It’s been quite a while since my previous installment because I had a major computer crash that took a week or so to recover. Then I got distracted with other things. We are now up to Friday, December 16 which is the first weekend that I spent in Seton Specialty Hospital. I had a bit of a rough night the night before. Here was my early morning Facebook post at 8:17 a.m.
The plans for Friday were to try to get me sitting up in the wheelchair. Dad brought my wheelchair with him that morning because the physical therapist said I should be getting up. It turns out the therapists were pretty busy that day and they decided they couldn’t help. Dad didn’t really need much of any help getting me dressed and in the chair except that we didn’t have any experience operating their patient lift equipment. As it turned out since I had had a kind of rough night the night before I decided to just stay in bed and we would get me in the wheelchair on Monday when the therapists could help us. Here is another Facebook post from later in the day at 5:06 p.m.
My friends Rich and Kathy Logan were planning to come by to visit me that evening. I had Rich bring me a print out of my communication board because I had a quick update I wanted to get and I didn’t want to wait until dad came the next day. But before they came, I kept myself busy throughout the day working on a 3D printing project.
Remote 3D Printing
Although my specialized nurse call button was working okay at the new hospital, my hand holding that button wasn’t doing as well. At one point a few years ago I thought I had glued a metal ring on the side of it that I would stick my finger into that would help me hold that in the proper position. Somewhere along the way I lost the metal ring. It’s extremely difficult to get the button positioned exactly the way I needed it. Anytime someone moved me or had to take the button away and put it back it was always difficult to get it put back in exactly the right position. Rather than trying to have my dad come up with a new piece of metal to glue onto the side of the switch, it was going to be easier to design and 3D print a new piece.
My St. Vincent Call Button
I do all my 3D modeling in a program called Blender 3D. That program isn’t specifically designed for 3D printing. It’s used mostly for rendering and creating video games and doing photorealistic 3D models similar to what I create in POV-Ray. It’s free and open source and rather than learn one CAD program for rendering and another one for 3D printing I decided to just stick with Blender bback when I first got my 3D printer. So I downloaded a copy onto my laptop and begin designing a little ring that would fit on the side of the nurse call button. Once I had a prototype designed, I transferred it from my laptop to my desktop at home using Team Viewer file transfer features. I told dad when he got home that he should turn on the 3D printer. I would type messages to him on the screen of my desktop and I would initiate the 3D print. I have a WebCam pointed at the 3D printer so I could remotely monitor the progress of the print.
For many months I’ve had difficulty getting parts to reliably stick to the build plate. However just prior to going to the hospital I had installed a new Zebra Plate build plate on the printer that had been working wonderfully. It worked beautifully again when I was printing the part. I printed the part Friday night and dad brought it in Saturday morning. It turned out that I needed to put a little twist in the model so that the switch would be in the proper position. I actually printed 2 different versions at different angles but even the one with the greatest twist wasn’t quite enough. I printed a third version Saturday night and dad brought it in Sunday morning. The final version worked just fine. Here is a screen grab showing the part that I modeled in Blender 3D. It illustrates 2 different versions with a slightly different angle on the slot that fits onto the original switch.
Here are some photos of the final part attached to my nurse call button. The 3D printed part is in green plastic.
The use of a closed ring to put my finger through worked so well that when I got home I redesigned the way I use my pushbutton switches on my iPhone and my bedroom IR remote/alarm button. Prior to this, I had a 3D printed part that help to position the buttons my hand but they were just a couple notches to position my fingers. After my experience with the closed ring, I redid the part on my iPhone and remote switches to completely enclose one of the rings around my finger. I tried using 2 rings. I tried the ring around the index finger. But ultimately it works best with only one ring around my middle finger and just a notch for my index finger. Here are some photos that show the old and new versions of that switch. And some photos of it in use. A friend of mine from Facebook once described this as a Doctor Strange “sling ring”. It really made me mad when he said that. I wasn’t offended. I was mad that I didn’t think of the name first 🙂
Although this revised system worked fairly well throughout the rest of my stay at Seton, the way that the wire comes off of the switch would often get in the way of my wrist or my forearm. After I got home from the hospital I decided I would take the switch apart. And I would change the way the wire extends from the switch. I would redesign the ring. As I am writing this blog I’m also working on a new 3D printed part for the hospital call button. It will look more like the ones I use on my remote at home in that it will have a middle finger ring and a first finger notch. As I mentioned above, I could not hold both the call button and my remote buttons at the same time. Ultimately I hope to be able to resolve that problem as well for the next time I am in the hospital.
Having a Prophet for a Friend
That evening I was visited by my great friends Rich and Kathy Logan. I’ve known them since my college days and I was the best man at their wedding years ago. I took the opportunity to tell the story of everything that had happened while I was in St. Vincent’s Hospital getting the trach. They had visited me at St. Vincent but I was unable to talk during those visits so I had lots of stories to tell them. Basically they got a condensed version of my entire 12 part blog where I wrote about the St. Vincent stay.
When you lay around the hospital for days and you contemplate the friendships you have and legacy that you have built, you tend to think of things that had been left unsaid. While there really wasn’t anything significant unsaid between me and the Logans, there was one story I have been meaning to tell them for a long time and had not gotten around to it.
When I teach religion classes for the RCIA program at St. Gabriel, I teach a class about the Old Testament prophets. Normally you think of a prophet is a person who predicts the future. But that really isn’t the primary role of a prophet. Prophets are actually spokespersons for God. I described them as similar to the White House Press Secretary. Of course I used to use that example when we had decent people in that job. I would hate to equate a prophet of God with someone like Sean Spicer 🙂 Instead think of C.J.Cregg from The West Wing. But not only are prophets spokespersons for God, specifically their role is to call us back to God when we go astray. To remind us of our core principles when we tend to forget them ourselves. Typically a prophet says if you don’t shape up, things will go bad for you and if you do shape up things will go well for you. Whichever happens… their prophecy tends to come true.
As examples in my class I cite people like Abraham Lincoln whose Gettysburg address was a prophetic message that reminded us what we were fighting for in the Civil War. I also include people like JFK with his “Ask not what your country can do for you… Ask what you can do for your country”. Similarly prophets are dreamers. People who dream about what the world would be like if we would stick to our core principles. The primary example of course is Martin Luther King Jr. and his “I have a dream” address.
But I also give biblical examples of prophets who are personal friends. My favorite story is the story of Nathan who is a prophet to King David and who called him out when he killed one of his generals Uriah to cover up the fact that he was sleeping with Uriah’s wife Bathsheba. I tell the class sometimes our friends are prophets for us who call us back to be the best versions of ourselves. To be the people that they know we can be. To be the people who made them want to be our friends in the first place. I explained that true friends are the people who can lovingly look us in the eye and say “You fucked up but I love you anyway. Now get your god damn shit together.”
Of course I don’t use that kind of language teaching the class… But you get the point.
So I told Rich and Kathy that when I teach that part of the class, they are among the friends I think of who are my prophets and to whom occasionally I have been a prophet. I explained that what I cherish most about our friendship was our ability to lovingly point out when we were being a real dick about something. I also confessed to them that I had not always exercised my role as a prophet to them out of the purest of motives. Sometimes I had been a bit self-serving in my role as a prophet and that was something which I regretted.
It wasn’t exactly a deathbed confession and I made it clear that it wasn’t. But it was nice to take the opportunity to thank them for being prophets for me and to say that I haven’t always been the purest of prophet for them even though I tried to be.
There is a parable about a guy who goes to heaven and asked Jesus “What in your opinion was the worst sin that I ever confessed?” Jesus replied “Once you had confessed your sin, I didn’t remember it anymore. So I can’t answer that.” Like the true friends that they are, the Logan’s didn’t recall the incidents that I had recounted until I recounted them.
