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 would 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 email@example.com and they will send you a free sticker saying “As seen on show-and-tell” to proudly display on your project. I’ve appeared on the Show-and-Tell program over 20 times since December 2012.
Lady Ada says that her real goal is to teach electronics to people of all ages and all levels of experience. They have a tutorial section called https://learn.adafruit.com with over 1000 tutorials. She says “We are not an electronics supplier. We are an educational service with a really big gift shop.” Everything that they design for sale is completely open source. That means that if you wanted to, you could download the schematics, board layouts, and software for everything that is their original products and build it yourself from scratch without purchasing it from them. You will see no “patent pending” or patent numbers on anything they design and sell.
I’ve written several tutorials for them to share some of the work I’ve done mostly in the area of infrared remote controls. I also designed a cell phone booster battery project with a 3D printed case that I call “Printy Boost“. It’s a bit of a pun based on an early Adafruit project that did the same thing but was stored in a Mentos mint gum package. It was called a “Minty Boost“.
Lady Ada and Phil also host a one hour show after that “Show and Tell” called “Ask an Engineer” in which they talk about new products, news from the maker industry, the latest tutorials they published, a history of science and maker issues, and it’s all wrapped up with a Q&A session where you can ask technical questions of the engineer Lady Ada. In addition to these programs she also hosts live streaming video called “From the desk of Lady Ada” in which you get to follow her thought processes as she designs and tests new products. That particular program is streamed live from their apartment in the evenings and weekends.
How they are able to do all of that and still manage a big company is a mystery to me. Oh I’m sure they have middle-management people and finance people etc. handling some of the day-to-day operation but for the most part they are both very hands-on in the running of the business while maintaining this very public and personal connection to their customers.
They are extremely socially conscious people who treat their employees like real partners. They pay them good wages with good benefits. They paid them throughout the time off they had to take when hurricane Sandy shut down the business for several days. Not only is Martin Luther King day a paid holiday and they are encouraged to make it a day of service, employees are given up to three days paid leave per year for them to do volunteer work with any certified 501.c.3 charity.
A few months ago I got inspired to write a parody of the opening number from the musical Hamilton but my version was about “Lady Ada Limor Fried”. Like Hamilton she is a tireless worker who is a self-starter who has done amazing things. You can read my parody here.
Whenever I’ve appeared on the show and tell, they seemed especially fascinated with the idea that I am putting their products to use for really practical purposes. That something I always emphasize when I make a presentation. While the little toy trinkets and the blinking lights and the cosplay props are all fun and educational ways to spend one’s time, I always remind them that the gadgets that I build make my life better every day. The infrared remotes that I built give me access to every cable box, TV, DVR, VCR, and DVD player in my house. I would not be able to operate these devices without the gadgets I built from Adafruit parts.
I use my 3D printer not only to build silly little toy robots and action figures but I also used it to build the joystick mount that allows me to drive my new custom wheelchair. The fact that I’m using their products to solve real-world problems has not gone unnoticed. At the beginning of the Ask an Engineer program they always give a recap of the projects that were displayed on the previous Show-and-Tell earlier that evening. They’ve taken the time to make special note of some of my projects and praise them for the fact that they are very practical uses of the technology.
I’ve written a number of emails and spoken to them online to express my gratitude for all that they’ve done for the maker community in general and to me in particular. I remind them that the gadgets I built using their parts make my life better every day. But it occurred to me that this situation had been taken to a new level. My “Ultimate Remote” that I built from Adafruit parts that gives me access to my iPhone wasn’t just being used to post cute messages on Facebook or to crush candy or other trivial things. It was my major means of communication with doctors and nurses during what could have been critical medical times. This communication contributed to keeping me alive during a very serious illness.
I felt the need to thank them one last time. Even though I didn’t think at this point that I was dying, there was always the chance I could take a turn for the worst and I didn’t want to leave anything unsaid. Just a few days ago I thought I was on the mend and didn’t ask Fr. Paul to give me the sacrament of the sick. Two days later I was in surgery getting a tracheostomy. So even though I was doing much better, I knew that things could get worse again very quickly. So I dropped an email to Phil the afternoon of December 9 at 2:31 PM that read as follows…
To: Phil Torrone
Subject: I’m in the hospital
Hi Phil and Limor,
Chris Young here. I have pneumonia and I had to get a tracheotomy so for now I can’t talk. I am using this device built from Adfruit parts. http://tech.cyborg5.com/2016/01/20/the-ultimate-remote-control-and-why-i-built-it/ to type messages to doctors and nurses on my iPhone. I’ve told you before that Adafruit products make my life better every day but now they are helping to save my life. I’m hoping to recover but I’m in pretty bad shape. I want to tell you that you are both a great blessing to me. You have treated me like a friend and colleague rather than a customer. I will treasure this always. I’m not giving up because I still have projects to show and tutorials to write. While I had the chance, I just wanted to drop you a note to say thank you just in case I end up meeting my Maker 🙂
Again while I didn’t think I was at the moment on death’s door, I understood that there would had ups and downs and there was always the possibility I could take a turn for the worst. Also I thought it was a really good pun when talking to people who were “makers” about meeting your maker.
Within 2 minutes I had a reply…
our thoughts and best wishes are with you, the world is a better place because of you and you’ve been so special to us.
which hospital are you at? is there anything we can send you or do?
thank you for being a bring light in our lives no matter what and where this life takes us.
pt and limor
I wrote back and said simply “Your good wishes are all I need.” It was great to hear from them and I had said what I needed to say. I thought that was the end of it. Maybe I would send them an update now and then and I would have stories to tell next time I came to the weekly show and tell. Actually a few days before I got sick I had planned to attend a show and tell to talk about some modifications I had made to my 3D printer. Unfortunately that night there was a problem with the Google hang out infrastructure and the program had to be canceled. So at least I needed to show off that 3D printer modification as soon as I got back home.
The Phone Call
December 9th was a Friday. My sister Carol came to visit around 5 PM and dad went home for the day. My friends Rich and Kathy Logan also dropped by to visit. I will tell more about their visit later. While we were all talking (rather they were talking I was trying to communicate by yes and no and an occasional message typed on the iPhone) one of the nurses came in and said “We’ve got a phone call from someone inquiring about Chris. Of course we aren’t allowed to release any medical information but I told him he could talk to a family member. His name is Phil.” Carol, not knowing who it was, agreed to talk to him anyway. She picked up the phone in my room.
