days that followed were very scary an dangerous experiences.
As I thought about these things lying in the St. Vincent ICU the past few days I knew that I had left nothing unsaid to most of the important people in my life. I knew that I had their love and prayer support for my recovery. They were being kept updated by Facebook and email about my ongoing condition. I had asked Carol to send emails to people like my friend Roy Buzdor who is not on Facebook.
However there was an entire community of people that I associate with who did not know about my illness. I also found myself wondering what would happen if I simply disappeared from this circle of acquaintances and friends. Would they miss me? Would they mourn my loss? Although I had great affection for them I wasn’t really sure how they felt about me. I begin to feel there were some things left unsaid and I needed to take this opportunity to say them even though at this point I really felt like I was past the critical stage.
The people and talking about are the maker community. Makers are a group of people who like to tinker with electronics, 3D printing, building things from scratch, and sharing them with one another mostly as open source software and hardware design. For a variety of reasons I communicate with them via the Google Plus social media network rather than via Facebook. I had not had an opportunity to post anything to Google Plus about my illness. The circle of people I associate with there is pretty small and while I have some affection for the group there are really only two people with whom I feel a special fondness. They are Limor Fried and her husband Phil Torrone. The story of how I met them, developed a relationship with them, and their response to learning of my illness is a long but fascinating story that we will now explore.
Electronics and Me
As I’m writing this blog, today is the 39th anniversary of the famous Midwest blizzard of 1978. At the time I was working a full-time job as a computer programmer for the Indiana University Department of Medical Genetics. The entire city was shut down for three days so I spent the days at home reading computer magazines such as Byte and Creative Computing. I couldn’t resist anymore and I vowed that once the city thawed out I was going to buy my first personal computer.
In those days a PC wasn’t an off-the-shelf item. I don’t believe RadioShack has released its first computer yet. You probably could buy an Apple computer but they were relatively new. Most personal computers were built from kits by hobbyists. You would buy a chassis and motherboard with power supply and then you would purchase various circuit boards separately. Although it was sometimes possible to purchase an assembled circuit board, most of them were sold in the form of kits that you had to assemble yourself. You would get a premade predrilled circuit board and a plastic bag full of parts that you had to solder together yourself.
The chassis on my first computer was called a Cromemco Z-2. The box was an aluminum crate about the size of a small microwave oven. The power supply was a giant transformer about 6x6x6 inches. It had capacitors that were the size of a frozen orange juice can. This computer used a somewhat standard architecture called the S-100 bus. It was a backplane with a couple of dozen large sockets into which you would plug the various circuit boards. It had 100 wires in the bus. There was a processor board that contained a Z-80 microprocessor and the associated chips necessary to make it work. There was an I/O board that had serial and parallel ports and included a cassette tape interface. Initially this computer did not even have a floppy disk drive and hard drives for personal computers had not yet been invented. There was a ROM memory board with a PROM burner. There was a memory mapped video board that displayed 64 x 16 characters of text on a 12 inch black and white standard TV. Each memory board held a whopping 16 K of RAM. Initially I only had one such memory board but later expanded to three boards giving me 48K. Later I did add another board that was a floppy disk controller. Keep in mind these are kilobytes we are talking about, not gigabytes nor even megabytes. These photos of my first computer or after I had purchased a better monitor and a couple of floppy disk drives but the basic computer was the same.
Not only did I have to build the computer from a kit and try to get different parts from different suppliers to work together, there were no standard cables. You had to wire all of your cables yourself. There were standards for serial ports and parallel ports but you couldn’t always just buy a cable for most circumstances. You had to build them yourself.
Dad and I enjoyed building the computer and tinkering with all the electronics necessary to make it work. Dad also began tinkering with electronic kits from a company called Heathkit. At one point he purchased an electronics tutorial package that was supposed to teach you basic electronics. We did lots of other tinkering with electronics using 7400 series TTL ICs. We built little digital counters and different kinds of blinking things using 555 timers and LEDs. It was a lot of fun.
Eventually off-the-shelf computers became available and all that we head to do was a little adaptation and customization so that I could operate them. Soon the days of electronic tinkering faded into a fond memory.
Sometime in 2012, I began to read articles about a little microprocessor board called Arduino. Hobbyists known as “makers” were building all sorts of gadgets with these little computers. The Arduino Uno was about the size of a deck of cards and contained a chip that ran at 16 MHz which was four times as fast as my old ancient first computer based on a Z-80. It had 32K of flash program memory, 2K of RAM memory and 1K of EEPROM memory. In many respects it was as powerful or more powerful as that first behemoth computer the size of a microwave oven.
Arduino Uno Development Board
This little board also had about 20 I/O pins that you could connect to various devices such as sensors, tiny LCD screens, LEDs, servos and other gadgets. In April 2012 I finally decided to purchase a starter kit and began experimenting with the Arduino platform. I had heard that you could use one to build a custom TV remote and I thought that would be an interesting project. A Google search for a supplier of Arduino led me to Adafruit.com which is the website for Adafruit Industries. This initial purchase on April 24, 2012 at 4:15 PM led me on an amazing journey into this world of makers. It rekindled my fascination with building electronic gadgets that I had had back in the early days when I built my first PC. Working with makers and tinkering with Arduino has the same sort of feel as those days in the late 70s and early 80s when personal computers were pretty much the exclusive domain of hobbyists. I don’t think the term “makers” had been coined yet but the atmosphere today is the same as it was back then.
The Adafruit Story
It was either great fortune or divine providence that led me to Adafruit.com to make that first purchase. They are an amazing company unlike anything else in the world inside or outside the maker community. I would not be surprised if 10 or 20 years from now, the Adafruit story became a movie similar to films like “The Imitation Game” or “Hidden Figures” which chronicle the stories of famous scientists and engineers of the recent past.
Limor Fried who goes by the nickname “Lady Ada” was an electrical engineering graduate student at MIT. As a hobby, she would design little electronic projects and post tutorials on how to build them on a personal blog that she maintained. People would write her asking her where to get the parts to build such projects and they suggested that she begin selling kits so that people could easily build her designs. At first she resisted but eventually gave in and began selling kits out of her dorm room at MIT. In 2005 she started Adafruit Industries and began selling kits out of her apartment with her husband Phil Torrone.
Phil has a long list of maker credentials as well having founded the website http://hackaday.com/ and later went on to work for Make Magazine. Now his full-time job is working at Adafruit in support of his wife’s work. She affectionately refers to him as Mr. Lady Ada but I’ve always thought he deserved a nickname of his own.
Initially everything was run out of their apartment in New York City under the watchful eye of their pet cat MOSFET. (MOSFET stands for metal oxide semiconductor field effect transistor. A type of power transistor used for controlling motors and other high current devices). She would design projects and purchase parts in bulk. They would assemble kits and put them in plastic bags and Phil would ship perhaps 10 or 12 orders per day. They also had a laser cutter that they would use to cut circuit boards and etch them. They also made money on the side by custom engraving people’s laptops using the laser cutter. Rather than using a sophisticated pick-and-place assembly line and a wave soldering machine, they would place parts by hand and solder them in a hacked, temperature controlled, toaster oven.
Without any outside funding or without ever going into debt, this small enterprise grew into a multimillion dollar company. Lady Ada was the first female engineer ever to be featured on the cover of Wired magazine. In 2012 just as I was making my first purchase from them, Entrepreneur Magazine awarded her “Entrepreneur of the Year”. In 2016 she was invited to the White House for a special conference where she was named one of several “Champions of Change” for her work in the maker community.
Adafruit now occupies 50,000+ square foot of factory warehouse space in the heart of New York City in the Soho area and employees over 100 people. The old toaster oven has been retired and now they have several state-of-the-art production lines for building their devices. They are the official manufacturer of the Arduino platform in the US and their online catalog lists well over 2000 products each of which has been designed by or personally approved by Lady Ada.
If you are expecting these young entrepreneurs to go around in business suits and look like sophisticated engineers you would be sorely mistaken. Lady Ada dyes her hair bright pink and has various piercings. Phil is very much a goth type with long hair, a beard, and always dresses in black.
As if they were not busy enough managing this multimillion dollar enterprise, each week they host an online video chat using Google plus hangouts. They call it their weekly Show-and-Tell. Ordinary people, like me, can join the program and show off their projects. It might be electronic gadgets, 3D printed objects, wearable electronics, cosplay props, a tour of a local maker space, or vintage electronics like old RadioShack and Heathkit gadgets. Whatever you want to show off that you’ve built you are welcome to join and share.
Whether the participant is a trained engineer who designs and builds sophisticated music synthesizers or it’s a 12-year-old kid who learned how to program NeoPixel LEDs to make some blinking gadgets, they treat all of the participants as honored guests and offer praise and feedback for their work. Anytime you participate you can email firstname.lastname@example.org and they will send you a free sticker saying “As seen on show-and-tell” to proudly display on your project. I’ve appeared on the Show-and-Tell program over 20 times since December 2012.
Lady Ada says that her real goal is to teach electronics to people of all ages and all levels of experience. They have a tutorial section called https://learn.adafruit.com with over 1000 tutorials. She says “We are not an electronics supplier. We are an educational service with a really big gift shop.” Everything that they design for sale is completely open source. That means that if you wanted to, you could download the schematics, board layouts, and software for everything that is their original products and build it yourself from scratch without purchasing it from them. You will see no “patent pending” or patent numbers on anything they design and sell.
I’ve written several tutorials for them to share some of the work I’ve done mostly in the area of infrared remote controls. I also designed a cell phone booster battery project with a 3D printed case that I call “Printy Boost“. It’s a bit of a pun based on an early Adafruit project that did the same thing but was stored in a Mentos mint gum package. It was called a “Minty Boost“.
Lady Ada and Phil also host a one hour show after that “Show and Tell” called “Ask an Engineer” in which they talk about new products, news from the maker industry, the latest tutorials they published, a history of science and maker issues, and it’s all wrapped up with a Q&A session where you can ask technical questions of the engineer Lady Ada. In addition to these programs she also hosts live streaming video called “From the desk of Lady Ada” in which you get to follow her thought processes as she designs and tests new products. That particular program is streamed live from their apartment in the evenings and weekends.
How they are able to do all of that and still manage a big company is a mystery to me. Oh I’m sure they have middle-management people and finance people etc. handling some of the day-to-day operation but for the most part they are both very hands-on in the running of the business while maintaining this very public and personal connection to their customers.
They are extremely socially conscious people who treat their employees like real partners. They pay them good wages with good benefits. They paid them throughout the time off they had to take when hurricane Sandy shut down the business for several days. Not only is Martin Luther King day a paid holiday and they are encouraged to make it a day of service, employees are given up to three days paid leave per year for them to do volunteer work with any certified 501.c.3 charity.
A few months ago I got inspired to write a parody of the opening number from the musical Hamilton but my version was about “Lady Ada Limor Fried”. Like Hamilton she is a tireless worker who is a self-starter who has done amazing things. You can read my parody here.
Whenever I’ve appeared on the show and tell, they seemed especially fascinated with the idea that I am putting their products to use for really practical purposes. That something I always emphasize when I make a presentation. While the little toy trinkets and the blinking lights and the cosplay props are all fun and educational ways to spend one’s time, I always remind them that the gadgets that I build make my life better every day. The infrared remotes that I built give me access to every cable box, TV, DVR, VCR, and DVD player in my house. I would not be able to operate these devices without the gadgets I built from Adafruit parts.
I use my 3D printer not only to build silly little toy robots and action figures but I also used it to build the joystick mount that allows me to drive my new custom wheelchair. The fact that I’m using their products to solve real-world problems has not gone unnoticed. At the beginning of the Ask an Engineer program they always give a recap of the projects that were displayed on the previous Show-and-Tell earlier that evening. They’ve taken the time to make special note of some of my projects and praise them for the fact that they are very practical uses of the technology.