Scripture says “Faithful friends are life-saving medicine…” Sirach 6:16
I have no doubt that they and other faithful friends had been life-saving medicine for me.
Thursday, December 15 was my first full day at Seton Specialty Hospital. I was visited by a long list of therapists. I’ve never had any physical or occupational therapy of any kind throughout my life. You may recall in my ICU story a very tense and scary visit from a group of physical therapists who attempted to evaluate me even though I couldn’t talk because I was on a ventilator. Fortunately that incident turned out okay because they respected my wishes not to be manipulated physically by them. This was unlike some of the nurses I encountered in the ICU.
Apparently therapy is big business in a long-term specialty hospital like this. The goal is to get people stronger, faster, better and that takes therapy. I was visited by a physical therapist, occupational therapist, a skin specialist who inspected me for bedsores, and a speech therapist who is there to evaluate my swallowing difficulties. We made plans with the physical therapist to try to get me up in my wheelchair as early as the next day. The skin nurses were as usual very impressed at the lack of any sort of skin sores or lesions. Throughout my entire two-week visit in this hospital I continued to have to argue to convince them that lying flat on my back and not turning on my side very much if at all was the best thing for the condition of my skin. Whenever they argued back at me I would invite them to look at my skin and ask them if my ideas about how to protect my skin were so bad, how come my skin looks so good. I had no trouble convincing the occupational therapists that I really didn’t need anything from them.
The speech therapist wasn’t there to work on my speech. Now that I was off the vent and had my voice back there was nothing wrong with that. But she was there to evaluate my swallowing difficulties. After my G-tube procedure in May 2016 I had continued to drink Coke and to take oral medication by mouth. But there was always a risk of aspirating something. She had me try swallowing ice chips and water and of course concluded my ability to swallow was awful. The conclusion was all of my medication would continue to be ground up, mixed with water, and put in to the G-tube. I don’t recall if it was at this point or another visit later on by the speech therapist that they discussed something called “Frazier Water Protocol”. It’s the idea that if you have difficulty swallowing and are at risk of aspirating fluid, that it’s not only okay to drink plain water but it’s a good idea. The theory is if you have good oral care and keep your mouth clean and you are drinking plain water, even if you would accidentally aspirate something it would just be plain water and would not be harmful. Or at least not as harmful as aspirating food or other kinds of liquid such as milk, soda etc.
Keeping a clean mouth is a big part of that. The nurses would swab my mouth with a sponge swab soaked in mouthwash a couple of times a day. Sometimes it was with a small brush that wasn’t really like a toothbrush but they did brush your teeth and mouth with it. The respiratory therapist would also do some sort of swabbing twice a day so I was actually getting mouth care four times a day.
Speaking of respiratory therapists, they would do a catheter suction of my trach as needed. They would give me albuterol breathing treatments every six hours around the clock (yes in the middle of the night). Additionally there is a piece of gauze with a slit in it that slides around my trach. That would get changed twice a day. The strap around my neck that holds in the trach would get changed every other day.
When I wasn’t on the ventilator (which was all day long) they would place a sort of cup-shaped clear plastic device over the opening of the trach that was held in place by a strap around my neck. It’s called the trach mask. It was connected by hose to a humidifier and about 6 litres per minute of oxygen. Normally when you breathe through your mouth or through your nose, the air is both heated and moisturized by your mouth or nasal passages. However when breathing through a trach, the air goes directly into your windpipe and into your lungs. So you need some way to get heat and humidity to keep your lungs from drying out. At times it was turned up to 10 liters which made it very noisy. If there was a low point in the hose, then condensation would collect and it would start making a terrible rattling noise. There was a bag in the circuit that you could tip the hose the right way and would dump the condensation into a collection bag. Most of the time just to cut down on the noise I would have people turn it down a little bit.
Among the other new people I met was a new case manager a woman named Michelle. It became apparent that any progress towards getting my ventilator at home were probably rolled back to the beginning. The transition between St. Vincent’s case manager and this new one did not go well. This entire process of getting the ventilator was predicted to take 2 weeks and I felt like we’ve wasted three or four days already.
Here is my only Facebook post for the 15th.
The rooms in Seton Specialty Hospital are much smaller than those in the regular St. Vincent Hospital. Most of St. Vincent’s rooms were originally 2 bed rooms that had been converted into a single bed room. So they were quite spacious. The ICU rooms also have a good amount of space because often you have lots of IVs, ventilators etc. and they need room to work on you in critical situations. So this room felt quite cramped compared to what I had been used to.
The cable TV system had a good mix of basic cable channels such as ESPN, news channels, sci-fi etc. of course along with the local channels. It was an analog cable system unlike the digital IP-based system used in St. Vincent. Fortunately that meant there were no spurious pop-up messages interrupting my viewing. Of course it always takes a couple of days to figure out where your favorite channels are. The remote is only channel up and channel down so you can’t just jump to a particular channel. You have to scroll through all of them and invariably you always end up searching the wrong direction and having to go all the way around and back again to get what you want to see.
The shape of the room was really strange. There was sort of a little alcove off in one corner that had a window so you can see outdoors. But the alcove was so small you could hardly get a wheelchair in there. There was sort of a shelf table built into the wall and we kept my laptop and iPhone sitting there when I wasn’t using it. There was an electrical outlet nearby so I can keep everything charged up. There were two chairs in the room for visitors. One was a reclining chair for a patient to sit in when they were up and about and the other was just a regular chair. Somewhere along the way we lost the recliner. If I had multiple visitors we had to scrounge up an extra chair for them to sit in.
While in the ICU I had used mostly my iPhone for Internet access to things like Facebook and email as well as text messages occasionally. But now that I could talk again, we set up my laptop computer on the bed tray. I used my usual voice control software supplemented by my IR remote that helps with mouse control. It also gets me out of trouble whenever the voice control locks up which unfortunately is frequently. One of the problems with the IR remote is that I can’t use it and hold the nurse call button at the same time. That generally meant that I only used the laptop while dad was visiting and he could call the nurse for me if need be. The Wi-Fi here was apparently the same system used by regular St. Vincent because the special login screen was identical. I never had any trouble connecting to it and was able to watch streaming video just fine as well as to do some live streaming from my iPhone using the Wi-Fi.
One of the big challenges for me as the person addicted to TV is that while you’re in the hospital you risk having your DVR overflow. Bright House has a webpage that you are supposed to be able to login to access your DVR. You can’t watch what’s recorded but you can see what programs you have, what is scheduled, and you can access the program guide to schedule new programs. Unfortunately for some reason I couldn’t get it to work. I later discovered that there’s some sort of glitch that it doesn’t work when your DVR is above 90% full. I found an alternate way to access the DVR which I will describe in a minute. But once I got it cleaned out using this alternate method, suddenly the webpage access started working again.
We have 2 DVR’s in our house. One in the living room that records programs that dad watches alone or that he and I watch together. The other one is in my bedroom and it records stuff that I watch by myself. In my office which is about halfway between the living room and my bedroom, I have a TV that can connect to either DVR. We don’t really have traditional “whole house DVR”. I just sort of rigged things that way. There is a 15 foot HDMI cable that runs from the living room cable box into my office into an HDMI port. There’s also a coaxial cable that runs a longer distance from the office TV into my bedroom and connects to the bedroom DVR. By changing the input on that office TV I can switch between the two.
I also have web controlled TV remotes built on Arduino Yun IOT boards in the living room, office and my bedroom. I can call up a webpage from any device connected to my home Wi-Fi and have complete control of the TVs, cable boxes etc. You can’t access these web-based remote controls from outside my home Wi-Fi but I have a workaround for that. I used a remote access program called Team Viewer that lets me login to my home desktop in the office from anywhere else such as my laptop in the hospital. I then call up the TV remote webpages on my office computer remotely via Team Viewer and I can control both DVR’s and all three TVs.