I could not believe that somehow he had tracked me down, figured out what hospital I was in, and made a phone call to see how I was doing. Carol talked to him for several minutes and he gave her his private phone number and she gave him her phone number so they could keep in touch if something happened to me. He explained to her who he was and that he had gotten email from me about being in the hospital. He heaped all sorts of praise on me about how wonderful I was and how much they appreciated everything I had done for the maker community. He went on to say that if there was anything I needed that I should just ask. He said “nothing is too big or too small to ask”.
Rich suggested it was a great opportunity to hit them up for some expensive gear. Maybe I needed a better 3D printer or a CNC machine 🙂 When you have the owner of a multimillion dollar company telling you that you have a blank check, you’ve got to cash that sucker in. I’ve told the story to other people and they all agreed I should hit them up for something big while I had their sympathy and concern.
The truth was I already had way more from them than I ever expected. I felt guilty that I had laid there in bed and wondered if I would be missed or how much I might be missed if I never returned. I felt guilty for wondering if I had created any kind of legacy for myself in the maker community. I know that lots of people make use of my infrared software libraries that I publish. Several people have thanked me for designing the Printy Boost. I’ve got some positive feedback from my show and tell presentations. And I’ve always felt affection from Lady Ada and Mr. Lady Ada (as Phil is often called). But I had no idea the depth of that affection and appreciation that they and the entire community had for me. You can buy 3D printers. You can’t buy that kind of support.
I wrote him back saying I couldn’t believe he had tracked me down and called the hospital. I said “I can’t believe that you called yesterday! I’m so flattered. You have a multimillion dollar company to run and don’t need to be worried about me.” I went on to say he can keep in touch with my progress by following me on Facebook. All of my posts are public so you don’t need to be on my friends list to read them. You do not even need to be on Facebook yourself. He asked if it was okay to share my stories with the team at Adafruit. I said sure… Just like my projects I’m open source.
A few days later, I sent him an email telling him the good news that I had the talking valve on my trach and could finally speak again. I said that that means I would not have to resort to “Maker Charades” on future show and tell visits. “Maker charades” is what they call it when someone joins the show and tell but their microphone is not working. They just hold up their project and point and gesture to show it off. I was glad I would not have to resort to that but it was good to know they already had a way to let people participate who could not talk. I concluded that email with the phrase “Anyway thanks for your support. I believe in prayer, well wishes, good vibes and all forms of spiritual support.”
That last sentence seem to have a big impact on him. Although that email and the “meet your maker” line from earlier revealed me to be a person of faith, it showed that I respect and appreciate the support of people who are not necessarily religious. And in the long run I sensed that Phil perhaps realized that there’s nonreligious well wishes and good vibes had had a positive effect on my recovery.
To jump ahead in the story a little bit, a couple of weeks later on December 21 while still in the hospital, I joined the Wednesday night show and tell just to say thanks to everyone for all of their support. I used the WebCam on my laptop to login. Here is that video. My segment starts at about the four minute mark…
I mentioned that after the weekly show and tell, there is another program called Ask an Engineer and among the features of that program is a recap of what happened in the just concluded show and tell program. Although I did not watch the following Ask an Engineer live that night, I did go back a few days later to see what they had to say about my visit. During that segment there was a sentence from Phil that said something like “as we told you about last week…”. That was the first back I realized they had talked about me at the previous week’s Ask an Engineer. So here are some links to those videos. I’m still blown away by the support I got from them.
This is the Ask an Engineer from 12/14/2016 which was the first show after my email to Phil and his phone call to me. It is queued up to the 14:21 mark of the one hour program at the point where they start talking about me.
The segment is about two minutes long. At one point Lady Ada says “It’s never too late to tell the people you love how much you care about them.” And that was the entire point.
After I appeared on the show and tell from my hospital bed on 12/21/2016 this was what they had to say in the recap during the Ask an Engineer.
Phil mentioned that they sent me a get well video. It was a private video they took during one of their company meetings that they have each week. It was just a whole gang saying “Get Well Chris!” And lasted just eight seconds but it was wonderful that they took the time to record that for me.
Again to skip ahead in the story, the following Wednesday 12/28/2016 was the day that I got home from the hospital and did not have time to stop by show and tell. As it turned out they took the day off for the holidays and there was no show and tell that night. The following week on 1/4/2017 I appeared on the show and tell from home. I got to show off my 3D printer modifications that I had intended to show off right before I got sick. My segment starts at about 3:15 minutes in.
I’ve already started designing a new version of my ultimate remote that will make it even easier to communicate if I lose my voice again. I’m also working on a tutorial for the Adafruit Learning System that talks about how to control an iPhone or iPad device using switch control and Bluetooth devices made from Adafruit parts. That way anyone else who wants to build a device like mine will be able to do so with complete instructions, schematics, and source code all given away for free as open source.
At least three or four times during my hospital stay various doctors and nurses would marvel at my little technological gadgets. They would say something like “You ought to patent this and make a bunch of money off of it.” Then I tell them that I publish my designs open source so that anybody can re-create what I do for nothing but the cost of the raw materials. They are always a little bit embarrassed that their first reaction was a greedy “You should make money off of this” and my response is so much more altruistic. The embarrassment on their faces is priceless.
From a secular point of view… The support of a community of friends, the knowledge that you are appreciated, and the realization that you have a mission to complete to share your knowledge with the world and that it will be appreciated… That goes a long way to boost morale and give one a will to live.
As I told Phil “I believe in prayer, well wishes, good vibes and all forms of spiritual support.” This entire story explains why that belief is well-founded.
We are now up to Friday, December 9th which turned out to be a but very busy and eventful day. It’s probably going to take me two or three blog entries to cover the events. The first thing on the agenda that morning when dad arrived was that we wanted to try to shave me. Unless I’m going somewhere public, I typically only shave every two or three days just because it’s a hassle. I had been in the hospital for six days and I really don’t remember how long it had been prior to that that I shaved. So I was getting very grungy.