I’ve written a number of emails and spoken to them online to express my gratitude for all that they’ve done for the maker community in general and to me in particular. I remind them that the gadgets I built using their parts make my life better every day. But it occurred to me that this situation had been taken to a new level. My “Ultimate Remote” that I built from Adafruit parts that gives me access to my iPhone wasn’t just being used to post cute messages on Facebook or to crush candy or other trivial things. It was my major means of communication with doctors and nurses during what could have been critical medical times. This communication contributed to keeping me alive during a very serious illness.
I felt the need to thank them one last time. Even though I didn’t think at this point that I was dying, there was always the chance I could take a turn for the worst and I didn’t want to leave anything unsaid. Just a few days ago I thought I was on the mend and didn’t ask Fr. Paul to give me the sacrament of the sick. Two days later I was in surgery getting a tracheostomy. So even though I was doing much better, I knew that things could get worse again very quickly. So I dropped an email to Phil the afternoon of December 9 at 2:31 PM that read as follows…
To: Phil Torrone
Subject: I’m in the hospital
Hi Phil and Limor,
Chris Young here. I have pneumonia and I had to get a tracheotomy so for now I can’t talk. I am using this device built from Adfruit parts. http://tech.cyborg5.com/2016/01/20/the-ultimate-remote-control-and-why-i-built-it/ to type messages to doctors and nurses on my iPhone. I’ve told you before that Adafruit products make my life better every day but now they are helping to save my life. I’m hoping to recover but I’m in pretty bad shape. I want to tell you that you are both a great blessing to me. You have treated me like a friend and colleague rather than a customer. I will treasure this always. I’m not giving up because I still have projects to show and tutorials to write. While I had the chance, I just wanted to drop you a note to say thank you just in case I end up meeting my Maker 🙂
Again while I didn’t think I was at the moment on death’s door, I understood that there would had ups and downs and there was always the possibility I could take a turn for the worst. Also I thought it was a really good pun when talking to people who were “makers” about meeting your maker.
Within 2 minutes I had a reply…
our thoughts and best wishes are with you, the world is a better place because of you and you’ve been so special to us.
which hospital are you at? is there anything we can send you or do?
thank you for being a bring light in our lives no matter what and where this life takes us.
pt and limor
I wrote back and said simply “Your good wishes are all I need.” It was great to hear from them and I had said what I needed to say. I thought that was the end of it. Maybe I would send them an update now and then and I would have stories to tell next time I came to the weekly show and tell. Actually a few days before I got sick I had planned to attend a show and tell to talk about some modifications I had made to my 3D printer. Unfortunately that night there was a problem with the Google hang out infrastructure and the program had to be canceled. So at least I needed to show off that 3D printer modification as soon as I got back home.
The Phone Call
December 9th was a Friday. My sister Carol came to visit around 5 PM and dad went home for the day. My friends Rich and Kathy Logan also dropped by to visit. I will tell more about their visit later. While we were all talking (rather they were talking I was trying to communicate by yes and no and an occasional message typed on the iPhone) one of the nurses came in and said “We’ve got a phone call from someone inquiring about Chris. Of course we aren’t allowed to release any medical information but I told him he could talk to a family member. His name is Phil.” Carol, not knowing who it was, agreed to talk to him anyway. She picked up the phone in my room.
I could not believe that somehow he had tracked me down, figured out what hospital I was in, and made a phone call to see how I was doing. Carol talked to him for several minutes and he gave her his private phone number and she gave him her phone number so they could keep in touch if something happened to me. He explained to her who he was and that he had gotten email from me about being in the hospital. He heaped all sorts of praise on me about how wonderful I was and how much they appreciated everything I had done for the maker community. He went on to say that if there was anything I needed that I should just ask. He said “nothing is too big or too small to ask”.
Rich suggested it was a great opportunity to hit them up for some expensive gear. Maybe I needed a better 3D printer or a CNC machine 🙂 When you have the owner of a multimillion dollar company telling you that you have a blank check, you’ve got to cash that sucker in. I’ve told the story to other people and they all agreed I should hit them up for something big while I had their sympathy and concern.
The truth was I already had way more from them than I ever expected. I felt guilty that I had laid there in bed and wondered if I would be missed or how much I might be missed if I never returned. I felt guilty for wondering if I had created any kind of legacy for myself in the maker community. I know that lots of people make use of my infrared software libraries that I publish. Several people have thanked me for designing the Printy Boost. I’ve got some positive feedback from my show and tell presentations. And I’ve always felt affection from Lady Ada and Mr. Lady Ada (as Phil is often called). But I had no idea the depth of that affection and appreciation that they and the entire community had for me. You can buy 3D printers. You can’t buy that kind of support.
I wrote him back saying I couldn’t believe he had tracked me down and called the hospital. I said “I can’t believe that you called yesterday! I’m so flattered. You have a multimillion dollar company to run and don’t need to be worried about me.” I went on to say he can keep in touch with my progress by following me on Facebook. All of my posts are public so you don’t need to be on my friends list to read them. You do not even need to be on Facebook yourself. He asked if it was okay to share my stories with the team at Adafruit. I said sure… Just like my projects I’m open source.
A few days later, I sent him an email telling him the good news that I had the talking valve on my trach and could finally speak again. I said that that means I would not have to resort to “Maker Charades” on future show and tell visits. “Maker charades” is what they call it when someone joins the show and tell but their microphone is not working. They just hold up their project and point and gesture to show it off. I was glad I would not have to resort to that but it was good to know they already had a way to let people participate who could not talk. I concluded that email with the phrase “Anyway thanks for your support. I believe in prayer, well wishes, good vibes and all forms of spiritual support.”
That last sentence seem to have a big impact on him. Although that email and the “meet your maker” line from earlier revealed me to be a person of faith, it showed that I respect and appreciate the support of people who are not necessarily religious. And in the long run I sensed that Phil perhaps realized that there’s nonreligious well wishes and good vibes had had a positive effect on my recovery.
To jump ahead in the story a little bit, a couple of weeks later on December 21 while still in the hospital, I joined the Wednesday night show and tell just to say thanks to everyone for all of their support. I used the WebCam on my laptop to login. Here is that video. My segment starts at about the four minute mark…
I mentioned that 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 back 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.
Phil mentioned that they sent me a get well video. It was a private video they took during one of their company meetings that they have each week. It was just a whole gang saying “Get Well Chris!” And lasted just eight seconds but it was wonderful that they took the time to record that for me.
Again to skip ahead in the story, the following Wednesday 12/28/2016 was the day that I got home from the hospital and did not have time to stop by show and tell. As it turned out they took the day off for the holidays and there was no show and tell that night. The following week on 1/4/2017 I appeared on the show and tell from home. I got to show off my 3D printer modifications that I had intended to show off right before I got sick. My segment starts at about 3:15 minutes in.
I’ve already started designing a new version of my ultimate remote that will make it even easier to communicate if I lose my voice again. I’m also working on a tutorial for the Adafruit Learning System that talks about how to control an iPhone or iPad device using switch control and Bluetooth devices made from Adafruit parts. That way anyone else who wants to build a device like mine will be able to do so with complete instructions, schematics, and source code all given away for free as open source.
At least three or four times during my hospital stay various doctors and nurses would marvel at my little technological gadgets. They would say something like “You ought to patent this and make a bunch of money off of it.” Then I tell them that I publish my designs open source so that anybody can re-create what I do for nothing but the cost of the raw materials. They are always a little bit embarrassed that their first reaction was a greedy “You should make money off of this” and my response is so much more altruistic. The embarrassment on their faces is priceless.
From a secular point of view… The support of a community of friends, the knowledge that you are appreciated, and the realization that you have a mission to complete to share your knowledge with the world and that it will be appreciated… That goes a long way to boost morale and give one a will to live.
As I told Phil “I believe in prayer, well wishes, good vibes and all forms of spiritual support.” This entire story explains why that belief is well-founded.
We are now up to Friday, December 9th which turned out to be a but very busy and eventful day. It’s probably going to take me two or three blog entries to cover the events. The first thing on the agenda that morning when dad arrived was that we wanted to try to shave me. Unless I’m going somewhere public, I typically only shave every two or three days just because it’s a hassle. I had been in the hospital for six days and I really don’t remember how long it had been prior to that that I shaved. So I was getting very grungy.
Because my neck is so short it’s hard to get a razor under my chin. It’s even more difficult to do so when I’m lying in bed. With the help of a nurse, dad raised me up in bed and stuffed a pillow behind my back so that we could tilt my head backwards and he could shave me. Even though they had been giving me a bed bath every day they didn’t always wash around my neck very well. So the first thing we did was have the nurse thoroughly wash my neck and get around the trach tube carefully. We laid a wash cloth over the opening to my trach while dad shaved me with my electric razor. It was a very awkward position but we managed to get me shaved. It felt good to get all of that off of my face. I almost felt like a human being again.
Unfortunately in the process I’m pretty sure we did something to kink my back. Later that night I had pretty severe back pain. When I get that pain I’ve been taking a pain pill called Tramadol but when I tried it that night it was not enough. I ended up having to take Fentanyl which is a pretty strong narcotic.
The other bit of “cleaning up” that I got that day was a visit from the hospital chaplain priest. When Fr. Paul had visited me a few days earlier I had not asked him to give me the sacrament of Anointing of the Sick because I thought I was on the mend. But when it became obvious I was going to have trach surgery and I was still a long way from full recovery I had asked the chaplain to send the priest to give me the sacrament. This isn’t necessarily because I thought I was dying. You can get the sacrament anytime you are seriously ill. I don’t recall the name of the priest who came by but he gave me the anointing. I had pre-typed a message on my iPhone that was a sentence or two of confession. He read the confession but said don’t worry about it that an anointing is just as good as confession. I had heard that before but I thought I would go ahead and mention a few things that had been on my conscience. That’s one message that I completely deleted and did not recover on my iCloud archives. Afterwards I posted a message on Facebook saying “Just got anointed by the priest, let the healing begin!”
As I had done the day before, they tried taking the off of the ventilator and letting me just breathe normally through the trach. The day before I had been off for several hours and only needed to be suctioned perhaps twice. This day I was in much worse shape. After only 15 or 20 minutes off of the ventilator I needed to be suctioned with a catheter. I thought I was cleaned out but after another 15 or 20 minutes I needed it again. It was just too much of a hassle if I was going to need that much suctioning. I decided to give up and we called the respiratory therapist to put me back on the ventilator for the rest of the day. It was a very frustrating and disappointing day for trying to get clear of the vent.
Here We Go Again
Disclaimer: I’m going to be brutally honest in this next section about my thought processes. I’m likely to come across as an insensitive, misogynistic, male chauvinist pig. I don’t really think I’m any of those things. I love women. I respect women. I enjoy looking at attractive women. The hard facts are I’m a 61-year-old horny old guy. That doesn’t mean I only see women for their physical attributes. I don’t believe I objectify women. Any of my female friends who can say they’ve seen a hot looking guy walk by and they NEVER took an extra long look at him and wondered what a physical encounter with him might be like… then they might be able to sit in judgment of me. But all of you other ladies who have ever done any guy watching… don’t judge me.
I mentioned previously that when I need to suction the trach with a catheter it had to be done by an RN. One of the times that I needed to be suctioned that morning, my regular nurse who is familiar with me was not available so they rounded up someone else to do it. This nurse who I had never seen before was actually one of the hottest nurses I had seen since I’ve been there. She was very tall, athletic build, light brown hair with blonde streaks in it, probably 40 years old or so. I’m a bit embarrassed to say that if I had to describe her in one word it would be “MILF”. I know that’s a very misogynistic, chauvinistic label to apply to a woman but I mean it with a great deal of respect. I don’t think the term (at least as I apply it) objectifies women. It simply expresses that I found her to be a mature woman who was very attractive in a physical sense.