So I had my dad take the WebCam off the top of my computer monitor and prop it up pointed at the office TV. I then logged in to the office computer using Team Viewer and looked at the office TV using the WebCam. I then used the browser-based TV remotes to switch back and forth between the living room DVR and bedroom DVR. I used the web-based remote in the living room and the bedroom to browse through the programs, erase a few of them to make room, and reschedule re-recording those programs later in the week. This is a process I do on a daily basis when I’m home. If I have a movie recorded and I’m running out of space, I do a search for when the movie is going to be on again later. I then schedule a re-recording and delete the copy I already have recorded. So this WebCam based, Team Viewer controlled access allowed me to do just that and it kept both of my DVR’s in reasonable shape. I did end up deleting a couple of programs that were not that important to me and that I could not re-record. Also there was a miscommunication with dad about managing the living room DVR and he deleted a couple of programs I would’ve liked to have kept. I tried using this method to watch a TV show that I had recorded but the quality of watching it over the WebCam and poor sound coming to the WebCam microphone made it not really worth the effort. As I will explain later, I used this remote login and WebCam access for other purposes as well.
Updated Users Manual
That first day I also took the opportunity to type up my handwritten “Users Manual Chris Young” that I had written while in the ICU. It was instructions on things like “Don’t touch my kneecaps because they dislocate easily”, “How I signal yes or no”, “How to use the message board for me to spell messages”, and “How to put the call button in my hand”. Additionally I made new versions of the keyboard chart that I have people point to so that I can spell out messages when I can’t use my iPhone and cannot talk while I’m on the ventilator at night. Eventually I made 2 charts: one of them I called the “Letter Board” and the other one I called the “Word Board”. The letter board was simply a traditional QWERTY keyboard layout with instructions on how to point at the rows and columns for me to type out messages. The word board had words and phrases that I would use frequently. It turns out that 95% of what I needed people to do while I was on the ventilator could be handled by the word board and the letter board which had been my only means of communication was now sort of a backup for special cases. Here are what the two communication boards look like. Note: you can click on the images for larger versions.
When I came up with my first draft of my instruction manual, I uploaded it along with the communications charts to my desktop at home using the file transfer features of Team Viewer. Dad would bring me the printed pages the next day. The document went through several revisions both the communication charts and the instruction manual. At one point I had a critical update I needed to make to one of the charts that I wanted to get right away. I don’t remember what it was I wanted to add but I didn’t want to wait for dad to bring it the next day. I knew that my friends Rich and Kathy Logan were coming to visit me and I asked Rich if he could print a copy and bring it with him. So I emailed it to him and he brought it when he visited.
I don’t really have early drafts of the documents but I’m going to include here the final version because that’s all I saved. There were a variety of updates over the first week or so of my stay at Seton Hospital. Here is the final draft of my users manual.
How to communicate with me.
Eyebrows up and down = YES Mouth twitch left and right = NO Winking one eye = “I’m okay” Clicking sound with my tongue= Need to use message board. If I shut my eyes tight it means I can’t see the message board the way you are holding it. It needs to be directly in front of me and a fairly high up. There are two kinds. One of them has words and the other letters. Hold up the word board and ask if I want it or the other one. See instructions on the boards.
What to do when I press my nurse call button…
Ask me “did you call?” Unfortunately a couple of times I’ve accidentally hit the button in my sleep.
Ask me “Do you need your mouth suctioned” This is the most likely thing I need
Ask me “Do you need your trach suctioned” I’m talking about the built-in sucker of the vent tube
If I you can’t read lips or figure out what I want then go to the message boards as explained above.
How to position me: DO NOT TOUCH MY KNEES.
My kneecaps dislocate easily. You can grab my legs above the knee, below the knee, behind knees but not on the knee caps. Leave knees apart while lying flat. Position knees side-by-side when rolling me. Grab hips and shoulders to roll. Be careful knees don’t hit the railing while rolling me.
My Special Call Button
I hold a special called button in my right hand. It is difficult to put in position so avoid moving my right hand unless necessary. Place rolled piece of foam under my wrist halfway between wrist and forearm. Insert index finger into green ring. The blue block on the side of the switch goes towards my palm. My thumb rests on top of the metal tab.
Keep covers away from my right hand so it doesn’t interfere with the button. Before leaving, ask me to test the button. I will push it if I can. If successful, reset the light and you can leave.
About the room
I like to be able to look out the door. Please leave the curtain open unless I’m getting naked. Do not shut the door unless you are in with me.
About the bed
I know patients are supposed to sit up however with my scoliosis I am much more comfortable lying flat. Sitting upright compresses my lungs and makes it MORE DIFFICULT to breathe. I do not roll on my side very much because I cannot operate the nurse call button reliably while on my side. (although new adaptation to call switch may help that.) I use the Yanker to clear saliva from mouth when you are in the room but I use the spit cup when no one is around so I don’t have to bother you constantly to suction my mouth.
In addition to typing up my instruction manual and working on my communication charts I also worked on a document I called “calendar.doc”. It is just a sentence or two about what went on each day. That would later help me to prepare these blog posts. Because I’d only been in the ICU about a week and I did have some iCloud notes and Facebook posts to refresh my memory, I was able to re-create what it happened that first week. But going forward this little cheat sheet of what I did each day was going to be quite valuable for putting together the blogs. And speaking of blogs… I began the first draft of the first installment of my blog series “Pray That They Listen to the Man with No Voice“.
This is the first in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.
In a previous 14 part blog series titled “Pray That They Listen to the Man with No Voice” I recounted my weeklong hospitalization in St. Vincent’s ICU with severe respiratory problems. The end result was I had to have a trach installed. After about a week, I was no longer sick enough to be in the ICU however I still needed to use a ventilator to sleep at night and St. Vincent’s rules are such that you cannot have a ventilator in a regular hospital room. So instead I had to be transferred to what is called a “long-term acute care hospital”. The facility of choice was St. Vincent Seton Specialty Hospital which is just a few blocks away from the regular St. Vincent Hospital.
That previous blog series, the events from December 1, 2016 through December 14 but I did not finish writing it until late March. I promise to pick up the story of my recovery at Seton Hospital “very soon”. But now it is mid-July and I’m just now getting around to it. This part of the story isn’t nearly as dramatic or traumatic as was the previous story. Still I feel a need to share it because some interesting things did happen along the way and I promised I would finish the story so I will. This series will pick up on December 14, 2016 and run through December 28 when I finally got home. As you can see I ended up spending Christmas in the hospital so let’s title this series “Holiday Hospital”.
Throughout this blog if you see this little Facebook logo it is a link to a Facebook post of mine that I posted at the time of the events I’m describing.
Before we talk about everything I did and what happened at this new hospital I thought I would give you some background about it and the Saint that is its namesake.
St. Elizabeth Ann Seton was the first nativeborn American to be canonized as a Saint by the Roman Catholic Church. She founded a Catholic girl school in Emmitsburg Maryland and founded the first religious order of sisters in America called the Sisters of Charity. That religious order is connected to St. Vincent Hospital and so this auxiliary hospital which is part of the St. Vincent system bears her name. While most Sisters belonging to religious communities or founding religious communities are single women, Seton was married, had children and then widowed before she became Catholic and then eventually founded her religious order. Seton is her married name. You can read all about her on Wikipedia here. https://en.wikipedia.org/wiki/Elizabeth_Ann_Seton
As mentioned earlier this hospital is known as a “long-term acute care hospital” and according to the website specializes in the treatment of medically complex patients who require extended hospital stays often of 25 days or longer. I would end up staying there 2 weeks but many of the people had been there much longer. Is located at 8050 Township Line Rd. it’s a relatively small hospital just two stories and they told me at has about 75 beds. Here is their website https://www.stvincent.org/locations/hospitals/seton
I’m not sure exactly what all services they have there. I did pass by an x-ray room. They have a really big physical therapy department because lots of the patients are trying to regain strength either to go home or perhaps to a rehab hospital. Here is a YouTube video that is a tour of the facility.