Because my neck is so short it’s hard to get a razor under my chin. It’s even more difficult to do so when I’m lying in bed. With the help of a nurse, dad raised me up in bed and stuffed a pillow behind my back so that we could tilt my head backwards and he could shave me. Even though they had been giving me a bed bath every day they didn’t always wash around my neck very well. So the first thing we did was have the nurse thoroughly wash my neck and get around the trach tube carefully. We laid a wash cloth over the opening to my trach while dad shaved me with my electric razor. It was a very awkward position but we managed to get me shaved. It felt good to get all of that off of my face. I almost felt like a human being again.
Unfortunately in the process I’m pretty sure we did something to kink my back. Later that night I had pretty severe back pain. When I get that pain I’ve been taking a pain pill called Tramadol but when I tried it that night it was not enough. I ended up having to take Fentanyl which is a pretty strong narcotic.
The other bit of “cleaning up” that I got that day was a visit from the hospital chaplain priest. When Fr. Paul had visited me a few days earlier I had not asked him to give me the sacrament of Anointing of the Sick because I thought I was on the mend. But when it became obvious I was going to have trach surgery and I was still a long way from full recovery I had asked the chaplain to send the priest to give me the sacrament. This isn’t necessarily because I thought I was dying. You can get the sacrament anytime you are seriously ill. I don’t recall the name of the priest who came by but he gave me the anointing. I had pre-typed a message on my iPhone that was a sentence or two of confession. He read the confession but said don’t worry about it that an anointing is just as good as confession. I had heard that before but I thought I would go ahead and mention a few things that had been on my conscience. That’s one message that I completely deleted and did not recover on my iCloud archives. Afterwards I posted a message on Facebook saying “Just got anointed by the priest, let the healing begin!”
As I had done the day before, they tried taking the off of the ventilator and letting me just breathe normally through the trach. The day before I had been off for several hours and only needed to be suctioned perhaps twice. This day I was in much worse shape. After only 15 or 20 minutes off of the ventilator I needed to be suctioned with a catheter. I thought I was cleaned out but after another 15 or 20 minutes I needed it again. It was just too much of a hassle if I was going to need that much suctioning. I decided to give up and we called the respiratory therapist to put me back on the ventilator for the rest of the day. It was a very frustrating and disappointing day for trying to get clear of the vent.
Here We Go Again
Disclaimer: I’m going to be brutally honest in this next section about my thought processes. I’m likely to come across as an insensitive, misogynistic, male chauvinist pig. I don’t really think I’m any of those things. I love women. I respect women. I enjoy looking at attractive women. The hard facts are I’m a 61-year-old horny old guy. That doesn’t mean I only see women for their physical attributes. I don’t believe I objectify women. Any of my female friends who can say they’ve seen a hot looking guy walk by and they NEVER took an extra long look at him and wondered what a physical encounter with him might be like… then they might be able to sit in judgment of me. But all of you other ladies who have ever done any guy watching… don’t judge me.
I mentioned previously that when I need to suction the trach with a catheter it had to be done by an RN. One of the times that I needed to be suctioned that morning, my regular nurse who is familiar with me was not available so they rounded up someone else to do it. This nurse who I had never seen before was actually one of the hottest nurses I had seen since I’ve been there. She was very tall, athletic build, light brown hair with blonde streaks in it, probably 40 years old or so. I’m a bit embarrassed to say that if I had to describe her in one word it would be “MILF”. I know that’s a very misogynistic, chauvinistic label to apply to a woman but I mean it with a great deal of respect. I don’t think the term (at least as I apply it) objectifies women. It simply expresses that I found her to be a mature woman who was very attractive in a physical sense.
She did a competent job of suctioning my trach tube and then she looked at me and said “You are slumping down in the bed. We need to scoot you up higher.” The problem was I had just recently gotten comfortable in that position. I had already been twisted and turned in unusual ways to try to get me shaved earlier. My back was hurting unless I would sit just right. I definitely did not want to be moved.
The nurses are rightly concerned about pressure sores developing on my rear end. However in my experience some of the things they do to alleviate pressure actually cause me extra pressure. If they grab you under the arms and slide upwards to keep you from slumping, your natural tendency is to slip downwards again. But you’re butt naturally doesn’t want to slip on the sheets as your body is trying to slide down and forward. It creates a sheer force on the soft part of your buttocks and on your tailbone. That sheer force on your rear end risks more pressure sores rather than alleviating them. I do much better if I’m slumped a little bit even though I look strange in that position. Add to this the fact I have very severe scoliosis and I was in bed without my back brace. That makes me look even more slumped than I actually am.
When she suggested scooting me up in the bed I began giving my “No” signal indicating that I did not want to be moved. I was certain that she understood my signal because she argued back at me insisting that I needed to be moved. At one point my dad said to her “He’s saying ‘No'”. It was to no avail. With the assistance of one of the patient care techs they grabbed me under my arms and pulled me up higher in the bed.
They didn’t hurt me. But they moved me out of a very comfortable position into an uncomfortable position for no good reason and over my explicit objections.
In what I called “The First Incident” I was absolutely furious and a little bit scared. In this second incident I just felt frustration, disappointment, and a sad feeling that it had happened again. When something happens one time you can write it off as an isolated incident. But when it happens again you begin to realize that this is just the way things are for people who cannot communicate and who are dependent upon caregivers.
I thought about getting on the iPhone and writing a really angry message and then getting someone to bring her back to read it. But I just did not bother. I guess I would just have to make another appointment with the nursing supervisor and issue yet another complaint.
I think part of it pissed me off that I had found her attractive and then she turned out to be such a bitch. What gave her the right to violate me in such a way? Just because I thought she was hot doesn’t mean I would’ve run up and grabbed her ass if I had the physical capability to do so. I’m not a misogynist, chauvinist pig. I respect women. I understand the concept “no means no”. All I could think of was God help her if she ever ran into a guy in a dark parking garage who had her same disrespect for the meaning of the word “no”.
Okay now you’re going to say how insensitive I’m being by equating sexual assault to getting my ass moved in the bed. That’s not what I’m saying. I’m saying that “no means no” in all circumstances big and small.