She did a competent job of suctioning my trach tube and then she looked at me and said “You are slumping down in the bed. We need to scoot you up higher.” The problem was I had just recently gotten comfortable in that position. I had already been twisted and turned in unusual ways to try to get me shaved earlier. My back was hurting unless I would sit just right. I definitely did not want to be moved.
The nurses are rightly concerned about pressure sores developing on my rear end. However in my experience some of the things they do to alleviate pressure actually cause me extra pressure. If they grab you under the arms and slide upwards to keep you from slumping, your natural tendency is to slip downwards again. But you’re butt naturally doesn’t want to slip on the sheets as your body is trying to slide down and forward. It creates a sheer force on the soft part of your buttocks and on your tailbone. That sheer force on your rear end risks more pressure sores rather than alleviating them. I do much better if I’m slumped a little bit even though I look strange in that position. Add to this the fact I have very severe scoliosis and I was in bed without my back brace. That makes me look even more slumped than I actually am.
When she suggested scooting me up in the bed I began giving my “No” signal indicating that I did not want to be moved. I was certain that she understood my signal because she argued back at me insisting that I needed to be moved. At one point my dad said to her “He’s saying ‘No'”. It was to no avail. With the assistance of one of the patient care techs they grabbed me under my arms and pulled me up higher in the bed.
They didn’t hurt me. But they moved me out of a very comfortable position into an uncomfortable position for no good reason and over my explicit objections.
In what I called “The First Incident” I was absolutely furious and a little bit scared. In this second incident I just felt frustration, disappointment, and a sad feeling that it had happened again. When something happens one time you can write it off as an isolated incident. But when it happens again you begin to realize that this is just the way things are for people who cannot communicate and who are dependent upon caregivers.
I thought about getting on the iPhone and writing a really angry message and then getting someone to bring her back to read it. But I just did not bother. I guess I would just have to make another appointment with the nursing supervisor and issue yet another complaint.
I think part of it pissed me off that I had found her attractive and then she turned out to be such a bitch. What gave her the right to violate me in such a way? Just because I thought she was hot doesn’t mean I would’ve run up and grabbed her ass if I had the physical capability to do so. I’m not a misogynist, chauvinist pig. I respect women. I understand the concept “no means no”. All I could think of was God help her if she ever ran into a guy in a dark parking garage who had her same disrespect for the meaning of the word “no”.
Okay now you’re going to say how insensitive I’m being by equating sexual assault to getting my ass moved in the bed. That’s not what I’m saying. I’m saying that “no means no” in all circumstances big and small.
We will fast-forward to Tuesday or Wednesday the 13th or 14th when I was able to talk again using a special talking valve on the trach tube. I asked to speak to the nursing supervisor and complained again that one of her nurses had ignored my refusal to submit to something I thought was unnecessary and had no true medical purpose. I reiterated to her that it wasn’t like I was some sort of Alzheimer patient who didn’t really know what was going on. That I had the right to determine what did or did not happen to me as a patient. In this instance I was able to communicate that I did not want to be moved. I was not able to communicate a lengthy explanation why. But I should not have needed to. I said to the supervisor clearly “I understand the concept of ‘no means no’ and that I would think that a woman would appreciate that and treat me with the same respect that women expect from men.” I did make it clear to the nurse yet again that I had not been physically hurt nor psychologically scarred but I felt violated nevertheless. She agreed it was unfortunate situation that would be addressed again.
The Bigger Issues
There is a natural tendency to see someone with a physical disability and somehow presume some sort of diminished mental capability as well. That unfortunate presumption multiplies a hundredfold when the disabled person cannot speak. My late friend Christopher Lee whom I’ve spoken of earlier in this blog had an experience where he was sitting somewhere in a public place in his wheelchair with a lap tray on. Someone walked by and place money on his tray as if he were some sort of beggar. It was just a dollar or so. The childlike tone with which people would address him was commonplace. He said he could endure such insults because one time someone also mistakingly took him for being Stephen Hawking. So to him being mistaken for a mentally handicapped beggar got balanced out by being mistaken for being the world’s most famous genius.
A condescending tone is something I’ve experienced on a regular basis from strangers. My number one weapon against all that has been that I speak up and reveal myself to be articulate, educated, and in all other nonphysical respects a normal or above normal human being. I always understood that that defense was not available to people like my friend Christopher and was saddened by the fact that he had to endure such things. However I was getting a whole new appreciation of the kinds of things that Christopher and other non-communicative disabled people face on a daily basis.
In telling the story to friends and family and in describing the incidents to the nursing supervisor I’ve said things like “I’m college educated. My IQ came within two points of being eligible to join Mensa. I’m not an Alzheimer’s patient or a stroke victim or dementia victim who doesn’t know where they are or what they are doing, I’ve been dealing with this disability for my entire 61 years and I know my body better than anyone” etc. etc.
But somewhere along the way it occurred to me that that argument was a bit bogus. What if I wasn’t as smart or articulate or is experienced as I am? What if I was an Alzheimer’s patient who barely knew where I was or what was going on around me? At what point does having a mental deficit mean that it’s okay to deny me my rights to determine what happens to my own body? How mentally impaired does one need to be before they are no longer permitted to refuse nonessential care from an insensitive caregiver?
I began to feel a little bit guilty that I presumed that only smart, articulate people had the right to self-determination. People with dementia and other mental impairments suffer enough indignity as it is just because they are at times clueless as to their condition, surroundings, and entire state of being. Must they also suffer the indignity of not being able to direct their own physical care at least in noncritical circumstances? My experience in these two incidences lead me to conclude that they probably are treated in significantly disrespectful ways. My defense that I’m awake, alert, and ornery times three makes me guilty of looking down upon and disrespecting dementia patients as much as the people I’m railing against.
If I’m characterizing myself as “the man with no voice” to which no one is listening, how much more so are the dementia patients voiceless and unheard?
Thursday, December 8th was my first full day of having the trach tube. I was once again speechless as I had been when I was intubated. I learned lots of lessons from those first days. I wish I had had more time being able to talk before having the trach and more time to prepare for losing my voice again. But I had spent much of the past day or so going over things in my head about how I would adapt to the situation.
When dad came in Thursday morning I had him set up the iPhone so that I could type messages to him. I reported to him I had had some pain overnight but the pain medication they gave me took good care of it. I then told him that I was going to write some messages to the nurses and I wanted him to transcribe them on a piece of paper. I had already planned that it would be three iPhone screens worth of messages and I would have him write them all down on a single page. I told him to sit down and relax while I typed away. When I finished soon after, here is what the three messages said.
How to talk to me
Eyebrows up and down =Yes
Spit swishing =need mouth suction
Click tongue =Need to use message paper. You point to row then I do click then you point to letters and I click to select
I’m quoting these messages from my iCloud archives. I’m not sure that the phrase “Wink= I’m okay” was originally part of that page. I may have added it later and had dad write it in to the paper version later. I don’t really know when I added that particular communication gesture. I remember at the beginning I had the yes and no but on several occasions I tried to mouth the words “I’m okay” and many of the nurses were unable to read my lips. I thought that the words were distinct enough that you should have been able to understand me. All I know is that there were sufficient number of nurses who could not get it from lip reading so I invented the wink as a new way to communicate that fact. Once I had instructed them how to communicate with me, the next message talked about my specialized nurse call button.
My call button is in my right hand and is very touchy! Keep covers, tubing , and everything away.
Put rolled up washcloth under my wrist. My first finger on long metal part, thumb atop shorter part, blue part toward palm
Those particular instructions probably were very difficult to follow. We always tried to have the nurse take a good look at how my hand was positioned and how I was holding the button before moving it. Dad or Carol always put the button in my hand before they left me alone for the night. As I mentioned earlier, one of the problems was that I could not operate the iPhone and told the nurse call button at the same time. So my only means of communicating at night was by having the nurse point to the message paper row by row, column by column and spelling out words one letter at a time. The final message was instructions on how to safely reposition me.
How to move me
DON’T touch knees! The kneecap dislocate easy. Keep knees apart when lying flat but put side-by-side when rolling me. Roll me using hips and shoulders
The issue with my sensitive knees was one that really worried me. I had always relied on my ability to speak to that I could warn people not to grab my kneecaps. It must’ve been divine providence but I spent nearly an entire month in this hospital and another one and never once did my knees get kinked.
Once needs instructions were written down, I would leave this piece of paper lying on my chest throughout the night so that anyone who walked in might see it. I would tell each nurse to be sure to point it out to the next nurse during the shift change. Although this “User’s Manual” on how to operate me wasn’t always effective, it was better than nothing at all.
I’m going to issue a TMI warning at this point. (Too Much Information). This next section deals with some rather gross stuff.
Ever since I had the G-tube installed last May, I’ve had lots of trouble with constipation. After consulting with the gastroenterologist he suggested I take a dose of Mira-Lax as needed to keep things going. Through experimentation we had found that about one dose per week was enough to keep me going reasonably well. The problem was with all of the confusion and lung problems I couldn’t remember when I had had my last dose. I had to now been in the hospital five days and still had not had a bowel movement.
One of the things that concerned me was they had been giving me antibiotics. Traditionally that gives me diarrhea so I was a little bit reluctant to take a laxative if the antibiotics were already going to make me loose. Dad and I talked about it via my iPhone message and I decided to delay taking the laxative till later that day or perhaps the following day. As things turned out I took a dose of the Mira-Lax early the next morning.
Speaking of antibiotics, I don’t think I fully addressed the issue of whether I did or did not have pneumonia. Some of the Facebook messages posted by my sister Carol said I did or did not have pneumonia at various points. Some of my messages may also have been confusing. But here is the bottom line on the pneumonia issue. When I first went into the ER on December 3 they took an x-ray and said that my lungs looked clear. They later took a sputum sample and did a culture and discovered bacteria so based on that they concluded it was technically pneumonia. There was a second chest x-ray at one point but I don’t think I ever heard any of the results from it. So based on that sample, they gave me a few days of antibiotics but I really wasn’t on anything for very long.
The other topic of conversation with the nurses and doctors was my urinary output. I have an absolutely enormous bladder. It rarely empties completely. They can do an ultrasound scan on your bladder to estimate how much is in there. I was reluctant to let them do a scan because I knew they would find 700-800cc or more which would be very uncomfortable for the average person. I knew if they did a scan then they would want to catheterize me. I don’t even start to get uncomfortable till we approach 1100cc. They were not giving me all my usual medication and so I wasn’t peeing as much as I usually do. The problem is, those medications lower your blood pressure and they were already concerned about my blood pressure being low especially while I was sleeping.
I communicated some of that to the doctors by iPhone message but I found one other message shortly after that which I thought was kind of funny and worth quoting here.
Message for doctors
I peed right after you left.
I couldn’t pee while you were all standing around threatening me with catheter. Also note that I wear diapers at night which can’t be measured. I know when I need catheter trust me.
I ended up winning this argument. Despite their continued concern about my bladder, I never did let them catheterize me. This may seem like a minor victory but I needed a win to boost my spirits.
Weaning off the Ventilator
The plan was to try to have me off of the ventilator and just breathing normally through the trach as much as possible. This first day I was able to stay off the ventilator about five or six hours. From time to time I would start to get congested. The trach would make a rattling noise and at times it would get difficult to breathe when the congestion would appear.