Many years ago (2004?) after my mother had spent 19 days in a drug-induced coma while she was fighting sepsis after pancreas surgery, she transferred to Seton Hospital. However it was not located in a separate building at that time. It was just one floor of one wing at the regular St. Vincent Hospital. But they insisted it was bureaucratically actually a separate institution. I don’t know when they moved it from that section of regular St. Vincent into this particular building.
The regular St. Vincent Hospital is a teaching hospital so your first line of contact with the doctors is generally by a resident who is under the supervision of an attending or a group of attendings. Of course you also have lots of specialist doctors such as pulmonary, urology, G.I. and of course surgeons roaming around. At Seton as best I can tell there is one main doctor pretty much covering the entire facility. They bring in specialists as needed from the regular St. Vincent Hospital but on a regular basis I think there is only one guy on call. As a replacement for residents the instead have some nurse practitioners who are the front line medical people. All of the nurse practitioners I had while I was there were women. As explained in the video the nurse to patient ratio is about 1:4. In addition to the nurses they have patient care technicians who do things like take vital signs, bedpan duty, bathing duty etc. just like a regular hospital.
Also as explained in the video, there are no nurses stations per se. There is an area the end of the hall in the advanced care section where they monitor some monitors and there are desks and phones where I would often see the case management people working. But for the most part the nurses hang out in the hallways at desks built into niches in the walls and sit at computers. I’m not really sure what is on the computers however because a lot of the patient records are in three-ring notebooks. This is in contrast to regular St. Vincent which appears to be about 99% paperless in its record keeping. At St. Vincent there is a Dell PC in every single room and all of the activities are recorded directly into the computerized system. Apparently Seton is still a little bit old school (behind the times) by having traditional paper patient charts.
There is also a very active staff of respiratory therapy people roaming the halls all the time. At regular St. Vincent you would see respiratory therapists come and go as needed and they apparently had some sort of homebase somewhere in the hospital from which they worked but at Seton they seem to be hanging out in the hallways constantly. Just about everyone in the place had some sort of respiratory therapy needs even if it was just oxygen.
Like the regular hospital, the nurses basically work 12 hours shifts with the shift change occurring at 7 PM and 7 AM with a brief overlap to brief the next shift on what was going on. One brilliant bit of scheduling however is that the respiratory therapists have their shift change at 6 PM and 6 AM so you don’t have the entire staff turning over at once. That seemed like a really good idea that worked well for me on a number of occasions.
Another bit of interesting scheduling is that half of the patients would receive their bed baths in the morning back the dayshift and the other half would get bathed in the evening by the night shift. The entire time I was there I would get my bath in the evening. In most hospitals I would guess that only a fraction of the patients needed assistance with bathing but here everybody was in pretty bad shape and virtually everyone needed a bed bath every day. So I thought it was clever to split the duties between the two shifts.
My biggest apprehension about moving to Seton Hospital was my concerns about my call button. If you read any of the other stories about my hospital stays you know that I have a little microswitch on the end of a long cord that is a specialty call button that I use in St. Vincent Hospital. It has a quarter-inch mono jack on the end sort of like the plug you would use on electric guitar. At St. Vincent it plugs into the wall and sets off an alarm that calls the nurse. Originally it just called the nurse but I think nowadays it’s actually wired into the bed alarm which detects when a non-ambulatory patient tries to get out of bed without assistance.
My St. Vincent Call Button
I’m guessing I first got the device perhaps 25 or 30 years ago when I was in St. Vincent for some reason or another. It was probably a diverticulitis attack although it might’ve been pneumonia I don’t recall. I was unable to use the regular nurse call button. The various specialty buttons they had available such as a squeeze ball or an elbow pad just wouldn’t work for me. Dad and I tried to wire in a microswitch but we couldn’t get it to work. I’ve used microswitches for a variety of purposes over the years. When we couldn’t get this to work, they sent someone down from the rehab engineering department and he put together this switch. He told us to take it home with us when we left and bring it back anytime we returned and so for three decades that’s what we’ve done. At one point they changed their system from a normally open switch to a normally closed switch so they had to rewire it for us. Dad replaced the cord at one point because the old one was too stiff. But otherwise it’s been that same system they built for us years ago. I’ve never been in any other hospital besides St. Vincent on 86th Street and I wasn’t really sure if that quarter-inch mono plug was some kind of standard or if it was something unique to that hospital.
When we got to Seton the plug in the wall for the nurse call was some sort of bizarre multi-pin connector that I had never seen before. However they brought in a box full of specialty call buttons like those I had tried and rejected at St. Vincent decades ago. They all had the quarter-inch mono plug and they also had an adapter that converted the multi-pin jack into the quarter-inch socket that we needed. For some reason it would not work when we plugged it into the wall but there was another place to plug in on the bed itself and that worked perfectly. I can’t begin to imagine how I would’ve gotten by had we not gotten this call button to work.
When I was at the ICU I had dad bring in my laptop computer for one day to see if I could use my IR remote and the on-screen keyboard on Windows 10 to type messages. I knew that it had a “switch control” feature where you could scan the keyboard and use a single pushbutton to select letters but I had never really tried to use it before. It turns out that compared to the switch control features of Apple iOS on my iPhone, Windows switch control is a piece of crap. Because I was on the ventilator almost the entire time that I was there, I couldn’t use the voice control so I was really better off forgoing the laptop and just using my iPhone. But now that I was going to be settling into a new place and could talk the entire time except for at night, I definitely wanted to get the laptop set up. Not only would it give me easier access to email, Facebook etc. I could also use Team Viewer to log into my PC at home and do lots of other things remotely which we will describe later on. So it was not only did I have my voice back, it was good to have my voice controlled computer back as well because that’s my normal way of operating a computer these days. This was the first Facebook post I made on the laptop after moving into Seton.
More G-tube Controversy
A day or so before I left the ICU we had an incident where my G-tube fell out. They asked me why it came out and my response was “I’m surprised it stayed in this long the way you people have been yanking on it and tripping over the tube”. You can read that story here. The end result however was that I got a new G-tube placed the morning that I left for Seton. When the nurses looked at it they were a bit confused because it looked like it wasn’t an ordinary G-tube.
There are actually three different kinds of tubes they can put in. A G-tube extends a short distance through your abdomen into your stomach and is used primarily for people like me who can’t swallow. However if you have digestive difficulties there is another kind of tube called a J-tube that extends several inches down into your small intestine. I had heard about J-tubes but was not aware that there was also a third kind that was a combination of the two. The tube actually has 2 tubes embedded in it. One empties into your stomach like a G-tube and the other goes down into your intestine like a J-tube. It has 2 ports depending on which tube you want to use. One of them you use for nutrition and the other for medication although at the moment I can’t recall which is which. I don’t understand the medical reasons why you would have a combo tube.
Anyway… One of the nurses looked at my new tube and concluded that it was a combo because it had 2 ports. My previous G-tube also had two ports. One was for doing a bolus feeding with a syringe which I normally do and the other was for connecting to a pump for continuous feeding like they did when I was in the ICU. This new version that had just been installed that morning had 2 ports and one was labeled “nutrition” and the other “medication”. We thought I was going to have to have it replaced yet again because it was the wrong kind. As it turned out this was actually a single normal G-tube with two ports just like my old one but it confused them because it was labeled that way. So I sort of dodged a bullet there by not needing to have the tube replaced again.
Because I didn’t arrive until the middle of the afternoon it really took me the rest of the day to get settled in. My notes don’t say what kind of night I had the first night so it must’ve been uneventful. My second day was much busier so we will leave that until the next installment we in which I saw more therapists that I had ever seen in my entire life.