We will fast-forward to Tuesday or Wednesday the 13th or 14th when I was able to talk again using a special talking valve on the trach tube. I asked to speak to the nursing supervisor and complained again that one of her nurses had ignored my refusal to submit to something I thought was unnecessary and had no true medical purpose. I reiterated to her that it wasn’t like I was some sort of Alzheimer patient who didn’t really know what was going on. That I had the right to determine what did or did not happen to me as a patient. In this instance I was able to communicate that I did not want to be moved. I was not able to communicate a lengthy explanation why. But I should not have needed to. I said to the supervisor clearly “I understand the concept of ‘no means no’ and that I would think that a woman would appreciate that and treat me with the same respect that women expect from men.” I did make it clear to the nurse yet again that I had not been physically hurt nor psychologically scarred but I felt violated nevertheless. She agreed it was unfortunate situation that would be addressed again.
The Bigger Issues
There is a natural tendency to see someone with a physical disability and somehow presume some sort of diminished mental capability as well. That unfortunate presumption multiplies a hundredfold when the disabled person cannot speak. My late friend Christopher Lee whom I’ve spoken of earlier in this blog had an experience where he was sitting somewhere in a public place in his wheelchair with a lap tray on. Someone walked by and place money on his tray as if he were some sort of beggar. It was just a dollar or so. The childlike tone with which people would address him was commonplace. He said he could endure such insults because one time someone also mistakingly took him for being Stephen Hawking. So to him being mistaken for a mentally handicapped beggar got balanced out by being mistaken for being the world’s most famous genius.
A condescending tone is something I’ve experienced on a regular basis from strangers. My number one weapon against all that has been that I speak up and reveal myself to be articulate, educated, and in all other nonphysical respects a normal or above normal human being. I always understood that that defense was not available to people like my friend Christopher and was saddened by the fact that he had to endure such things. However I was getting a whole new appreciation of the kinds of things that Christopher and other non-communicative disabled people face on a daily basis.
In telling the story to friends and family and in describing the incidents to the nursing supervisor I’ve said things like “I’m college educated. My IQ came within two points of being eligible to join Mensa. I’m not an Alzheimer’s patient or a stroke victim or dementia victim who doesn’t know where they are or what they are doing, I’ve been dealing with this disability for my entire 61 years and I know my body better than anyone” etc. etc.
But somewhere along the way it occurred to me that that argument was a bit bogus. What if I wasn’t as smart or articulate or is experienced as I am? What if I was an Alzheimer’s patient who barely knew where I was or what was going on around me? At what point does having a mental deficit mean that it’s okay to deny me my rights to determine what happens to my own body? How mentally impaired does one need to be before they are no longer permitted to refuse nonessential care from an insensitive caregiver?
I began to feel a little bit guilty that I presumed that only smart, articulate people had the right to self-determination. People with dementia and other mental impairments suffer enough indignity as it is just because they are at times clueless as to their condition, surroundings, and entire state of being. Must they also suffer the indignity of not being able to direct their own physical care at least in noncritical circumstances? My experience in these two incidences lead me to conclude that they probably are treated in significantly disrespectful ways. My defense that I’m awake, alert, and ornery times three makes me guilty of looking down upon and disrespecting dementia patients as much as the people I’m railing against.
If I’m characterizing myself as “the man with no voice” to which no one is listening, how much more so are the dementia patients voiceless and unheard?
Thursday, December 8th was my first full day of having the trach tube. I was once again speechless as I had been when I was intubated. I learned lots of lessons from those first days. I wish I had had more time being able to talk before having the trach and more time to prepare for losing my voice again. But I had spent much of the past day or so going over things in my head about how I would adapt to the situation.
When dad came in Thursday morning I had him set up the iPhone so that I could type messages to him. I reported to him I had had some pain overnight but the pain medication they gave me took good care of it. I then told him that I was going to write some messages to the nurses and I wanted him to transcribe them on a piece of paper. I had already planned that it would be three iPhone screens worth of messages and I would have him write them all down on a single page. I told him to sit down and relax while I typed away. When I finished soon after, here is what the three messages said.
How to talk to me
Eyebrows up and down =Yes
Spit swishing =need mouth suction
Click tongue =Need to use message paper. You point to row then I do click then you point to letters and I click to select
I’m quoting these messages from my iCloud archives. I’m not sure that the phrase “Wink= I’m okay” was originally part of that page. I may have added it later and had dad write it in to the paper version later. I don’t really know when I added that particular communication gesture. I remember at the beginning I had the yes and no but on several occasions I tried to mouth the words “I’m okay” and many of the nurses were unable to read my lips. I thought that the words were distinct enough that you should have been able to understand me. All I know is that there were sufficient number of nurses who could not get it from lip reading so I invented the wink as a new way to communicate that fact. Once I had instructed them how to communicate with me, the next message talked about my specialized nurse call button.
My call button is in my right hand and is very touchy! Keep covers, tubing , and everything away.
Put rolled up washcloth under my wrist. My first finger on long metal part, thumb atop shorter part, blue part toward palm
Those particular instructions probably were very difficult to follow. We always tried to have the nurse take a good look at how my hand was positioned and how I was holding the button before moving it. Dad or Carol always put the button in my hand before they left me alone for the night. As I mentioned earlier, one of the problems was that I could not operate the iPhone and told the nurse call button at the same time. So my only means of communicating at night was by having the nurse point to the message paper row by row, column by column and spelling out words one letter at a time. The final message was instructions on how to safely reposition me.
How to move me
DON’T touch knees! The kneecap dislocate easy. Keep knees apart when lying flat but put side-by-side when rolling me. Roll me using hips and shoulders
The issue with my sensitive knees was one that really worried me. I had always relied on my ability to speak to that I could warn people not to grab my kneecaps. It must’ve been divine providence but I spent nearly an entire month in this hospital and another one and never once did my knees get kinked.
Once needs instructions were written down, I would leave this piece of paper lying on my chest throughout the night so that anyone who walked in might see it. I would tell each nurse to be sure to point it out to the next nurse during the shift change. Although this “User’s Manual” on how to operate me wasn’t always effective, it was better than nothing at all.
I’m going to issue a TMI warning at this point. (Too Much Information). This next section deals with some rather gross stuff.