The solution is to suction out the trach using a catheter. It had to be done by an RN. A regular patient care technician was not allowed to do it. They would open up a little kit that contained a pair of sterile latex gloves. Most of the latex gloves they just pull out of a box hanging on the wall are clean but not completely sterile. Their purpose is to protect the nurse or caregiver from my bodily fluids. However because you’re going to be sticking tubes into the trach directly into the lungs you need to be completely sterile.
The gloves in the kit have the cuffs turned up so that as you pull them on you are actually grabbing the cuff from the inside and only rolled the cuff back after it’s on your hand. They make a big deal out of the fact that one of your hands (your right hand if you’re right-handed, left otherwise) is your clean hand. Once you get that glove on you never touch anything except for the catheter tube itself. The other hand is your dirty hand and it can touch just about anything.
Once you get the gloves on, you hookup the catheter to a suctioning tube. There is a little hole at the top of the catheter that you can put your thumb over to either turn a suction on or release your thumb from the hole so that it leaks and doesn’t suck. With the suction off they stick the tube down your trach until they feel resistance. Basically the tube is hitting the Y branch in your windpipe where it splits to go to each lung. Then they put their thumb over the hole and slowly pull the catheter out while making a circular motion like you were stirring a cup of coffee.
Below is a YouTube video that demonstrates the process. In this video they set up a small container of sterile water to rinse out the catheter however they were not doing that part of the process at St. Vincent. This particular video was the only one I could find that was closest to what they did at St. Vincent.
All of the setup of the suction that they describe in the video was already in place. So it goes much faster than this particular video implies. But it would still take a considerable amount of time first of all to round up a nurse, she had to get the kit open, put on the gloves, connect the tubing, and do the procedure. Although they could make multiple passes of the tubing if the first one didn’t clear out completely, after one session they always threw away the tube. That means the next time they had to open a new kit and start from scratch. We asked if they could re-use the catheter to speed up the process. There were a couple of times where I was getting a little bit of distress waiting for them to get things set up. It took for a while to get a feel for when I really needed it. I didn’t want to ask for it at the first sign of a little rattle in my breathing. But I did not want to wait until I was in real distress because it took time to get things going.
Throughout the first day, I think I only needed suctioning two or three times over the five or six hours that I was off the ventilator. So it wasn’t too bad. By the time dad was ready to leave for the day I was ready to get back on the vent. I didn’t want to be off of it at this point at least unless there was somewhere on there with me who could call the nurse quickly if I got in trouble.
That pretty much describes my first full day of having the trach. The next day would be a very eventful day that included a visit from friends, surprise support from hundreds of miles away, and the dreaded “second incident”.
On December 5th I was complaining that the respiratory people were not doing enough suctioning to get my lungs cleared out in preparation for being extubated. But later that day and throughout the night they did several suctioning’s and my lungs were feeling much better. Everyone seemed anxious to get me extubated and since things were going better I agreed on the morning of the 6th to go ahead and remove the tube.
It’s not exactly painful to be extubated but it definitely is an uncomfortable experience having a long tube yanked out of your nose. It was good to be able to talk again although my throat was a little sore and my voice a little weak.
Shortly after they removed the tube one of the nurses looked in the hallway and said “There is a priest outside your room.” I told her to invite him in. I figured it was the St. Vincent chaplain. Much to my surprise it was my good friend Fr. Paul Landwerlen who had been a pastor of St. Gabriel for many years and was partially responsible for guiding me back into the Catholic Church after being away from a years. Fr. Paul had transferred to St. Vincent de Paul parish in Shelbyville Indiana but a couple of years ago had retired. He still lives in Shelbyville and fills in for other priests and parishes around the diocese.
He was surprised that I was extubated and was able to talk. That’s why he was just kind of lurking around outside praying for me and not disturbing me. We had a really nice conversation and I told him a little bit of what I’ve been going through. Naturally he was happy that I was off the vent and talking normally. He told me he had been having some problems with pneumonia lately but was treating it aggressively I was doing okay. We also talked about sports and he was looking forward to going to the next Colts game where he had been given tickets to watch the game and one of the luxury suites.
If I had seen him even a day earlier I would’ve asked him to give me the sacrament of anointing of the sick. As I mentioned before that isn’t necessarily the old-fashioned “Last Rites”. You don’t have to be on your deathbed to get that sacrament. However considering that I was now off the ventilator, my lungs felt good, I didn’t really feel like I needed anointing. I could see myself getting out of the hospital in a couple of days. I thought about having him hear my confession (not that I had any huge sins weighing on my conscience). But about that time dad came in and we talked. Soon after Fr. Paul left.
I brought dad up to speed with everything that happened since he left the previous night. Of course he was happy to see me off the ventilator and doing well.
At one point I was visited by the resident Dr. Heaven. She was the one who had tried to communicate with me using the message board with me pointing to it with a straw in my mouth. It was great to actually have a real conversation with her. I apologized to her for making her a guinea pig in my failed attempts to communicate. We both had a really good laugh over the whole crazy experience.
One of the challenges Dr. Heaven had was in the area of nursing skills. For example occasionally I needed to spit something out into the Yankaur but she had been having difficulty operating it. It’s just a plastic tube connected to a suction device like you spit into at the dentist office. But this one had sort of a plastic sheath over the end of it that for lack of a better word look like a foreskin. You had to pull back the plastic sheath in order to put it in your mouth. She didn’t know how to operate it. When I finally was able to explain to her how it works, she said “You been waiting for days to try to explain that to me haven’t you?” I laughed and said “Doc you are going to be a great doctor someday but I hate to tell you this that you make an absolutely lousy nurse.” and laughed heartily. She agreed with me completely. I told her that she should speak to the head of the residency program and tell them that my recommendation was that they take a day or a day and a half and have all the residents go to a CNA (Certified Nursing Assistant) in-service training for basic patient care skills. Like how to operate the suction, operating the hospital beds, how to turn a patient etc. She chimed in saying “I totally agree and on top of my list is how the hell do you get an IV pump to stop beeping!”
It was such a relief just to be able to talk to the woman and laugh and joke and relive all of the frustrations that we had in our working relationship up until that point.
I was also visited by the young man I spoke of a couple of installments ago who was the one person who was able to read my lips or understand what I was saying as they were trying to intubate me. It turns out he is a medical student named Brady Hansen. I congratulated him on being most focused on what was going on with me when he was in a room full of more educated and experienced people.
We joked about my communication problems with Dr. Heaven. They were both in the room at the same time as we were talking about having the residents learning nursing skills. In regards to my communication problems I said it reminded me of the famous line from the old Paul Newman movie “Cool Hand Luke” where the prison boss beats the crap out of Paul Newman and then on a thick southern drawl says “What we have here is failure to communicate”. Even though this young man was probably in his mid to late 20s likely not even 30 he knew the reference. I was very impressed. Anybody his age who can quote classic movie lines is pretty cool in my book.
I was reminded of a few months earlier when they were putting in my G-tube I was talking to radiology surgeon and telling him a joke about old-time radio and vaudeville comedian George Burns. He had never heard of him. The guy had to be 40 and 45. I realize that’s not 61 like me but I would’ve thought he had heard of George Burns. Yet another example of how student Dr. Brady was in my book ahead of his older and supposedly more experienced colleagues.
By the way several weeks later when I was finally out of the hospital I was browsing through the on-screen guide on my DVR and noticed that “Cool Hand Luke” was playing on Turner Classic Movies. I recorded it and watched it again. Below is a YouTube clip of the famous scene. I don’t know how long that clip will be valid because it probably violates copyright.
While talking to student Dr. Brady and resident Dr. Heaven I told them that part of the problem I had with using the communication board was that the alphabet was in alphabetical order instead of normal keyboard QWERTY order. A lot of times I couldn’t find the letter I was looking for. It reminded me of the old Stephen Wright joke where he asks “Why is the alphabet in that order?… Does it have something to do with that song?”. They both got a laugh out of that joke even though they’d never Stephen Wright.
Success was Short-lived
I don’t have a lot of notes about what else happened December 6th. For the most part it was uneventful day. I believe it was probably the day that I spoke to the nursing supervisor about the so-called “first incident” in which the nurse tried to maneuver me against my will and refuse to communicate with me. I don’t recall if Carol visited that afternoon after dad left or not.
Somewhere late in the evening of the sixth my lungs started going bad again. It was just like it had been three days earlier in the ER and when I first brought me into ICU. Sometimes I could breathe just fine. Then a minute later it felt like my windpipe was closing up from a spasm of some kind. It seemed to me like I was going to have to be intubated again. They paged whoever was on call from the pulmonary doctors. Again a large contingent of residents began to gather around. Among them was resident Dr. Heaven and Student Dr. Brady.
I don’t recall the name of the pulmonary doctor. He went up my nose with the scope and try to suction out some of the gunk. He was looking at a video screen when he noted that something was wrong with my vocal cords. They seem to be stuck together. The doctor who was operating the scope asked if there was a way to record this video. Student Dr. Brady whipped out his iPhone and begin videoing the screen. About that time one of the other doctors figured out that there was a record button on the scope itself and they began recording properly. Brady gave me a heads up that he had the video on his iPhone and would show me later.
I begin to think that whatever this vocal cord problem was had been a major part of my breathing difficulty all along. What felt to me like my entire windpipe spasming closed may have just been my vocal cords not opening properly. Below is a medical diagram illustrating how vocal cords are supposed to work.
In the video, mine were not completely closed but they weren’t as far open as they should have been. Also about one third of the way up there was a place where it looks like they were stuck together. The opening between the vocal cords look like a tall skinny figure 8 or perhaps an infinity symbol standing its end.
In the end they did not put the intubation tube back in me. They said what I really needed was a tracheostomy. They did clear out a bunch of gunk and I was able to breathe okay again using my CPAP and some oxygen. That evening and early the next morning I had several conversations with a variety of doctors about what it would mean to have a trach.
What Are My Options?
For many years I had known there was a possibility that I could end up on a ventilator permanently. I was beginning to wrestle with the fact that today might be the day that that happened. I had lots of questions for the doctors and in summary I learned the following… Doing a tracheostomy did not mean that I would be on a ventilator permanently. Having the hole in my throat would make it easier to suction out any congestion that developed in my lungs. I would not have to worry about the spells of respiratory distress that I had been experiencing.
A just recently watched a political dinner on C-SPAN where Hillary Clinton and Donald Trump spoke at some Catholic fundraiser. Clinton made some really good self-deprecating jokes and as usual Trump made a total ass of himself. But the guy who was the head of the organization look to be in his mid 60s and he had a trach tube in his throat. He was dressed in a white tie tuxedo just like all the other people in this very formal affair. He was the head of the organization presenting the event. However when he talked, he had to put his finger on the trach tube. I had seen other people with a trach and knew that in order to talk they either had to put their finger over the hole or press a button that would temporarily close the hole. This guy looked like he was pushing a button.
While it was reassuring to see a political and religious bigwig leading a relatively normal life despite a trach, there was no way I was going to be able to push the button like he was. The doctors who assured me that there was a special kind of talking valve that you can use instead. It was like a butterfly valve that when you inhale through the trach, the flaps collapsed together and let the air go past into your lungs. When you exhale, the flaps fly open and seal off the trach so that the air goes out you windpipe, past your vocal cords, and you can talk normally. He called it a “passing mirror valve”. He said something about the flaps popping open like a mirror.
I later learned that was not at all what was called or why it was called that. It is actually called a “Passy-Muir” valve after the two inventors named Patricia Passy and David Muir. More about them later…
They said that I would need to get used to the trach for a few days. I would be conducted to ventilator initially. Then they would gradually wean me off of the ventilator to breathe normally to the trach. Once I had established that I could do that well then they would try the Passy-Muir talking valve.
The bottom line was I would still be able to talk even with the trach. I would not be permanently on a ventilator at least not yet. And the fact that we could easily suction out any congestion that might accumulate would be a big plus. At this point it was a real no-brainer for me. I told them I would give consent to have the trach. They said that they would do it tomorrow (Wednesday, December 7).