As I reported in this blog last December, the FDA has approved a new treatment for Spinal Muscular Atrophy or SMA. This is the genetic neuromuscular disease which I have. My particular variety would be considered Type 2. I never walked as an infant but the disease has progressed quite slowly and as I’m approaching my 63rd birthday I’m still alive. The most severe Type 1 makes infants so weak that their life expectancy without extreme measures is a year or two. Some children are living as much as three or four years using trachs, ventilators, and other extensive medical support systems.
The new drug which was approved was only tested on the most severe Type 1 individuals but has been approved for Type 2 and Type 3 as well. The drug is administered by a spinal injection and is extremely expensive costing up to $500,000 the first year and perhaps $300,000 each year thereafter. The disease is caused by a failure to create a necessary protein called the SMN protein. The lack of this protein causes a deterioration in motor neuron cells called anterior horn cells. One of the big questions I’ve had about the new drug is that if these motor neuron cells have completely deteriorated, it would seem to me the most is that any drug therapy could possibly accomplish is to maintain current health levels and not actually reverse the disease. Yet the initial clinical trials of these Type 1 patients have showed not just stabilization but actual improvement.
The big question is what about older patients. I’m not just talking someone in their 60s like myself but let’s suppose you are in your 20s. If you been living with the disease not long, one would expect that these motor neurons would be completely gone. This treatment is not going to regenerate those neurons. Could you really expect any actual improvement or are we just talking stabilization. Also given that the drug is administered by spinal injection and adult patients either have severe scoliosis like I do or they’ve had spinal fusion surgery (which I probably should have had years ago). Either of which make administering the drug more difficult.
It’s one thing to administer an extremely expensive drug to a Type 1 patient for which the disease is most certainly fatal and it’s something else to administer it to a Type 2 patient who could easily expect to live as long as I have or longer. Type 3 while it does leave them severely disabled could expect a normal life expectancy. Is it really worth it if there’s going to be no positive improvement or better outcomes?
In the video below a group of doctors discuss this new treatment as well as possible gene therapy treatments which are currently in phase 1 trials. They asked some of these tough questions about the advisability of using these treatments in adults for which improved outcomes are both unproven and in their opinion (and mine) unlikely.
They also asked a very disturbing yet appropriate question… If a Type 1 patient is not going to have a reasonable quality of life, should we use expensive and heroic measures to sustain that life or is it better to allow nature to take its course? These are very tough questions. I know people with Type 1 children and if I was in their shoes I could well appreciate their desire to do anything to keep their child alive. Still at some point, quality of life issues have to figure into the equation.
The bottom line is we still don’t know enough about how effective the new drug therapy is and we are a long way from knowing about the effectiveness and consequences of gene therapy treatments that are still in very early stage one trials.
In our previous installment I had an emotional meltdown over by inability to talk with the trach. I was facing a wide variety of issues that need to be resolved. Not being able to talk and to participate in the decisions was a real mess for me. When I finally got the talking valve late in the afternoon of December 12, I still had lots of issues to deal with but at least I could now actively participate in those decisions. It’s hard to say that there was any advantage to not being able to talk but the fact that we had to type everything on my iPhone into the Notes app did give me an archived record of everything that I had typed. All of the messages were saved in my iCloud account. Even though I deleted them, they remained in the “recently deleted” folder for 30 days. When I had realized what a resource those messages were for piecing together this blog, I restored all those recently deleted items into a folder called “formerly deleted” and I’ve used those messages to help piece together the story. Put that together with my Facebook posts and I had a pretty accurate blow-by-blow picture of what I had been through. Now that I was talking, there was no more permanent record in the cloud. It’s taken me so long to get to this point of writing the blog that it’s more than three months later so my memory is a little bit fuzzy on details.
Even though I didn’t have the benefit of an iCloud archive, I did seem to have a lot of clouds hanging over me with all the issues that needed to be resolved. Once the valve was in and I could speak I could begin dealing with issues one by one. I suppose the biggest issue was if I was going to need a ventilator to replace my CPAP so that I could sleep. I had proven many times in recent years that I simply could not sleep without a CPAP. For example if there was a thunderstorm and our power was out overnight, I had a backup oxygen tank to replace my oxygen concentrator but I had no way to operate the CPAP without power. Despite my best efforts to sleep under those circumstances I could not do it at all.
On the morning of the 13th I got off of the ventilator and put in the talking valve. Sometime during that day I tried to take a nap without any mechanical assistance. Much to my surprise I was able to doze off for about a half-hour or 45 minutes without the ventilator or a CPAP. That was very surprising. However the experience did tell me that I wasn’t sleeping well enough to really sleep through the night. I explained that to the doctors and they all agreed that yes I did need a ventilator at night to replace the CPAP. They begin to understand that I have been using the CPAP not only to open my upper airway but to assist with keeping my lungs inflated. So then we had to go about the process of getting the ventilator for my home.
There was a woman who was my case manager. It was her job to get whatever I needed to get me home. As I mentioned previously however, the process of getting an in-home ventilator was theoretically going to take a full two weeks. At first I thought the delay was because it took that long to get some sort of Medicare or Medicaid approval. Actually that part was relatively easy. It was just logistics of finding the right durable medical equipment provider and jumping through a bunch of hoops necessary to get the equipment. Among the things they wanted to do was to inspect my house electrical system to see if it was sufficient to handle the equipment. It turns out this was a totally ridiculous requirement. The ventilator doesn’t require any special electrical capability. It probably uses no more current than an ordinary CPAP machine. The problem is that once you say the word “ventilator” it raises the image of someone who is dependent on the thing to stay alive. The image is of a person who will die within minutes if the ventilator fails. It turns out that this ventilator has a battery backup that is good for several hours so even if I was in a life critical situation, electrical failure wouldn’t be fatal. In my case I’m NOT in a life critical situation. In fact I’m less dependent upon the ventilator than I was on the CPAP. However none of that mattered. We still had to jump through all the hoops.
The case manager was initially talking about using a company called Apria Homecare which is one of the biggest equipment providers in the area. Years ago I had got my oxygen equipment from them but they were a little bit difficult to deal with and we ended up changing to a different company. I was willing to go with them despite my previous bad experience so I didn’t say anything against them. Then the case manager came back and said she was going to try a different company that was an independent small company run by a respiratory therapist. I forget the name of the company. I like that idea because I had recently changed to a different home health aide agency that was a relatively small organization. I had felt like I was getting more hands-on attention from a small group that I had with the larger company in the past. So the idea of a small operation for the ventilator provider was attractive to me. Unfortunately somewhere along the way she came back to tell me that we cannot use either of them because different durable medical equipment companies have contracts with Medicaid to cover certain geographic areas. It turns out that I had to use Home Health Depot because they had the Medicaid contract. But we didn’t find that out for a couple of days. That delayed the entire process even further.
The next issue to deal with was that I wasn’t sick enough to be in the ICU and I could not be transferred to a regular room because they don’t allow ventilators on regular medical floors of the hospital. So the alternative was to transfer me to a long-term critical care hospital also known as St. Vincent Seton Specialty Hospital named after St. Elizabeth Ann Seton. She was the founder of the Daughters of Charity of St. Vincent de Paul. They have founded a number of institutions including the St. Vincent Healthcare System. Seton Specialty Hospital was just a couple blocks away on Township Line Road. So we began making arrangements to have been transferred there. It would probably happen on Wednesday the 14th. I asked the doctors directly “If I had all the medical equipment that I needed at home, when do you think I would be medically ready to go home?” The doctor said perhaps two or three days. So that meant I was going to spend 9 or 10 days in this other hospital unnecessarily just because we could not get the logistics of getting me a ventilator at home.
And people wonder why healthcare is so expensive.