Ever since I had the G-tube installed last May, I’ve had lots of trouble with constipation. After consulting with the gastroenterologist he suggested I take a dose of Mira-Lax as needed to keep things going. Through experimentation we had found that about one dose per week was enough to keep me going reasonably well. The problem was with all of the confusion and lung problems I couldn’t remember when I had had my last dose. I had to now been in the hospital five days and still had not had a bowel movement.
One of the things that concerned me was they had been giving me antibiotics. Traditionally that gives me diarrhea so I was a little bit reluctant to take a laxative if the antibiotics were already going to make me loose. Dad and I talked about it via my iPhone message and I decided to delay taking the laxative till later that day or perhaps the following day. As things turned out I took a dose of the Mira-Lax early the next morning.
Speaking of antibiotics, I don’t think I fully addressed the issue of whether I did or did not have pneumonia. Some of the Facebook messages posted by my sister Carol said I did or did not have pneumonia at various points. Some of my messages may also have been confusing. But here is the bottom line on the pneumonia issue. When I first went into the ER on December 3 they took an x-ray and said that my lungs looked clear. They later took a sputum sample and did a culture and discovered bacteria so based on that they concluded it was technically pneumonia. There was a second chest x-ray at one point but I don’t think I ever heard any of the results from it. So based on that sample, they gave me a few days of antibiotics but I really wasn’t on anything for very long.
The other topic of conversation with the nurses and doctors was my urinary output. I have an absolutely enormous bladder. It rarely empties completely. They can do an ultrasound scan on your bladder to estimate how much is in there. I was reluctant to let them do a scan because I knew they would find 700-800cc or more which would be very uncomfortable for the average person. I knew if they did a scan then they would want to catheterize me. I don’t even start to get uncomfortable till we approach 1100cc. They were not giving me all my usual medication and so I wasn’t peeing as much as I usually do. The problem is, those medications lower your blood pressure and they were already concerned about my blood pressure being low especially while I was sleeping.
I communicated some of that to the doctors by iPhone message but I found one other message shortly after that which I thought was kind of funny and worth quoting here.
Message for doctors
I peed right after you left.
I couldn’t pee while you were all standing around threatening me with catheter. Also note that I wear diapers at night which can’t be measured. I know when I need catheter trust me.
I ended up winning this argument. Despite their continued concern about my bladder, I never did let them catheterize me. This may seem like a minor victory but I needed a win to boost my spirits.
Weaning off the Ventilator
The plan was to try to have me off of the ventilator and just breathing normally through the trach as much as possible. This first day I was able to stay off the ventilator about five or six hours. From time to time I would start to get congested. The trach would make a rattling noise and at times it would get difficult to breathe when the congestion would appear.
The solution is to suction out the trach using a catheter. It had to be done by an RN. A regular patient care technician was not allowed to do it. They would open up a little kit that contained a pair of sterile latex gloves. Most of the latex gloves they just pull out of a box hanging on the wall are clean but not completely sterile. Their purpose is to protect the nurse or caregiver from my bodily fluids. However because you’re going to be sticking tubes into the trach directly into the lungs you need to be completely sterile.
The gloves in the kit have the cuffs turned up so that as you pull them on you are actually grabbing the cuff from the inside and only rolled the cuff back after it’s on your hand. They make a big deal out of the fact that one of your hands (your right hand if you’re right-handed, left otherwise) is your clean hand. Once you get that glove on you never touch anything except for the catheter tube itself. The other hand is your dirty hand and it can touch just about anything.
Once you get the gloves on, you hookup the catheter to a suctioning tube. There is a little hole at the top of the catheter that you can put your thumb over to either turn a suction on or release your thumb from the hole so that it leaks and doesn’t suck. With the suction off they stick the tube down your trach until they feel resistance. Basically the tube is hitting the Y branch in your windpipe where it splits to go to each lung. Then they put their thumb over the hole and slowly pull the catheter out while making a circular motion like you were stirring a cup of coffee.
Below is a YouTube video that demonstrates the process. In this video they set up a small container of sterile water to rinse out the catheter however they were not doing that part of the process at St. Vincent. This particular video was the only one I could find that was closest to what they did at St. Vincent.
All of the setup of the suction that they describe in the video was already in place. So it goes much faster than this particular video implies. But it would still take a considerable amount of time first of all to round up a nurse, she had to get the kit open, put on the gloves, connect the tubing, and do the procedure. Although they could make multiple passes of the tubing if the first one didn’t clear out completely, after one session they always threw away the tube. That means the next time they had to open a new kit and start from scratch. We asked if they could re-use the catheter to speed up the process. There were a couple of times where I was getting a little bit of distress waiting for them to get things set up. It took for a while to get a feel for when I really needed it. I didn’t want to ask for it at the first sign of a little rattle in my breathing. But I did not want to wait until I was in real distress because it took time to get things going.
Throughout the first day, I think I only needed suctioning two or three times over the five or six hours that I was off the ventilator. So it wasn’t too bad. By the time dad was ready to leave for the day I was ready to get back on the vent. I didn’t want to be off of it at this point at least unless there was somewhere on there with me who could call the nurse quickly if I got in trouble.
That pretty much describes my first full day of having the trach. The next day would be a very eventful day that included a visit from friends, surprise support from hundreds of miles away, and the dreaded “second incident”.
On December 5th I was complaining that the respiratory people were not doing enough suctioning to get my lungs cleared out in preparation for being extubated. But later that day and throughout the night they did several suctioning’s and my lungs were feeling much better. Everyone seemed anxious to get me extubated and since things were going better I agreed on the morning of the 6th to go ahead and remove the tube.
It’s not exactly painful to be extubated but it definitely is an uncomfortable experience having a long tube yanked out of your nose. It was good to be able to talk again although my throat was a little sore and my voice a little weak.
Shortly after they removed the tube one of the nurses looked in the hallway and said “There is a priest outside your room.” I told her to invite him in. I figured it was the St. Vincent chaplain. Much to my surprise it was my good friend Fr. Paul Landwerlen who had been a pastor of St. Gabriel for many years and was partially responsible for guiding me back into the Catholic Church after being away from a years. Fr. Paul had transferred to St. Vincent de Paul parish in Shelbyville Indiana but a couple of years ago had retired. He still lives in Shelbyville and fills in for other priests and parishes around the diocese.