Surgery by a Familiar Face
Wednesday morning we went over the details of the surgery again and I gave my consent. I don’t recall if I called dad at home and told him they were going to do the surgery or how he found out about it. I don’t believe I called him the night before because all of that suctioning and vocal cord issues were in the middle of the night. I’m pretty sure I called him early Wednesday morning to let him know what was going on so he could get there in time for the surgery. Karen was already planning to visit me that day. When dad told Carol about the surgery he said she did not need to come especially since Karen would be there. However Carol took off work to be there anyway.
I took a look at Facebook to see if I told everyone about the trach surgery. I can’t find any message where I told everyone that the surgery was going to happen. I did find this message that Carol posted. She told everyone I had called her and told her about the surgery. I don’t remember calling her directly. I thought dad had called her. Oh well…
Much to my surprise, the ear, nose, and throat doctor who was going to do my surgery was a familiar face. Dr. Robert Youkilis was my regular ENT doctor. I have problems with tinnitus or ringing in my ears. He also periodically cleans the buildup of wax out of my ears. He has consulted with me on my chronic sinus problems as well. It seems you never really know how specialized a specialist will be within their own field. Even though he is an ear, nose and throat doctor, I had only seen him for ears and slightly nose issues. I wondered if perhaps he was more of an ear specialist then the others. But apparently he does throats as well and would be doing my surgery. I never did find out if it was coincidence that he was the guy on call that day or if they called him specifically because I had him listed as my ENT doctor. I think it was probably just lucky coincidence or divine providence that he was the guy to do my surgery.
I was able to speak with him briefly before the surgery. We talked about my inability to be intubated normally and that we would have to do a nasal intubation up the left nostril. I believe it was about noon when they carted me off to the surgery. They transferred me from the hospital bed onto a gurney and I gave them warnings about being careful with my loose kneecaps. They said they could do the surgery on that gurney and I would not need to transfer again.
Dad followed me down to the surgery area but then eventually went to the surgery waiting room. They must’ve given me a really good dose of Versed because I don’t remember anything about going into the operating room. The next thing I knew, I was waking up back in my same room in the ICU. Dad and Carol and Karen were there.
Karen said “You probably think you are in bad shape for me to show up.” But I knew that she was coming anyway that day. I was slightly more surprised to see Carol but then again not really because I knew she would want to be there once she learned I was having surgery.
There was no pain in my throat where the actual trach was. By now I was getting used to waking up being on a ventilator so that wasn’t such a weird experience. My main problem was my mouth and tongue especially were very sore. Carol explained to me that the surgery had been a bit difficult. She said that Dr. Youkilis told them they had to put my tongue in a clamp and pull it out for some reason. I explained why my tongue was so sore. In fact there was an area on the tip of my tongue in the very center that was actually numb. It was well over a month until that numbness completely went away. I’m still not sure if it really went away or I just got used to it and my brain just sort of fills in whatever information it can to make my tongue feel normal.
I made the following post to Facebook via my iPhone at 2:41 p.m. saying that the surgery was over. Carol made a similar post to her Facebook page a few minutes later.
I just now browsed through my iPhone notes containing all of the messages I wrote to family and the nurses on my iPhone that day. Most of it was asking them to tell me more details about why the doctor had to put a clamp on my tongue. I also talked about what kind of pain medication I was getting and how often. The rest of that day I was just trying to recover from the surgery and dealing with the pain issues.
There was one note where I told Carol that I had talked to a chaplain and asked about getting anointed. I don’t recall when that happened but it must’ve been that morning before the surgery. Until I had the bad spell the night before and had decided to have the trach, I would not have requested the anointing. The chaplain told me that the priest would be in on Thursday and could do it then. I had told her there was no hurry and that was okay.
The plan was that they would gradually wean me off of the ventilator and let me breathe through the trach normally. I told them my iPhone message that I wanted to relax the rest of the day and try to get off the ventilator on Thursday. Apparently they agreed.
I’ve never been a big fan of Apple products. I always thought it was ridiculous that people would stand in line for hours to get the newest iPhone when they already had the previous model in their pocket. Why not just order the thing in the comfort of your home and wait for UPS or FedEx to deliver it. I’ve been very loyal to brands like HP printers, Gateway 2000 and Dell Computers but nothing like the fanaticism of Apple fans. Back in the day I had an Apple ] [ but I only had one because I thought it would give me more programming jobs. I never have owned a Mac of any kind. I’ve always been an MS-DOS and Windows and Intel-based PC kind of guy.
Many years ago I took a chance and bought an iPod touch version 1. It’s sort of like an iPhone without the phone. It was a touchscreen device for playing video, games, Internet access using Wi-Fi. I had a lot of fun with it and later upgraded to the iPod touch 4. However eventually the newer versions of iOS would not work with the iPod touch 4. I hated to buy a touch 5 at the time when the latest iPhone was a 6. I kept thinking they would come out with an iPod touch 6 but they never did. At one point I did a Google search for “Android alternative to iPod touch”. The recommendation was to buy a cheap android phone and don’t activate it. A few years ago I did just that. I purchased a Motorola Moto G android phone and did not activate it. I just used it like an iPod and was really happy with it.
Eventually I discovered a cell phone company called “Ting” which has a really cheap pay-as-you-go plan. You start with nine dollars per month. You get up to 100 minutes of talk for an additional three dollars per month. You get up to 100 MB data for additional three dollars per month. And you get an additional 100 text messages for three dollars per month. In most months I would need no data because I’m always at home on Wi-Fi. Also I don’t very often use text messaging. That means for $9+ $3 per month I could make a few phone calls and that would be it. Worst case scenario it was $9+$3+$3+$3=$15 per month if I talked, texted, and used some data. I couldn’t pass up that kind of deal.
I had no intention of going back to Apple or iPhone even if they did ever come out with another iPod touch. But then I discovered something amazing available in iOS. It was an but accessibility feature called “switch control”. Basically allows you to use a Bluetooth device with a couple of pushbuttons to have complete access to the phone without having to use the touchscreen. Although Android has a similar feature, it is so limited that it is basically useless. Here’s an article and a YouTube video that I created that shows how it works on my nephew’s iPad 2. It’s a little easier to see on a big screen like that than to demonstrate it on an iPhone.
When I was no longer able to use the touchscreen because my disability was getting worse, I absolutely had to switch to iPhone. I ended up getting an iPhone 6 and I was able to activate it using my existing inexpensive Ting plan. Of course I had to pay full price for the iPhone up front which was about $675 but all of you who are buying your phones on contract are paying that much for them anyway. You’re just spreading it out over a two-year contract.
I can’t really do everything with the iPhone that I used to be able to do with my old Android device actually using the touchscreen. I miss playing some of the games like Zuma, Where’s My Water, and at one time I was admittedly an Angry Birds addict. But for practical things like Facebook, IMDb, messaging etc. it’s been great to have full access to the iPhone. But I never thought that the phone would be such an essential item until I started using it in the hospital on December 5.
I normally keep my iPhone mounted on a metal bracket that attaches to a swingarm on my left arm rest. On the back of the bracket is a battery pack that I call a Printy-Boost that I designed for the Adafruit Learning System. And next to it is my “Ultimate Remote” which serves not only as a universal TV remote but as a Bluetooth device for operating the iPhone.
When dad brought the iPhone, we put it on one of those hospital bed trays that you can roll around and it extends out over the bed. We propped it up on its side but we needed something in back of it to hold it up. The nurses had brought in a pump to give me my G-tube feedings but for some reason somebody brought in two of them. We used the spare pump to prop up the phone. It was probably a $1000 piece of equipment we were using like a brick 🙂
Then we put the pushbuttons in my right hand and I called up the “Notes” app on the phone where I could type messages. Then the doctors or nurses or my family could look at the phone and read the messages. It’s interesting that all messages typed in the “Notes” app get archived in the iCloud. I’ve never thought I had much use for iCloud or Microsoft cloud or any other kind of cloud storage. But in the long run I was glad it did archive them. Even if you delete the messages, they remain in your trashcan for 30 days. So about 15 days into this endeavor, I decided that that was an excellent record of some of the things I had been through. I copied everything out of the trashcan into a special folder called “deleted messages”. Now as I write this blog I can go back and see every message that I wrote to the doctors, nurses etc. All the messages are dated however it doesn’t appear to have a timestamp or at least not one that I can find.
The first message that I typed on the iPhone was “Raise head”. Not exactly “Come here Mr. Watson I need you” or “What hath God wrought?” But it was a very practical first message. I couldn’t see the phone very well with the head of the bed lying flat. The next several messages were much more significant. They were notes that I wrote for the doctors and the nurses to try to explain some issues that I was having.
Avoiding the Trach
The next note that I typed on my iPhone gives a lot of insight into what I was worried about at that particular moment. I knew from experience with my mom that you can only be on a ventilator via an intubation tube about a week or so. Even though I had only been on this one a couple of days, I was already thinking way ahead. I wanted to make sure that I was not on the vent so long that they eventually had to do a tracheostomy. I was worried that I wasn’t getting the congestion cleared quickly enough. The ventilator tube had a built in suctioning device that they could stick down the inside of it and suck the gunk out of my lungs. They had done it once or twice in the beginning and it was extremely uncomfortable but it helped a lot. I was concerned they weren’t doing it enough. When I would spit into the Yankaur, all they were getting was spit and sinus drainage. I wasn’t coughing up anything and spitting out of my mouth. Here was the message…
Message to doctor
My breathing is good on vent but congestion is no better for the past 24 hours. Oral suction is getting saliva and sinus drainage only. I hate suctioning from vent but I’m willing,and requesting frequent vent suction because I think that it’s the only way I can get better. I want to know how long I can keep vent before I need trac. I want to avoid trac unless 100% necessary so I want to treat aggressively to avoid it. Tell nurse to tell doctor.
My next message was for the nurses to explain a little bit of a change procedure for using the message board. It read…
Message for nurse
I am only using the phone for long messages. Continue using paper for quick message about what I need. When I make click noise it means I want to use message board. You point at row. My eyebrows =yes. I twitch mouth= no. You point to each letter. I click to select.
Please explain this to next nurse at shift change.
This explains that rather than going letter by letter to the entire alphabet, we had determined it was easier to figure out which row the letter I wanted was in and then after picking the proper row going across the row and picking the letter. With the shift changing every 12 hours I needed to train a new nurse with all my signals and procedures. So I wanted to make sure that they didn’t just pass on my medical information but that they also pass on how to communicate with me.
Sometime after I wrote these messages the doctors must have come in and read the first one addressed to them. While they answered my question saying that I could be on vent for many, many days without having to get a trach, they didn’t get my point that I wanted to aggressive suctioning through the vent so that when I came off of it I would not have to go right back on or I would not have to go to the trach. The suctioning worked to clear my lungs but they weren’t doing it often enough. They kept coming in and giving me breathing treatments but they weren’t doing anything to clear the congestion. Apparently they were talking about taking me off the vent very soon. I wanted to be much better before they did even though I was anxious to be off of it. They seemed impressed that I wasn’t rely on the ventilator to breathe. There I was essentially breathing all my own even though I was connected to the machine. They were also impressed that my oxygen saturation level was consistently in the upper 90s. All that is great but if we don’t get the gunk out my lungs we are going to be in trouble again very soon. I wrote to them…
New message for doctor
They not understand my first message. I am certain that I can breathe okay if they removed vent right now but I am very certain I can’t cough up congestion if the vent is removed. That is why I requested that they suction through the vent. I understand that it would be easier to suction though a Trac but why cut a hole in throat if we haven’t tried suction thru the vent? The respiratory therapist have given me many treatments but not any vent suction in well over 24 hours. Please have nurse call doctor and read this message word for word.