The final issue I needed to wrestle with was that I now had a urinary Foley catheter stuck in my stomach instead of a proper G-tube. I made it clear to anyone who would listen that I wanted this issue resolved. I came into the hospital with a proper G-tube that had the proper kind of valve on the end of it. I intended to leave there with the same kind of G-tube. I wanted someone experienced in replacing the tubes. If we had to go down to the radiology department to use x-ray assistance then that was okay with me. In fact I would prefer it. That’s how they’d put the tube in to begin with. We had tried 2 different sets of incompetent surgical residents who couldn’t seem to get a tube in properly. They finally agreed that on the morning of Wednesday the 14th they would take me to the radiology department and replace the Foley with a real G-tube.
Other Loose Ends
In addition to dealing with the case manager, I spent a fair amount of time with the young resident Dr. Heaven. She had really appreciated my emotional state when I was demanding the valve and was instrumental in getting everybody to agree to it. One of the questions I had for her was where was the medical student Brady who had sort of been my other go to guy when trying to resolve problems. She explained that he had taken a few days off to study for his residency exams and then would be taking exams. I was disappointed that I wasn’t going to get to see him again before I left for the other hospital. Fortunately I did reconnect with him later. After I got home, I got an email from him saying that he had found my blog. We swapped a couple of emails and became Facebook friends. He has been following this blog with great interest. By the way he passed his residency exams and was accepted into a residency program in a military hospital in California. He was really looking forward to it. He had been in the military previously.
Sometime on the 13th or the 14th before I left St. Vincent, I had my second conversation with the nursing supervisor about the way I had been treated and my wishes being disrespected while I was unable to speak. I had already recounted that story in previous installments but this is when that second conversation actually occurred.
The Most Interesting Doctor in the World
On the morning of the 14th they took me down to the radiology department to finally replace the Foley with a proper G-tube. They rolled me down to a waiting area that I was familiar with. This was my third trip to that particular department. The first was one time in 2006 when I was in for my intestinal problems. They had inserted a central line in my carotid artery. The other time was last May when I had the G-tube the first time. After a brief wait the doctor arrived. The instant I saw him I thought to myself “I bet the ladies around here are going absolutely nuts over this guy.” He looks like the kind of doctor that you would see on a medical TV show and could’ve easily replaced Patrick Dempsey on Grey’s Anatomy and be given the title “Dr. McDreamy”. He was Hispanic at about 5’10”. He had black hair and a short neatly trimmed black beard and mustache. It was so precisely shaped it almost looked like it had been cut out of black felt or velvet and been glued onto his face. He had on scrubs for pants but he was wearing a tight fitting “UA” brand athletic shirt made of some slick material with lots of tiny holes poked in it. His upper arms were massive it looked like he worked out in the gym eight hours a day or something. In some ways I thought of him like a 35-year-old version of the Dos Equis “World’s Most Interesting Man”.
I will fast-forward till after the procedure when I asked a couple of the nurses if he was really popular and if the nurses had a crush on him. They told me that they probably would have except that he already had a very hot looking wife and a couple of gorgeous young children. That didn’t surprise me at all. I jokingly described him to one of the nurses as “He’s hot enough to turn a straight man gay”. One of the nurses came back with “Or to turn a lesbian woman straight.” We all got a big laugh out of all that. Disclaimer: I don’t really think you can turn someone gay or straight. It’s not a choice. People are wired gay or straight. We were just making a joke about what a hunk this guy was.
Anyway he questioned me why I wanted the tube changed. I explained “Look there are two different kinds of tubes. There are Foley catheters for your bladder and there are G-tubes for your abdomen. They wouldn’t have invented two different kinds of tubes if they didn’t really have a difference to them. I’ve been using a G-tube with a valve on the end of it ever since May and it works out really well for me. The Foley just has a cap with no valve. The stupid surgical residents couldn’t get a regular G-tube put back in. I don’t know what they were doing wrong but it hurt like hell. You need to numb me up so it doesn’t hurt, use the x-ray as a guide, and put in the right kind of tube.” He said okay as if he appreciated the guy who knew what he wanted and wasn’t going to take no for an answer. They wheeled me into the procedure room which was also a very familiar place from my two previous experiences. A couple of shots of lidocaine took care of any pain and the tube was replaced in no time.
I thought that that was the end of it until someone got to looking at the tube and there was speculation that they had put the wrong kind in. A traditional G-tube goes a short distance into your stomach and is used for people like me who have swallowing difficulties. However if part of your problem is digestive, there is a different kind of tube called a J-tube that extends down into your intestine. There is also a combination G-tube and J-tube that is a two-in-one device. Because the valve on the end of this new tube had 2 ports on it, some of the people who looked at it thought that it was perhaps one of these combo tubes. We didn’t do anything about it at St. Vincent but the issue got raised later in the day when I was transferred to Seton. They thought perhaps the people at Seton were going to have to replace it again. As it turned out it was not a combo tube. It was just a regular G-tube with 2 ports. It did not need replacing again and the tube has worked flawlessly ever since then.
The rest of the afternoon was sort of a “hurry up and wait” situation. I was going to travel by ambulance from St. Vincent ICU to St. Vincent Seton Specially Hospital but we didn’t know exactly what time it would be. I was one of 2 patients who were going to make the same trip. Of course it always takes a lot of paperwork to discharge someone. Transferring them to a different hospital is no exception. And to have 2 patients from the same department making the same trip also kept the nurses very busy. Eventually it was my turn. They loaded me onto a gurney and wrapped me up in a bunch of blankets. The ambulance trip took only five minutes or so. Getting in and out took longer than that. My notes tell me that I posted on Facebook at 5:19 PM that I was settled in to room 207 of St. Vincent Seton Specially Hospital.
That essentially wraps up the story of “The Man with No Voice”. It was most definitely the most emotional and stressful hospital experience I’ve ever had. The repercussions of it will carry well into the rest of my life. However I think the story of my adventure at Seton is sufficiently different that it is a story unto itself. It’s not nearly as dramatic and there will not be as much detail to talk about. I will get to work on writing it very soon. The brief story is that I spent from the afternoon of December 14th until December 28 at Seton. It did take exactly 2 weeks to get the ventilator ready for me to go home. If not for the logistical nightmare, I could have been back home within a few days.
I still am amazed at how differently I was treated when I couldn’t talk. I’m still a bit haunted by the fact that there are many, many people who face these challenges every single day of their life. I struggled with it for a little more than a week and it nearly drove me nuts. I spoke of the surprising level of commitment and support from my friends in the maker community especially those at Adafruit Industries. One of the consequences of this experience was that I was recommitting myself to developing adaptive technology not just for myself but for other people. For example for months I had promised to write a tutorial about how to do switch control using an Adafruit Bluetooth device and an iOS device such as iPhone or iPad. One of the very first things I did once I had settled back in at home was to finish that tutorial. I’ve also connected with another group called ATmakers.org which is run by a man named Bill Brinko. His organization is working with high school STEM programs to encourage kids to use their science, technology, engineering, and math skills to assist disabled people with their assistive technology needs. I now have a very deep commitment to make sure that everything I know about assistive technology gets passed on to other people who can make use of it. The folks at Adafruit have also taken up assistive technology as one of their pet projects. They are working with me and Bill to develop new devices that will be of use to the AT community. Now that I have my voice back, I’m using as much of it as I can to give voices to others who have no voice.
In our previous installment I talked about a Facebook posting I had made on the afternoon of December 11 which was very upbeat. It was just a few hours later however that everything fell apart. A series of unfortunate circumstances came at me rapid fire and led me on a downward emotional spiral that was the worst of the entire hospital experience.
The 11th was a really good day. I had been off of the ventilator most of the day. Dad had brought in my laptop because I thought perhaps I could operate it using my ultimate remote Bluetooth device. It would’ve had a bigger screen than typing on my iPhone. As it turns out I discovered the on-screen keyboard built into Windows 10 wasn’t nearly as useful for switch control as was the iPhone. So I had dad pack up the laptop and told him via iPhone message that once I got that talking valve in and could use my voice control I would switch back to the laptop. I was just about to tell dad to switch the TV to AMC channel before he left so that I could watch The Walking Dead. Then things started going wrong.