He was surprised that I was extubated and was able to talk. That’s why he was just kind of lurking around outside praying for me and not disturbing me. We had a really nice conversation and I told him a little bit of what I’ve been going through. Naturally he was happy that I was off the vent and talking normally. He told me he had been having some problems with pneumonia lately but was treating it aggressively I was doing okay. We also talked about sports and he was looking forward to going to the next Colts game where he had been given tickets to watch the game and one of the luxury suites.
If I had seen him even a day earlier I would’ve asked him to give me the sacrament of anointing of the sick. As I mentioned before that isn’t necessarily the old-fashioned “Last Rites”. You don’t have to be on your deathbed to get that sacrament. However considering that I was now off the ventilator, my lungs felt good, I didn’t really feel like I needed anointing. I could see myself getting out of the hospital in a couple of days. I thought about having him hear my confession (not that I had any huge sins weighing on my conscience). But about that time dad came in and we talked. Soon after Fr. Paul left.
I brought dad up to speed with everything that happened since he left the previous night. Of course he was happy to see me off the ventilator and doing well.
At one point I was visited by the resident Dr. Heaven. She was the one who had tried to communicate with me using the message board with me pointing to it with a straw in my mouth. It was great to actually have a real conversation with her. I apologized to her for making her a guinea pig in my failed attempts to communicate. We both had a really good laugh over the whole crazy experience.
One of the challenges Dr. Heaven had was in the area of nursing skills. For example occasionally I needed to spit something out into the Yankaur but she had been having difficulty operating it. It’s just a plastic tube connected to a suction device like you spit into at the dentist office. But this one had sort of a plastic sheath over the end of it that for lack of a better word look like a foreskin. You had to pull back the plastic sheath in order to put it in your mouth. She didn’t know how to operate it. When I finally was able to explain to her how it works, she said “You been waiting for days to try to explain that to me haven’t you?” I laughed and said “Doc you are going to be a great doctor someday but I hate to tell you this that you make an absolutely lousy nurse.” and laughed heartily. She agreed with me completely. I told her that she should speak to the head of the residency program and tell them that my recommendation was that they take a day or a day and a half and have all the residents go to a CNA (Certified Nursing Assistant) in-service training for basic patient care skills. Like how to operate the suction, operating the hospital beds, how to turn a patient etc. She chimed in saying “I totally agree and on top of my list is how the hell do you get an IV pump to stop beeping!”
It was such a relief just to be able to talk to the woman and laugh and joke and relive all of the frustrations that we had in our working relationship up until that point.
I was also visited by the young man I spoke of a couple of installments ago who was the one person who was able to read my lips or understand what I was saying as they were trying to intubate me. It turns out he is a medical student named Brady Hansen. I congratulated him on being most focused on what was going on with me when he was in a room full of more educated and experienced people.
We joked about my communication problems with Dr. Heaven. They were both in the room at the same time as we were talking about having the residents learning nursing skills. In regards to my communication problems I said it reminded me of the famous line from the old Paul Newman movie “Cool Hand Luke” where the prison boss beats the crap out of Paul Newman and then on a thick southern drawl says “What we have here is failure to communicate”. Even though this young man was probably in his mid to late 20s likely not even 30 he knew the reference. I was very impressed. Anybody his age who can quote classic movie lines is pretty cool in my book.
I was reminded of a few months earlier when they were putting in my G-tube I was talking to radiology surgeon and telling him a joke about old-time radio and vaudeville comedian George Burns. He had never heard of him. The guy had to be 40 and 45. I realize that’s not 61 like me but I would’ve thought he had heard of George Burns. Yet another example of how student Dr. Brady was in my book ahead of his older and supposedly more experienced colleagues.
By the way several weeks later when I was finally out of the hospital I was browsing through the on-screen guide on my DVR and noticed that “Cool Hand Luke” was playing on Turner Classic Movies. I recorded it and watched it again. Below is a YouTube clip of the famous scene. I don’t know how long that clip will be valid because it probably violates copyright.
While talking to student Dr. Brady and resident Dr. Heaven I told them that part of the problem I had with using the communication board was that the alphabet was in alphabetical order instead of normal keyboard QWERTY order. A lot of times I couldn’t find the letter I was looking for. It reminded me of the old Stephen Wright joke where he asks “Why is the alphabet in that order?… Does it have something to do with that song?”. They both got a laugh out of that joke even though they’d never Stephen Wright.
Success was Short-lived
I don’t have a lot of notes about what else happened December 6th. For the most part it was uneventful day. I believe it was probably the day that I spoke to the nursing supervisor about the so-called “first incident” in which the nurse tried to maneuver me against my will and refuse to communicate with me. I don’t recall if Carol visited that afternoon after dad left or not.
Somewhere late in the evening of the sixth my lungs started going bad again. It was just like it had been three days earlier in the ER and when I first brought me into ICU. Sometimes I could breathe just fine. Then a minute later it felt like my windpipe was closing up from a spasm of some kind. It seemed to me like I was going to have to be intubated again. They paged whoever was on call from the pulmonary doctors. Again a large contingent of residents began to gather around. Among them was resident Dr. Heaven and Student Dr. Brady.
I don’t recall the name of the pulmonary doctor. He went up my nose with the scope and try to suction out some of the gunk. He was looking at a video screen when he noted that something was wrong with my vocal cords. They seem to be stuck together. The doctor who was operating the scope asked if there was a way to record this video. Student Dr. Brady whipped out his iPhone and begin videoing the screen. About that time one of the other doctors figured out that there was a record button on the scope itself and they began recording properly. Brady gave me a heads up that he had the video on his iPhone and would show me later.
I begin to think that whatever this vocal cord problem was had been a major part of my breathing difficulty all along. What felt to me like my entire windpipe spasming closed may have just been my vocal cords not opening properly. Below is a medical diagram illustrating how vocal cords are supposed to work.
In the video, mine were not completely closed but they weren’t as far open as they should have been. Also about one third of the way up there was a place where it looks like they were stuck together. The opening between the vocal cords look like a tall skinny figure 8 or perhaps an infinity symbol standing its end.