This really illustrates one of the most frustrating parts about using the iPhone to communicate. It looked to me like they were skip reading what I wrote. They would just glance at it to get the gist of what I was trying to say. It took a lot of effort to type out a paragraph of text like this and I made every word count. This happened multiple times. I kind of felt like an ass telling them to “read it word for word” but it was obvious that they were not.
This type of aggressive most argumentative discussion with doctors is normal for me but had been impossible when all I could use was the message board. The iPhone really got me back in my game and got me actively involved in my own healthcare decisions. However in a few days those decisions would become so complicated that even the iPhone messaging system wasn’t enough. But for the time being I was extremely happy to be able to communicate more than a word or two.
Most of the messages were things like how to move my arm or leg to get more comfortable. A reminder to dad and Carol that if they saw the nurse move me around, to make sure that I got my call button back in my hand. One problem about using the iPhone was that I could either hold the iPhone buttons or the nurse call button but not both. So the plan was that anytime dad or Carol was with me, I would have the phone in front of me and if I needed the nurse they could call for me. But once Carol left at about 7 PM, she had to take the phone away and make sure that I had the nurse call button. I would not get back on the phone again until dad arrived in the morning.
One of the last messages on December 5 was to tell them to leave the TV on ESPN so I could watch the Colts game.
I did finally get the respiratory therapists to do more suctioning to get the gunk out of my lungs every time they came in every six hours to do a breathing treatment. It seemed to help. The plan was that I would probably be extubated and get of the vent tomorrow (the 6th).
There were absolutely no archived notes for December 6th. That’s because they did indeed pull the tube early that morning and I was able to talk normally all day.
Our normal routine over the next several days was that dad would come sometime around 9-10 AM in the morning and stay until around 5 PM when Carol would show up and stay with me until the 7 PM shift change. Visiting hours are normally until 8:30 PM however in the ICU they don’t allow family members in the room between 7:00 and 8:00. That’s because they don’t want family members overhearing the doctors and nurses giving reports between shifts. That means if you really wanted to stay until visiting hours are over, you have to kill that hour between 7-8 and then only get additional half hour of visiting time. So Carol would just leave at 7:00 PM.
I mentioned earlier that I told dad to bring my iPhone. Now that I think about it, I seem to recall that dad had already left when I thought of the idea. I use the message board to tell Carol to call dad and have him bring the iPhone. I hoped that I could find a way to type messages on it to communicate easier.
I knew that Carol was posting Facebook messages and that would cover most people. But I know there are some people who don’t check in Facebook very often especially my friend Judy Chapman. So using the message board on the night of the fourth, I told Carol to call Judy and let her know what was going on with me. I was 99.99% sure that her daughter Anne had probably seen the messages on Facebook and would have told Judy. But I just wanted her to get a personal call from us.
I later heard that my request “Call Judy and let her know I’m here” got delivered as “Chris wants to see you.” Well okay… That wasn’t exactly a lie. I really did want to see Judy even though that’s not what I attempted to communicate. This was one case where someone who knew me well (Carol) knew what I really wanted despite my limited ability to express it. Even though she didn’t deliver the message I was trying to deliver, she got the real message right by reading between the lines.
The Second Morning
As a result of my request to inform Judy where I was, December 5 I woke to find Judy walking into my hospital room in the ICU. It brought back memories of a previous visit described here in an older blog. I was very happy to see her. She had taken off work that morning to visit me. It was a bit difficult at first because she didn’t know my yes/no signals but we figured them out pretty quickly. She kept trying to pat my hand to comfort me but unfortunately she was hitting my hand that had the call button in it. I didn’t have an easy way to tell her she could pat anything but that hand.
While Judy was in the room but there was no nurse around, two guys came in lab coats and said they wanted to put in a central line in my arm. It’s called a PIC line which I think stands from Peripheral Inserted Central Line. I had had one before in my neck and they said this one would go in my arm which was easier. I like the idea. However they wanted to put it in my right arm. I talked them into doing the left one because I was worried it would interfere with me using my call button in my right hand. Judy was able to tell them my signals for yes and no. She later said she didn’t feel like she had helped much but I explained just having her able to tell these guys how to interpret my facial movements as yes or no was a big big help.
In the end they agreed and put the line in my left arm despite the fact that the right arm was according to them “the usual way”. It must have something to do with your heart on one side or the other. As it turned out, the PIC line would not have interfered with my right arm. It was nice that these guys were paying attention to me. Much better than I had the day before.
Judy visited for a while. I don’t really remember how long but she determined that I was doing okay despite the circumstances. She went ahead and went on to work the rest of the day. I’m glad my message to her was interpreted wrong. I was really happy she came.
“Only a space…”
I went to a special education school from kindergarten all the way through high school. They had a really nice physical therapy department that included lots of mats for working out, weights of all sizes, and a swimming pool. I never used any of it most of the time I was there. When I did, it wasn’t so much for therapy as it was to get a break from the depressing high school situation we had there. For kids with polio, cerebral palsy or spina bifida physical therapy really had a positive impact. But for guys with muscular dystrophy there really wasn’t anything you could do to help the situation.
When I was about three or four years old when my parents took me to a clinic at Riley Children’s Hospital. They had physical therapists there who would do all sorts of range of motion exercises on me and encourage my mom to do them on a regular basis. I would come away from a clinic visit there with all my joints terribly sprained. The contractures in my joints had already started an early age and all of the exercises they did to try to loosen me up did nothing but hyper extend my joints and tear my tendons.
I will plead guilty to being a “mama’s boy”. I was an only child in the first eight years of my life an incredibly spoiled not only by my parents but grandparents and great aunts. But there were only 2 times in my life that I ever got so needy that I wouldn’t sleep in my own bed and wanted to sleep near mommy. One was after I fell out of my wheelchair at a day camp at Crossroads Rehabilitation Center. And the other one was after an especially torturous physical therapy session that severely sprained my ankles, knees, and elbows. So needless to say I was not a big fan of physical therapy. I later learned the adage that “Only a space separates the therapist from the rapist”.
Sometime after Judy left on the morning of December 5 with no nurse in the room, a man in a woman came in saying they were physical therapists who had been called in to evaluate me. I was absolutely petrified! These people were going to start twisting and turning me in painful ways and I was going to be unable to even grunt or moan in pain. They quickly caught on to my yes and no signals and started asking me about things that were enormously beyond my capability and had they been attempted would’ve caused serious injury. Things like pivoting into a chair. That is a process where someone helps you to sit on the edge of the bed, grab you under the armpits putting about half of your weight on your feet, and then pivoting you into a chair. I vigorously signaled my “NO” signal to all of these suggestions such as sitting on the edge of the bed.
Although they did gently move my arms and legs a bit to see what my range of motion was, they did not try to in any way forcibly extend that range has had the therapists done to me when I was a toddler.
In a nutshell… They listened to me. They respected me. They respected my “NO”. And in the end left me alone absolutely none the worse for the wear. Had things gone differently I would have labeled this “The Second Incident” but in fact I now refer to it as “The Non-Incident”.
I told you in the last installment about my interview with the nursing supervisor and the way I felt disrespected and maneuvered against my will by an impatient nurse. I also spoke with this nursing supervisor about this non-incident with the physical therapist. First I said that I didn’t appreciate them calling in the therapist without at least discussing it with me or my family. We could’ve explained to them a number of things that would’ve made the therapy visit unnecessary and certainly less risky. I would have preferred to have a friend or family member present during such an encounter. So I was pretty firm with my displeasure on how the therapist got there in the first place. But I countered that with the highest praise I could muster for the way those therapists conducted themselves. I told her how scared I was and then how relieved I was when they listened to my “no” and respected my wishes. I asked her to please thank them for their professionalism.
Shortly thereafter, dad showed up with my iPhone and that turned out.to be a real game changer in my ability to communicate with people. The challenges were still huge but at least we were putting a pretty good dent in those challenges. More on that in the next installment.
When I woke the next morning I was still intubated of course and on a ventilator. My initial reaction when waking up and finding myself in such condition is I often feel like the ventilator is breathing a little bit shallower than I would like. However this time it wasn’t as bad as my previous experiences and I was more ready for it. The first time I woke on a ventilator several years ago I felt like the settings were way too low and I had that “I can’t breathe” situation where that one respiratory therapist was the only one who understood my problem.
St. Vincent nursing staff does 12 hour shifts with a shift change at 7 AM and 7 PM. There was a new nurse in the room so it had to be after the 7 AM change. Also in the room was a young resident named Dr. Heaven although she pronounces it Haven. She’s kind of petite with her hair pulled back in a ponytail and kind of nerdy glasses. She somewhat resembled my maker friend Limor “LadyAda” Fried except the doctor didn’t have pink hair like LadyAda.
Before I had gone on the vent I had asked if they had some sort of message board that I could point to to communicate while on the ventilator. The new nurse had a piece of paper with the alphabet displayed in rows and columns and some other symbols and icons around the edge like daytime, nighttime, pain I forget what else. I had told the previous nurse that I would try to point to the message board with a straw in my mouth. So we attempted to do that.
Note: after I posted this blog earlier today I went through some old paperwork that I brought back with me from the hospital and found this original message board. There are penciled in sections that we added several days later so for purposes of this blog entry assume that the pencil writing wasn’t there. You can click on the image for a larger version.
Dr. Heaven held the paper up in front of my face and I tried to type out some messages. The first thing that I noticed was that it was difficult for me to point accurately because she was holding the paper too far away. I couldn’t get the far end of the straw to actually touch the page so it was really difficult to tell where I was pointing. The whole thing was just a regular 8.5″ x 11″ piece of paper held up landscape orientation. Each square containing a letter was probably at most a square 1 inch. Try pointing at that with a stick at a distance of even two or 3 inches and it’s difficult to precisely tell which letter you are pointing at.
One of the problems with even an accurate way of spelling out messages is that it’s hard for the recipient of the message to connect the letters into words. For example my Uncle Keith is severely hearing impaired and my Aunt Barbara is totally deaf. I learned the finger spelling alphabet at an early age and when I have a little more dexterity with my fingers I could spell words using finger spelling sign language. But I never could read sign language. Even if they spell a word slowly I could recognize each letter but somehow I always perceived it as individual letters in my brain. I couldn’t ever learn to form words. I always thought it gave me a little insight into what might be like to have dyslexia or some other learning disability.
When mom had been in intensive care for 19 days with her pancreas problems and finally was in the St. Elizabeth Seton specialty wing rehabilitating, she would try to use finger spell sign language to talk to me or dad. The only way we could do it is if I would read the letters out loud as she was spelling things and dad would write it down and then we would try to read it back by inserting spaces where we thought they might go.
People were having the same problem understanding me. By the time I pointed to one letter or another they had forgotten what I had already pointed to. They had to write it down as I typed it. I don’t really recall what I tried to type initially. But I was far enough into the process and realizing that I needed the paper to be held closer to me that I decided to forget about whatever else it was I wanted to say and to try to tell them to hold the paper closer.
The very first message that I successfully communicated to Dr. Heaven was “paper closer”. I don’t recall if she wrote it down or the nurse wrote it down or how they managed to get my sequence of letters to reveal those two words but I did successfully communicate those two words. Unfortunately the young resident was clueless as to what I was trying to communicate with those two words. She didn’t understand that I wanted her to hold the paper closer to me so that I could more accurately communicate. As I tried to type out another message… I don’t recall what it was I was trying to say… The way she was holding the paper was slowly drifting further away and making accurate typing even more difficult. If she had understood what I meant by “paper closer” the system might have worked.