My John Hurt Experience
In the classic 1979 sci-fi film “Alien”, the advertising tagline was “In space, no one can hear you scream.” The most memorable scene of course was when the character played by John Hurt suddenly starts having a convulsion and spitting up blood at the dinner table. His fellow astronauts swipe all of the food off of the table and lay him out. His stomach starts bulging and a small alien creature bursts through his abdomen spraying blood everywhere before scurrying off to the hidden recesses of the spaceship.
My experience fortunately wasn’t anywhere nearly as bad but I was put in a position where I had horrible pain in my belly and I couldn’t scream.
It started when I noticed something wet on my belly. I thought perhaps I had missed peeing in the urinal that I kept propped up between my legs. I asked dad to check the urinal. It was in the proper place but he soon noticed the cause of my unexpected wetness.
My G-tube had come out of my abdomen.
A G-Tube is a rubber tube that goes through a hole in my abdomen and sticks into my stomach for feeding. I had had one since the previous May because it became too difficult for me to swallow food normally. The G-tube is held in place by a small inflatable balloon on the inside that keeps it from pulling out. However if the balloon bursts, there is nothing holding it in place and it just pops out.
A couple of months earlier, we had accidentally gotten the tube tangled up in my covers and when I rolled over in bed, we yanked it out. We stuck it back in temporarily but had to go to the ER to get it replaced. Since then we had been very careful not to get the tube tangled up in anything.
Unfortunately one of the many consequences of not being able to speak was that I could not warn people if the tube was getting tangled up. Over the past several days there had been many times when it had been yanked upon pretty severely. At that point I wasn’t surprised that it came out. I was more surprised that it had stayed in that long. Usually the tube hangs out of me about 6 or 8 inches and we pump the formula into it using a large syringe. But in the hospital they had kept me connected to a pump machine with a long tube. On several occasions, one quite memorable, a respiratory therapist had gotten tangled up in it and it had gotten yanked. I hadn’t said anything to anyone because it seemed to be holding up.
So when Dad discovered that it had come out again I was frustrated but not worried. I don’t recall if we temporarily put the tube back in or what we did to keep me from leaking further. The bottom line was they sent for some surgical residents to come in and replace the G-tube. It had gone smoothly in the ER a few months ago when Dad and I had pulled it out. I didn’t expect any complications.
Unfortunately these residents didn’t seem to know what they were doing. I think they were using a larger diameter tube than I had used previously. They kept trying to jam it in but it wouldn’t fit. The pain was phenomenally bad! And the worst part was, I couldn’t even grunt or yell or do anything to let them know how much it hurt. It had been bad enough the past several days that I could not talk. Now I couldn’t even yell or moan when I was in excruciating pain. I felt like I was living in outer space and no one could hear me scream.
One group of residents gave up and another one came in later. They had decided that as a temporary measure they would insert a Foley catheter. Foley catheters are normally used for your bladder. However like a G-tube they are small rubber tubes with the balloon anchor on the end of them. Foley’s come in lots of different sizes and so they searched around to find a small gauge pediatric version hoping that it would go in the hole easier.
Unlike the G-tube however which has a valve on the end it makes it easy to fill, a Foley catheter just has a cap which you can close when not in use. I presumed this was just going to be a temporary fix until they could do it properly. Fortunately the Foley catheter went in much easier and painlessly. Well… not 100% painlessly because I was still pretty sore from the previous botched attempt. But things were okay for the time being.
To Sleep… Perchance to Dream
Dad had to leave before they got the Foley inserted but I told him he could go. I have an archived iPhone message where I told him to turn the TV on AMC channel so I could watch The Walking Dead and I told him to tell the nurse I was ready to get back on the ventilator. I was hopeful that I would not have any more personal drama for the evening and could just watch some good juicy zombie stuff on TV. Unfortunately there was more drama in my life to come that evening.
Since I had had the trach installed on December 7, I spent most of my time connected to a ventilator. The plan was to gradually wean me off of the ventilator and eventually install a device called a Passy-Muir valve that would allow me to talk normally. I had always presumed however that I would still need the ventilator at night in order to sleep. For 25-30 years I had been totally dependent on a CPAP machine in order to sleep at night. There was no way I could get comfortable and breathe well enough to get to sleep without some sort of respiratory support. When I had first agreed to the trach, I presumed possibly there was a way I could use it with my regular CPAP. I should’ve asked but I didn’t.
On the evening of the 11th when I was ready to get back on the ventilator so that I could go to sleep, the respiratory technician didn’t want to do it. He said that the goal was to get me off of the ventilator as much as possible.
I could not have been more blindsided. Nobody had ever indicated to me that I would be expected to be COMPLETELY off of the ventilator especially since I had been so dependent upon the CPAP. They tried to explain to me that the CPAP was designed to keep your upper airway open. It keeps your throat and upper airway from closing. When it closes it causes you to stop breathing. That is what they call sleep apnea. Because I had the trach, I would not be breathing through my mouth or nose anyway so theoretically I didn’t need the CPAP.
However even though I needed the CPAP to keep my upper airway open, I was also using it to assist me keeping my lungs inflated. In many ways I had been using the CPAP as if it was a ventilator. I needed it to get volume in my lungs. Of course trying to explain that in an iPhone message typed using switch control was nearly impossible. Here’s all I was able to say…
At home I’ve been on cpap for 30years
I I need it or I will never be able to sleep without it .
I don’t use cpap for snoring . I need it to kee
We will figure this out tomorrow
In between each of those sentences lots of other people were saying lots of things and I couldn’t participate much in the discussion. The bottom line was they agreed to put me on the ventilator at least for one more night.
As if I didn’t have enough problems, sometime during the night that night, my nurse call switch quit working. Fortunately I did not need it much during the night. The nurses were in and out and I slept as best I could although my mind was racing and I was getting very furious and very upset. The inability to talk was just too much for me to handle. The pain from the botched G-tube insertion, the argument with the respiratory people over the ventilator, it just all was weighing down on me too much.
Planning to Leave
I don’t recall how well I slept at night and I don’t think it was very well. My mind was racing about all of the things going on. I had decided that I need to put my foot down and get on that talking valve right now. There were too many things going on that I needed to talk about. Amidst all this on the morning of the 12th we had a visit from a woman who was my case manager. It was her job to prepare me to get out of the hospital and to give me whatever support I needed once I got home.
I was getting well enough that I really didn’t belong in the ICU. However they have a rule that on a regular medical floor you’re not allowed to have a ventilator. So they could not move me from ICU to one of that regular floors. The alternative was to move me to a different hospital called St. Elizabeth Ann Seton. Actually the technical name is “St. Vincent Seton Specialty Hospital”. It’s located just a couple blocks down the street from the regular St. Vincent Hospital where I was. While I would’ve preferred to stay in regular St. Vincent, if the rule was there could be no ventilators on the regular floors I really didn’t have a choice.
We also discussed (or rather they all discussed in a way that I could not participate) the fact that I was going to need a ventilator when I got home. According to the case manager, the process of getting a home ventilator takes 2 weeks minimum! At first I presumed that delay was to get Medicare/Medicaid to approve the device. I thought that was insane. When I needed a CPAP they just called up a medical supply place and said “Get this guy a CPAP” and it was there in no time. I later discovered that the delay wasn’t necessarily the insurance issues. It was a whole complicated process where they have to come to your house and make sure that your electrical system is okay, train your family members to operate the equipment, the whole thing was a mess.