In the end they did not put the intubation tube back in me. They said what I really needed was a tracheostomy. They did clear out a bunch of gunk and I was able to breathe okay again using my CPAP and some oxygen. That evening and early the next morning I had several conversations with a variety of doctors about what it would mean to have a trach.
What Are My Options?
For many years I had known there was a possibility that I could end up on a ventilator permanently. I was beginning to wrestle with the fact that today might be the day that that happened. I had lots of questions for the doctors and in summary I learned the following… Doing a tracheostomy did not mean that I would be on a ventilator permanently. Having the hole in my throat would make it easier to suction out any congestion that developed in my lungs. I would not have to worry about the spells of respiratory distress that I had been experiencing.
A just recently watched a political dinner on C-SPAN where Hillary Clinton and Donald Trump spoke at some Catholic fundraiser. Clinton made some really good self-deprecating jokes and as usual Trump made a total ass of himself. But the guy who was the head of the organization look to be in his mid 60s and he had a trach tube in his throat. He was dressed in a white tie tuxedo just like all the other people in this very formal affair. He was the head of the organization presenting the event. However when he talked, he had to put his finger on the trach tube. I had seen other people with a trach and knew that in order to talk they either had to put their finger over the hole or press a button that would temporarily close the hole. This guy looked like he was pushing a button.
While it was reassuring to see a political and religious bigwig leading a relatively normal life despite a trach, there was no way I was going to be able to push the button like he was. The doctors who assured me that there was a special kind of talking valve that you can use instead. It was like a butterfly valve that when you inhale through the trach, the flaps collapsed together and let the air go past into your lungs. When you exhale, the flaps fly open and seal off the trach so that the air goes out you windpipe, past your vocal cords, and you can talk normally. He called it a “passing mirror valve”. He said something about the flaps popping open like a mirror.
I later learned that was not at all what was called or why it was called that. It is actually called a “Passy-Muir” valve after the two inventors named Patricia Passy and David Muir. More about them later…
They said that I would need to get used to the trach for a few days. I would be conducted to ventilator initially. Then they would gradually wean me off of the ventilator to breathe normally to the trach. Once I had established that I could do that well then they would try the Passy-Muir talking valve.
The bottom line was I would still be able to talk even with the trach. I would not be permanently on a ventilator at least not yet. And the fact that we could easily suction out any congestion that might accumulate would be a big plus. At this point it was a real no-brainer for me. I told them I would give consent to have the trach. They said that they would do it tomorrow (Wednesday, December 7).
Surgery by a Familiar Face
Wednesday morning we went over the details of the surgery again and I gave my consent. I don’t recall if I called dad at home and told him they were going to do the surgery or how he found out about it. I don’t believe I called him the night before because all of that suctioning and vocal cord issues were in the middle of the night. I’m pretty sure I called him early Wednesday morning to let him know what was going on so he could get there in time for the surgery. Karen was already planning to visit me that day. When dad told Carol about the surgery he said she did not need to come especially since Karen would be there. However Carol took off work to be there anyway.
I took a look at Facebook to see if I told everyone about the trach surgery. I can’t find any message where I told everyone that the surgery was going to happen. I did find this message that Carol posted. She told everyone I had called her and told her about the surgery. I don’t remember calling her directly. I thought dad had called her. Oh well…
Much to my surprise, the ear, nose, and throat doctor who was going to do my surgery was a familiar face. Dr. Robert Youkilis was my regular ENT doctor. I have problems with tinnitus or ringing in my ears. He also periodically cleans the buildup of wax out of my ears. He has consulted with me on my chronic sinus problems as well. It seems you never really know how specialized a specialist will be within their own field. Even though he is an ear, nose and throat doctor, I had only seen him for ears and slightly nose issues. I wondered if perhaps he was more of an ear specialist then the others. But apparently he does throats as well and would be doing my surgery. I never did find out if it was coincidence that he was the guy on call that day or if they called him specifically because I had him listed as my ENT doctor. I think it was probably just lucky coincidence or divine providence that he was the guy to do my surgery.
I was able to speak with him briefly before the surgery. We talked about my inability to be intubated normally and that we would have to do a nasal intubation up the left nostril. I believe it was about noon when they carted me off to the surgery. They transferred me from the hospital bed onto a gurney and I gave them warnings about being careful with my loose kneecaps. They said they could do the surgery on that gurney and I would not need to transfer again.
Dad followed me down to the surgery area but then eventually went to the surgery waiting room. They must’ve given me a really good dose of Versed because I don’t remember anything about going into the operating room. The next thing I knew, I was waking up back in my same room in the ICU. Dad and Carol and Karen were there.
Karen said “You probably think you are in bad shape for me to show up.” But I knew that she was coming anyway that day. I was slightly more surprised to see Carol but then again not really because I knew she would want to be there once she learned I was having surgery.
There was no pain in my throat where the actual trach was. By now I was getting used to waking up being on a ventilator so that wasn’t such a weird experience. My main problem was my mouth and tongue especially were very sore. Carol explained to me that the surgery had been a bit difficult. She said that Dr. Youkilis told them they had to put my tongue in a clamp and pull it out for some reason. I explained why my tongue was so sore. In fact there was an area on the tip of my tongue in the very center that was actually numb. It was well over a month until that numbness completely went away. I’m still not sure if it really went away or I just got used to it and my brain just sort of fills in whatever information it can to make my tongue feel normal.
I made the following post to Facebook via my iPhone at 2:41 p.m. saying that the surgery was over. Carol made a similar post to her Facebook page a few minutes later.
I just now browsed through my iPhone notes containing all of the messages I wrote to family and the nurses on my iPhone that day. Most of it was asking them to tell me more details about why the doctor had to put a clamp on my tongue. I also talked about what kind of pain medication I was getting and how often. The rest of that day I was just trying to recover from the surgery and dealing with the pain issues.
There was one note where I told Carol that I had talked to a chaplain and asked about getting anointed. I don’t recall when that happened but it must’ve been that morning before the surgery. Until I had the bad spell the night before and had decided to have the trach, I would not have requested the anointing. The chaplain told me that the priest would be in on Thursday and could do it then. I had told her there was no hurry and that was okay.