At some point after Dr. Heaven left, I tried communicating with one of the nurses with her just pointing at the letters. I had already established with them that wiggling my eyebrows up and down was yes and twitching my mouth left and right was no. Somewhere along the way I also established that making a clicking sound with my tongue who get their attention. And I could use the clicking sound when they pointed to letters on the message board as if I was clicking on it with the mouse. Of course the tongue clicking originated with my late friend Christopher Lee who could not talk because of his severe cerebral palsy. I built the computer for him where he could click into a microphone and use it as a single switch scanning communication system. More on that later.
A Refusal to Communicate
While I could laugh in frustration at my inability to get the resident to understand what “paper closer” meant, there was another communication problem that was not the tiniest bit funny. The new nurse for this first dayshift was extremely impatient with the slowness of my communication.
She was also extremely insistent that she repositioned me as is their usual protocol. I fully understand why they have rules that you should turn the patient every few hours. For the most part it is to protect your skin from bedsores. On the other hand I know my body better than anyone else. Unlike many “quadriplegic” patients, my inability to move does not preclude me from feeling everything. My motor neurons are shot but my sensory nerves are completely intact. I know when I’m feeling pressure and what to do about it. For me if I lie flat on my back without my head elevated even the tiniest bit, all of the pressure equalizes over the widest area of my body arms and legs. If you try to jam a pillow under one side or the other, everything gets imbalanced and it actually creates pressure points. Of course it’s difficult to communicate that using slow typing message board and an inpatient nurse. The best I could do was when they would try to starts a pillow under me I would give them an emphatic “NO” signal.
Her only explanation in refusing to follow my “no” was to say “we have to”.
Timeout for a minute. When I type the word “REALLY?” like that, you need to read it in the same tone of voice used by Seth Meyers and Amy Poehler in their famous SNL sketch titled “Really?” If you’re not familiar with that sketch, stop reading right now and check out this YouTube video for an example. You really need to see this sketch if you’re going to appreciate the rest of this blog.
Do you think you could be more condescending? I recall numerous arguments between my mother and my sisters when they were little kids and they would give mom a very defiant “why?” whenever mom would insist upon something they didn’t want to do. Mom would reply to them “Because I’m the mom and what I say goes”. When this nurse said to me simply “We have to” all I could hear was my mother saying “Because I’m the mom”. Another resident or nurse I’m not sure which also gave me a similar condescending explanation. I only saw this other woman this one time but her explanation of why they had to stuff pillows under me was “We just have to. We wouldn’t be taking good care of you if we didn’t”. Did these people really think I had been in a wheelchair my entire life and didn’t understand skincare issues? I’ve been wrestling with this longer than they’ve been alive.
While I was 99.999% sure that this was totally motivated by my skincare concerns, there was a possibility that they were concerned about my lungs. If that was the case then I would put up with it. I would suffer discomfort and risk pressure points on my skin in order to help my lungs. On the other hand I had been in the ICU less than 24 hours and there was no way my skin was going to start breaking down that quickly. I wanted to stay comfortably flat without being twisted and propped into awkward positions for my own good.
I wanted to ask the nurse if her insistence on repositioning me was based on my skincare or my lungs. I tried to get her to hold up the communication board and she refused! What had been a frustrating situation about my comfort at suddenly turned into a battle of wills in which she could not only enforce her will upon me as if I were a little child, she now had a means to basically enforce a gag order on me by not allowing me to use the only method of communication available to me.
My St. Vincent Call Button
Next this inpatient nurse with whom I’ve been having a battle of wits noticed my special called button in my right hand. She picked it up, stared at it in amazement, and said “WHAT is this?” It is a rather bizarre looking thing. She commented that it had these strange metal prongs sticking out of it that look like they should be plugged into something. She basically ripped it out of my hand and laid aside and went about doing whatever she was doing.
Now not only was she refusing to communicate with me, she removed the only remaining method I had of communicating with anyone else which was to be able to press the call button. So for example if she left the room and I hit the button I might be able to get a more cooperative nurse to come. But now that option was unceremoniously deprived of me. Not to mention if there was something medically wrong with me and I actually needed a nurse I had no way to call.
What I thought was going to be “the last straw” was one final refusal of hers to communicate with me when she said “You need to stop trying to talk”.
There have been times when I tried to talk and I shouldn’t have. At 3 AM the previous night when they were trying to get the intubation tube up my nose and in my throat I was trying to ask what was going wrong and why was it taking so long. They told me don’t talk and that was a legitimate request. But this was in no way medically motivated. She sort of implied that I needed to calm down and shut up because trying to talk with getting me agitated. Talking wasn’t upsetting me… Her refusal to allow me to communicate was what was upsetting me. If she wanted me to calm down maybe she would treat me like an adult human being and listen to what the fuck I was trying to say to her.
I couldn’t do anything but just lay there and be pissed off. I kept thinking about how I’ve always been able to be such an active participant in my own health care. Dozens of nurses have praised me saying how much they enjoy having me for a patient because I can tell them exactly what I need. I can explain to them how to grab me, how to roll me, how to prop up a urinal between my legs so I can pee comfortably. By the way they all have great things to say about my skin. Even this horrible nurse who was so concerned about protecting me from bedsores at one point ended up saying what remarkable skin I have. When she told me what great skin I had I wanted to say to her “Then why the hell won’t you trust me to manage it?”
By the way I’m not in any way discounting the need to protect myself from bedsores. My mother had a really good friend who was a paraplegic that she worked with in various advocacy groups. He had pressure sores that went septic and it killed him and he was probably in his late 40s and otherwise medically stable besides his spinal cord injury. My cousin Nancy struggled with pressure sores on her feet that ended up with her needing amputation of one of her legs below the knee. So I take this stuff seriously. But I understand my own body. I’ve been living with this situation for 61+ years.
I’ve always been able to win these battles because I can communicate. I was laying there stewing over all of this and thinking things like “I’m not some Alzheimer’s or dementia patient or stroke victim who doesn’t know where they are or what they are doing. I’ve got an IQ well above 120 and only missed passing the Mensa exam by 2 percentage points. I know what the fuck I’m talking about. They just can’t talk down to me like this.”
So there I sat with nothing to do but think about “The Questionnaire” that I had been given less than 24 hours prior. It occurred to me that in the situation I was in now, I would actually answer some of those questions very differently.
I need to be 100% clear about what was really going on here. Not in this incident nor in another one I will describe later was I ever physically harmed. Although I was a bit emotionally shaken by the whole thing, I can’t really say that it rose to the level of verbal or emotional abuse. I suppose I would feel differently about it if I was in a permanent situation with a caregiver such as this and had to endure it every day. This was really a battle of wits. A kind of pissing contest in which I was getting both pissed off and pissed on. But there were serious principles at stake. I have the right to refuse any treatment whatsoever. There was no reason to shut off communication with me and in fact that cut off of communication put me at risk. It was clearly the first time in my life where I felt totally helpless and slightly endangered at the hands of a caregiver. It’s exactly the kind of thing the questionnaire was trying to uncover.
At some point they had let me know that they had called my dad that morning to let him know that I had been intubated. I doubt that it came to any surprise because I think we both anticipated it was going to happen. I was more surprised that they didn’t try to do it in the ER or shortly after I arrived in the ICU but as I explained this breathing difficulty would come and go in waves and every time he got bad it would clear up again. So in some respects dad wasn’t going to be surprised to see me on the vent because they had told him in advance.
When dad arrived he talked to this nasty nurse and she gave him a reasonable update about my condition. That I was doing okay on the vent. But at some point she says to him “He shouldn’t be talking right now.”
REALLY?… REALLY?… REAL fucking LY?…
R E A L L Y !!!????
My Father walks in the door having recently learned I was intubated. He really has no idea what my medical condition is or isn’t, even though you’ve told him I’m doing relatively well.
And then you tell him that I shouldn’t be talking!
What on God’s green earth would motivate you to say that to my Father? This was the absolute last straw! What the fuck is he supposed to think now? Not only does it conjure up all sorts of medical complications that are nonexistent and probably leave him with 100 questions about why I shouldn’t be talking. Now she’s trying to impede my communication with the only person in the universe who can help me in this particular situation. It’s bad enough that she doesn’t have the time or the patience or the concern to talk to me. Now she’s trying to limit my ability to communicate with a man who loves me most of the world. He is the most absolute patient human being ever created by God Almighty. And he has nothing to do except sit and try to communicate with me. And she’s telling him that I shouldn’t be talking.
Sweetheart you had better hope I die before I regain the ability to talk. Because when I can talk. I’m going to have a fucking encyclopedia worth of things to say about you.
By the way I later asked my dad what he thought when she said I should not be talking. It really was of no concern. It was like… Well he’s got a tube in his throat. He can’t talk. So what’s the big deal? He did not take it to mean there should be no attempt to communicate with me at all. He took it to be literally “talking” which of course I couldn’t do. So my concern that it unnecessarily worried him turned out not to be true. It still doesn’t excuse the situation.
I Get My Chance to Communicate After All
Normally as I write these blogs I try to do them chronologically and I leave cliffhangers for dramatic effect as in the foreshadowing of both “The First Incident” and the fact that there is at least one other. But I’m going to jump to the end of this particular story and tell you how it resolved 2 days later.
This was the morning of Sunday, December 4th but on Tuesday, December 6th I was doing well enough that they removed the intubation tube and I could talk normally. And it so happened that a nursing supervisor stopped by sometime during the day and asked me how things were going. I had a similar supervisor visit during my hospitalization back in May when I had the G-tube placed and I was fighting a UTI. I’m really not a complainer. I don’t get pissed if the nurse doesn’t come within 30 seconds of me pushing the call button. I don’t care if my bath comes late. I’m a very patient patient. But when the supervisor asked me back in May if there was anything wrong way decided to tell her about a problem with respiratory therapist. The RT didn’t want to hook up the humidifier to my CPAP machine. In the end it was a good thing I did complaint. The respiratory therapist was wrong. I should’ve complained to someone the first day. So having that incident under my belt made it very easy to jump right in and tell the supervisor what had happened with the nurse refusing to communicate in treating me in such a condescending way.
Not that I would’ve needed the experience back in May to voice my opinion this time around. I would tell it stranger on the street about this. It reminds me of the joke about the guy who goes in to confession and tells the priest about all of the women that he’s had sex with. The priest says to him “My son you don’t sound like you have any regrets. Why are you confessing?” The guy replies “I’m not Catholic. I’m not here to confess. I’m just telling everybody!” So it’s a little bit disingenuous of me to say that the experience back in May made it easier for me to complain this time around.
So I told the nurse supervisor the whole thing in approximately the same amount of detail that I’ve related here. I made it clear to the woman that I had not been physically nor emotionally harmed. But that I did feel violated. That I did feel disrespected. That I did feel that I had clearly tried to exercise my right to refuse “treatment” and that those wishes had not been met. I told her that I respected their protocols about skincare and could understand why they would be insistent upon them but that I felt I had a legitimate reason to refuse. I gave her the “I’m not an Alzheimer’s or dementia patient I’ve got an IQ of blah blah blah blah” speech.
And then I made it clear to her that while I could possibly get over that disappointment of losing this little battle of wits. That this whole deal “You shouldn’t be talking” was way, way, way out of bounds since there was no medical reason whatsoever for it. And that the worst most unforgivable aspect of the entire incident was to say that to my Father again for no medical reason and at a time within minutes of him walking in the door and not really understanding my condition. That wasn’t a battle of wits or an argument over skincare protocol. That was medical misinformation delivered to my family member who is my designated medical representative.
Because it was two days later a lot of the fury, anger, hatred had faded but the determination to correct the situation of course had not and to some extent still hasn’t. This issue is going to become a crusade for me. This blog isn’t just to exercise my writing muscles and to entertain friends and family. This is a big issue and is going to be one that I continue to pursue as an advocate.