At one point I got a visit from Dr. Chad Davis. He had been the surgeon who had done my bowel resection back in 2006 as chronicled here
I really liked Dr. Davis as you can read in those previous articles. He was there to report on my G-tube situation. The previous night after they got the Foley catheter inserted in the G-tube hole, they had taken an x-ray to make sure that it was in the proper position. He had read the x-ray and came in to tell the nurse that it was okay to start using the Foley to feed me. The nurse looked at him like he was crazy. We had already heard the results of the x-ray and I had had 2 feedings already. The nurse said to him “This Foley is just temporary right?” Much to my surprise and disappointment he said “No… It will be okay. We can just leave it in.” My reaction runs “Like hell you will!”
This G-tube versus Foley situation only furthered my frustration that I could not discuss these issues. Decisions were being made with little or no input from me and that’s not the way I operate. I was depressed, angry, frustrated… there are not enough adjectives to describe what I was feeling. So I went about composing several messages. Here are the contents of those messages courtesy of my iCloud archives.
Here was a message I wrote to dad when he arrived the morning of the 12th…
News from over night
I took more laxative last night and it will kick in sometime today so be aware.
Surgeon says folly cath in stomach is not temporary but I want it replaced with proper kind
Here are series of messages that I wrote expressing my anger and frustration.
Note for doctors. Nurses, everyone,
I need to be able to talk. Too much going on and I can’t deal with it by phone! I’ve got to be able to talk as soon as possible! Everything else can be resolved once we get me TALKING!!
If you’re wondering “is he pissed off?” The answer is YES.
Sorry. I’m not blaming you or anyone. I just need to discuss too many issues that can’t be resolved by twitter-like messages.
Can we rig something temporary such as finger in hole just so I can discuss issues?
issues I need to discuss with doctors
I’ve already said I want to talk but if I can’t then I will have to type. I’m preparing multiple messages in case we can’t get me talking but these messages don’t fully address my concerns. That is why I want to talk.
I’ve been on cpap over 25yrs and experience says I’m totally unable to sleep without it. I’m aware its primary role is open upper airway but I feel I’m also using it to keep my lungs inflated. Its hard for me to believe that I could sleep without mechanical assistance. I feel that the cpap has been working as more of a vent and I’m dependent on it. I’m willing to try sleeping without vent or cpap but I’m highly skeptical. I hope to try it nap this afternoon but ironically I slept really well last night.
issue #2 vent
I did all afternoon yesterday but required multiple trach suctioning throughout the day. I’m doing well today but still need trach suction from time to time. Do you have concerns that my need to suction is still ongoing?
Issue #3 G-tube
Last night I believed that use folly was temporary but the surgeon Dr.Davis said it can stay. I’ve had him before and I like him but I don’t agree with hims this time. I really want a proper g-tube of appropriate length and diameter and with a valve like I had when I came in here. I’m willing to go down to radiology if needed. Last night surgery residents hurt like hell jabbing around blindly.
I’ve taking things one day at a time but I feel blinded by some of these issues (such no more cpap). I need it discussed completely so I’m prepared. After I began writing this the case manager came in and raised a dozen issues that had not yet been discussed. This is why I need to talk.
I think the main person who read all of these messages was the young female resident Dr. Heaven. She took the time to read the messages and she understood that I was really serious about all these issues. The nurses were also well aware that my whole attitude had changed. One of them actually expressed concern that I wasn’t my usual cheerful self. I have written a separate message that repeated that line about “If you think that I’m pissed off then you are right.”
The nurse said I needed to be able to look out the window to cheer me up or perhaps to watch some TV. I found some time to write her a message as follows.
I have to giggle when you say I need a window. You should see my office at home. One window mostly closed. I like my man cave 😀
Regarding TV I’m too busy frantically writing notes because even once you get them here I’m not confident they will let me talk. 😠
That last line reminds me that Dr. Heaven had asked for the other doctors possibly the attending doctors to come in and talk about getting me the talking valve. At some point the attending doctors did come in and they agreed that we could try the valve. My recollection was that it was perhaps 1:30 or 2 PM before they arrived. Then they needed to write orders to the respiratory therapist to actually bring me the valve.
Meanwhile I had other issues to attend to. Some of the nurses were having a difficult time using my message board. They would point to each letter one by one rather than using rows and columns. So spelling messages to them was getting really difficult. Even if I was going to have the talking valve soon, I was still going to need the communications board at night when I was on the ventilator. I wrote dad the following message.
When you get a chance you need to show nurse how use the letter board. She has been pointing to every letter. Show her how we pick the row before picking letters.
She needs to train night nurse how to use board
There were a series of other passages that showed how inpatient I was becoming.
Can you see what going on?
Docs said they would call RT an hour ago
very anxious to try valve
lots decisions being made and I need to weigh in. Hard to do without talking 😀
I’m not sure if that last message was to my dad, a nurse, or Dr. Heaven. It was the last message that I wrote on my iPhone on December 12. In a Facebook message I also expressed my frustrations. In a message posted at 1:26 PM I said “doing well today but being unable to talk means can’t properly participate in planning. The issues are too complicated for brief messages I’ve been typing on my phone to my doctors”
The Prayer Request
I think it was about now that I decided to send some text messages to Judy to ask for prayers. So we have come full circle. This was the point in time that I talked about in the very first installment of this story. The first of two messages said
I’m feeling wonderful physically but not talking is looping me [out] of important discussion. loud noise from south side is my mom spinning in her grave 🙂
Judy said she literally laughed out loud when she read that. I then followed that up with the following message.
I’m been raising hell all day with some minimal progress.
Pray that they listen to the man with no voice.
In case you forgotten, you might want to go back and reread the first installment of this series which you can find here… It describes my emotional state on Monday, December 12 at 3:36 PM when I wrote those words. Basically when I reread what I had just written it shocked the hell out of me. It’s so perfectly described the sense of despair and isolation that I was feeling at that moment.
The next text message to Judy said
This whole situation is a mess but on okay. Hugs
That’s all I care about… your feeling better. The messes will be resolved. I will pray for patience and peace to you. Love.
There’s a saying that says “God always answers our prayers. Sometimes that answer is ‘No'”. Fortunately for me this time the answer was “Yes”. I don’t know exactly what time it was, but very shortly after that text exchange I sent her the following text message.
Just got “talking valve”! Damn your prayers work fast!
At 4:30 PM less than one hour after my desperate prayer request I posted this on Facebook.
Shortly after that Carol walked in and about freaked out when I said “Hello”. She was so surprised and relieved that I was talking. Soon thereafter dad left because he liked to get home before it got too dark. I had Carol grab my iPhone and we went on Facebook live to post the following video.
Before Carol left at about 7:30 PM we always had a series of things that I would ask her to do before she left. She would move the iPhone out of the way and plug it in to the charger. She would make sure I had my call button in my hand and my hand was propped up properly. We would have to get the TV on the right channel. Get my little “Chris Young users manual” properly in place where nurses could discover it. In the past it had taken us maybe 15 or 20 minutes to do all of this because I was typing instructions on the iPhone to tell her what to do. Now that I could talk, we were able to get everything organized for her to leave for the day in just a couple of minutes. The difference was amazing.
I would like to be able to say that finally being able to talk resolved all my problems but it didn’t really. I still had the wrong kind of G-tube in my belly. I was still facing the fact that I didn’t belong in the ICU but could not be moved to a regular room because I don’t allow ventilators. I still had the issue of when I need the ventilator in place of the CPAP at all or were they correct that now that I had the trach I didn’t need anything else to sleep. And if I did need a ventilator at home, it was going to take 2 weeks for me to get it. But at least now that I could talk, I can start resolving these problems one by one.
Our next installment of the story will probably be the last in the series. It will recount my final day at St. Vincent Hospital and my transfer to Seton Specialty Hospital. I will then start an entire new series of articles about my recovery at Seton Hospital. That story will not be nearly as dramatic or stressful as this one has been. It’s time to wrap up this story about the man who couldn’t speak. Because obviously… Now I can!
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”.