I told the supervisor that things got better later in the day and I may have had her as my daytime nurse the second day without further incident, But because things had gone a little smoother, I told the supervisor that I really didn’t want anyone reprimand or fired or punished. But we certainly have one hell of a teachable moment.
I don’t recall the name of this nurse supervisor but she listened intently. Understood everything I was saying. Agreed with pretty much everything I said that this should not have happened. And she promised me that it would be addressed. I never saw that condescending nurse again.
As I said… I’m jumping ahead a couple of days from the 4th to the 6th. There was another I guess we will call it “non-incident” on the 5th that I discussed with the supervisor on the 6th. I will go back and tell those stories in context later.
Just to reassure readers… “The Second Incident” which occurred on Friday, December 9th and which we will tell you about later, was again more a battle of wits than any physical or emotional abuse. It had some unique elements we will discuss. But after all of the cliffhangers, I just want to let everyone know by except for the 2 incidents, I had magnificent care from everyone both at St. Vincent 86th Street and at St. Vincent Seton Specialty Hospital to which I was later transferred. And that in neither of these incidents was I in any way physically harmed. I was made physically uncomfortable and angered by lack of respect for my wishes and self determination. But I never was really in harms way. And I would tell you if I had been.
I was able to use the communication board to talk to my dad and to the nurses later in the day. I instructed dad to bring my iPhone when he came back the next day. So beginning on December 5th I was able to use my iPhone and my ultimate remote control gadget to type messages to family, nurses and doctors. More on that in the future installments.
In this time of year all the news organizations are recapping the top 10 stories of 2016. I like to take this opportunity to recap the top 10 stories of my life. In any other year items like getting sued in federal district court for copyright infringement would be the number one item but not in this very busy and eventful year. It comes in further down the list. Actually in any other year any of the top four or even five of these stories could have been number one .
So here are the top 10 news stories in my life counting down from 10 to number one.
10. Major new connections on Facebook
From time to time I do Google searches or Facebook searches for long lost friends. 2016 yielded three major finds that I had been seeking for a long time. My old college buddy Frank Williams who is still playing keyboards in bars and nightclubs just like he was when I knew him 40 years ago at IUPUI. We haven’t gotten together in person yet but we’ve exchanged emails and follow each other on Facebook. Ellie Vinci also from my college days was the first girl who wasn’t in a wheelchair that I ever took on a date. Among other things we did back in the day was see Jaws, and go to a hockey game. She taught me an appreciation for violence on ice. My friendship with taught me the value of a strong nonromantic friendship with a female and became the foundation for many other similar relationships throughout my life. And finally Cheryl Fayette, my date for the senior prom and the first girl I ever kissed. Sadly my reconnection with her on Facebook was postmortem.
After making Ray Traced CGI Christmas cards using POV-Ray every year since 1995, this year I created a Christmas card that was a photograph of 3D printed statues re-creating a look of my 1995 CGI rendered card. This was a major accomplishment to get the POV-Ray models converted to something that could be 3D printed. It was the culmination of 18 months of work since I first got my 3D printer in the summer of 2015.
Several years ago I developed a library of software for Arduino based microcontrollers that sends, receives, and decodes infrared signals such as those used in TV remotes. In 2016 I did a major rewrite to version 2 that took me many months to complete. The new software is much more flexible, expandable, and includes a new 117 page user’s manual. Released as open source for the world to use 100% free. I cannot begin to count the hours I spent on this project in 2015 and 2016.
Somewhat related to item 9 but actually a separate development project I built a new ultimate remote control that not only controls every TV and cable box in the house but uses Bluetooth connection to my new iPhone 6 that allows me to use iOS accessibility switch control features to have full control of the iPhone without using the touchscreen. Both the IR portion and the Bluetooth switch control of the iPhone by using three micro switches that I hold in my right hand. This is the latest in a long series of adaptive technologies I built using Arduino based microcontrollers and represents the most powerful device I’ve ever built in this category. This device was an essential part of my ability to communicate with doctors and nurses during my December 2016 hospital stay.
After my friend Rick Ruiz had to quit as my home health aide in November 2015 I’ve spent more than half of the time since then without a home health aide and when I did have them they did not last very long. We’ve had approximately 15 different people. Our longtime agency Acme Home Care could no longer supply a person and we moved to a new agency First Horizon where we are getting much better service. This is been a real strain on dad having to spend so much time taking care of me. However we have recently expanded from six days per week to a full 7 days per week.
5. Returned to Teaching RCIA
After teaching RCIA for more than 30 years I had retired because the program had been taken over by St. Michael’s parish. However when the RCIA program returned to St. Gabriel I decided to come out of retirement and teach again. I taught three lessons at the beginning of the year and it was wonderful to return to my most treasured ministry. I’m not sure if I will teach next year but it was good to be back one more time.
4. Sued for Copyright Infringement in Federal Court
Was threatened with a lawsuit for the use of a photo of the Indianapolis skyline as the background of my 2013 Christmas Card. Retained a lawyer but negotiations failed and the suit was ultimately filed in June of this year. After spending thousands of dollars in lawyers fees it was finally settled out of court. The details of the case yet to be blogged.
3.Stopped Eating and got a G-tube Placed
As my spinal muscular atrophy has progressed my ability to swallow has been severely compromised. I made the decision to stop eating altogether because it was becoming way too difficult. I had a surgical G-tube inserted in my stomach in May of this year. The procedure was supposed to be done outpatient however I was hospitalized for a UTI few days prior to the scheduled procedure so we did it while I was still an inpatient. I still eat occasional soft foods such as ice cream and cake for birthday parties and pumpkin pie for Thanksgiving. I continued to drink Coke and take most of my medications orally although that may be changing soon.
This April my new reclining power wheelchair with a mouth control joystick finally arrived after a nearly year-long process of evaluating equipment, going through paperwork, having an evaluation from a physical therapist and doctors. Even after the chair arrived we had much difficulty getting me able to operate it and had to build a new joystick mount using my 3D printer. Software glitches and mechanical problems also delayed my initial use of the wheelchair but since then it has operated well and I regained much of the independence I lost in late 2015 when I could no longer drive my old wheelchair.
1. While Hospitalized for Most of December with Tracheostomy Learned of New Treatment for SMA approved by FDA
A simple viral head cold led to a call to 911, an ambulance trip to St. Vincent ER, a tracheostomy and a lengthy wait in Seton Specialty Hospital to get a new in-home ventilator approved. This is the longest continuous hospitalization of my life. The adventure of not being able to communicate while intubated or on the ventilator led to a emotional roller coaster experience that has inspired me to write what may become my next published work after beginning with an extensive blog version. While recuperating in the hospital and waiting on the vent approval learned that the FDA has approved the new drug treatment for Spinal Muscular Atrophy. While primarily aimed at infant Type I patients it has also been approved for use by my Type II children and adults. Although I will not likely benefit from the treatment it is an encouraging sign that others may not have to endure much of what I have lived through for 61 years. The entire hospital experience also illustrated the depth of support and friendship that I have in the maker community which has gone way beyond what I ever expected. This entire month of December could easily be described as the top story of the past decade of my life. The full ramifications of which are not yet known. Extensive blog coverage of these events is still being written.
I anticipated that I was settled in for the night. They seem to have finished poking and prodding at me and I’ve answered all the questions. The BiPAP was continuing to be a little bit out of phase but I was compensating best I could. However somewhere around 2 AM the “come-and-go” congestion got really worse. I told the nurse I wasn’t doing very well and she could see that for herself. It wasn’t long before I was in yet another of these very serious spells of respiratory distress. We made the decision that I needed to be intubated.
They called for the pulmonary doctor who happened to be one that was familiar to me I guy named Dr. Pfeiffer. He was a partner to my regular pulmonary doctor whose name is Dr. Vohra. Pfeiffer does all of the in-hospital work for that particular partnership. I had had him before as had my mother on many occasions years ago when she was battling lung cancer. He would not remember me or her given the number of patients he sees on a regular basis but I remember him and knew I was in good hands.
It took a while to get everything organized. Residents and interns started showing up. The nurse said to me “You are drawing a crowd”. It reminded me of a running joke I have with my friend Anne Chapman about all of the artistic skills we have based on things we can “draw” such as: I can draw a bath. I can draw a glass of water. I can draw the wrong conclusion. At the time it seemed to me the phrase “I can draw a crowd” might not ever have been on the list that Anne and I had compiled. However prior to writing this blog I dug out the old list and “draw a crowd” was indeed already on it.
Because my mouth doesn’t open very far there’s no way to intubate me using the normal method down throat. I always have to be intubated in my nose. I explained to them that the left nostril was the best one. I told them that occasionally they have used pediatric size tubing. They go in with a scope so that they can see what they’re doing. One of the first times I had to be nasally intubated they just jammed into me blindly and it went really badly. Fortunately the scope method is much smoother. They spray a bunch of medicine in your nose to attempt to numb it. It never does seem to completely numb the pain for example in the way that a shot of Novocain deadens your mouth for dental procedures. Some of it they squirt in and some of it they dab in on the end of a Q-tip. I say it doesn’t work very well but who knows… Maybe it would be much worse if they didn’t do it.
They had some Versed anesthetic available that makes you forget procedures such as this and some other kind of mild anesthetic ready to inject into the IV that have been placed in the back of my right hand. But they didn’t want to give me any of that until they actually had the tube inserted.
While we were waiting for Dr. Pfeiffer to arrive I had a conversation with the nurse and told her that I would raise my eyebrows up and down for yes and wiggle my mouth left to right to indicate no. I can’t really move my head up and down or side to side so that was the best I can do. I asked if they had some sort of chart or paper with the alphabet on it so that we can spell out words. She said that she believed they did have something like that available. Because I can’t point to such a chart with my hand, I suggested that they put a straw in my mouth, hold the chart up in front of me, and I would try to point to it with the straw. I had never actually attempted this but I had been thinking about it many times since the last time I had to be intubated. She said we would try it.
Dr. Pfeiffer finally arrived and began the procedure. He would get the tube just to the point where it felt like it was about to enter my windpipe but he would not put it all away in. I couldn’t figure out what was holding him up. Of course your gag reflex kicks in and the entire process is quite unpleasant. I knew I shouldn’t be talking but at times I tried to ask why isn’t it working? Sometimes I would get really distressed and couldn’t breathe I would try to mouth words like “I can’t breathe”.
I had an amazing sense of déjà vu because there were probably eight people standing around me working on me and some of them were trying to understand what I was saying to them but there it was one young guy standing in the back who was the only one out of the group that can either read my lips on makes sense of what I was trying to mumble at various times. I recall the first time I ever came out of anesthetic from my intestinal surgery and I was on the ventilator I tried to mouth the words “I can’t breathe”. A young male respiratory therapist on that particular day was the only one who understood me. I wonder is this young man was also a respiratory therapist.
In that previous incident years ago, I had the pleasure to talk to that guy later after I had the intubation tube out. I thanked him for being the only one in a group of supposedly more educated people who were standing around me clueless as to what was going on and that he was the one who understood me. Whoever this new young man was I hope to be able to later have a conversation with him and congratulate him for being the only one in the room who was aware of my needs. Spoiler alert… He was a medical student and I did have an opportunity to talk to him a few days later. We developed a great report and friendship throughout my stay in the ICU. We will have more about him later.
Somehow I became aware that the reason they were having such difficulty is that there was a huge mucous plug that he was having to suction out of the way before he could get the intubation tube into my lungs. The combination of that and my somewhat strange anatomy had made the whole process very difficult. Eventually the tube went in and the anesthetic followed and I was out for the night.
To be continued…Not in the next post but in the following post titled “The First Incident“