The plan was that they would gradually wean me off of the ventilator and let me breathe through the trach normally. I told them my iPhone message that I wanted to relax the rest of the day and try to get off the ventilator on Thursday. Apparently they agreed.
I’ve never been a big fan of Apple products. I always thought it was ridiculous that people would stand in line for hours to get the newest iPhone when they already had the previous model in their pocket. Why not just order the thing in the comfort of your home and wait for UPS or FedEx to deliver it. I’ve been very loyal to brands like HP printers, Gateway 2000 and Dell Computers but nothing like the fanaticism of Apple fans. Back in the day I had an Apple ] [ but I only had one because I thought it would give me more programming jobs. I never have owned a Mac of any kind. I’ve always been an MS-DOS and Windows and Intel-based PC kind of guy.
Many years ago I took a chance and bought an iPod touch version 1. It’s sort of like an iPhone without the phone. It was a touchscreen device for playing video, games, Internet access using Wi-Fi. I had a lot of fun with it and later upgraded to the iPod touch 4. However eventually the newer versions of iOS would not work with the iPod touch 4. I hated to buy a touch 5 at the time when the latest iPhone was a 6. I kept thinking they would come out with an iPod touch 6 but they never did. At one point I did a Google search for “Android alternative to iPod touch”. The recommendation was to buy a cheap android phone and don’t activate it. A few years ago I did just that. I purchased a Motorola Moto G android phone and did not activate it. I just used it like an iPod and was really happy with it.
Eventually I discovered a cell phone company called “Ting” which has a really cheap pay-as-you-go plan. You start with nine dollars per month. You get up to 100 minutes of talk for an additional three dollars per month. You get up to 100 MB data for additional three dollars per month. And you get an additional 100 text messages for three dollars per month. In most months I would need no data because I’m always at home on Wi-Fi. Also I don’t very often use text messaging. That means for $9+ $3 per month I could make a few phone calls and that would be it. Worst case scenario it was $9+$3+$3+$3=$15 per month if I talked, texted, and used some data. I couldn’t pass up that kind of deal.
I had no intention of going back to Apple or iPhone even if they did ever come out with another iPod touch. But then I discovered something amazing available in iOS. It was an but accessibility feature called “switch control”. Basically allows you to use a Bluetooth device with a couple of pushbuttons to have complete access to the phone without having to use the touchscreen. Although Android has a similar feature, it is so limited that it is basically useless. Here’s an article and a YouTube video that I created that shows how it works on my nephew’s iPad 2. It’s a little easier to see on a big screen like that than to demonstrate it on an iPhone.
When I was no longer able to use the touchscreen because my disability was getting worse, I absolutely had to switch to iPhone. I ended up getting an iPhone 6 and I was able to activate it using my existing inexpensive Ting plan. Of course I had to pay full price for the iPhone up front which was about $675 but all of you who are buying your phones on contract are paying that much for them anyway. You’re just spreading it out over a two-year contract.
I can’t really do everything with the iPhone that I used to be able to do with my old Android device actually using the touchscreen. I miss playing some of the games like Zuma, Where’s My Water, and at one time I was admittedly an Angry Birds addict. But for practical things like Facebook, IMDb, messaging etc. it’s been great to have full access to the iPhone. But I never thought that the phone would be such an essential item until I started using it in the hospital on December 5.
I normally keep my iPhone mounted on a metal bracket that attaches to a swingarm on my left arm rest. On the back of the bracket is a battery pack that I call a Printy-Boost that I designed for the Adafruit Learning System. And next to it is my “Ultimate Remote” which serves not only as a universal TV remote but as a Bluetooth device for operating the iPhone.
When dad brought the iPhone, we put it on one of those hospital bed trays that you can roll around and it extends out over the bed. We propped it up on its side but we needed something in back of it to hold it up. The nurses had brought in a pump to give me my G-tube feedings but for some reason somebody brought in two of them. We used the spare pump to prop up the phone. It was probably a $1000 piece of equipment we were using like a brick 🙂
Then we put the pushbuttons in my right hand and I called up the “Notes” app on the phone where I could type messages. Then the doctors or nurses or my family could look at the phone and read the messages. It’s interesting that all messages typed in the “Notes” app get archived in the iCloud. I’ve never thought I had much use for iCloud or Microsoft cloud or any other kind of cloud storage. But in the long run I was glad it did archive them. Even if you delete the messages, they remain in your trashcan for 30 days. So about 15 days into this endeavor, I decided that that was an excellent record of some of the things I had been through. I copied everything out of the trashcan into a special folder called “deleted messages”. Now as I write this blog I can go back and see every message that I wrote to the doctors, nurses etc. All the messages are dated however it doesn’t appear to have a timestamp or at least not one that I can find.
The first message that I typed on the iPhone was “Raise head”. Not exactly “Come here Mr. Watson I need you” or “What hath God wrought?” But it was a very practical first message. I couldn’t see the phone very well with the head of the bed lying flat. The next several messages were much more significant. They were notes that I wrote for the doctors and the nurses to try to explain some issues that I was having.
Avoiding the Trach
The next note that I typed on my iPhone gives a lot of insight into what I was worried about at that particular moment. I knew from experience with my mom that you can only be on a ventilator via an intubation tube about a week or so. Even though I had only been on this one a couple of days, I was already thinking way ahead. I wanted to make sure that I was not on the vent so long that they eventually had to do a tracheostomy. I was worried that I wasn’t getting the congestion cleared quickly enough. The ventilator tube had a built in suctioning device that they could stick down the inside of it and suck the gunk out of my lungs. They had done it once or twice in the beginning and it was extremely uncomfortable but it helped a lot. I was concerned they weren’t doing it enough. When I would spit into the Yankaur, all they were getting was spit and sinus drainage. I wasn’t coughing up anything and spitting out of my mouth. Here was the message…
Message to doctor
My breathing is good on vent but congestion is no better for the past 24 hours. Oral suction is getting saliva and sinus drainage only. I hate suctioning from vent but I’m willing,and requesting frequent vent suction because I think that it’s the only way I can get better. I want to know how long I can keep vent before I need trac. I want to avoid trac unless 100% necessary so I want to treat aggressively to avoid it. Tell nurse to tell doctor.
My next message was for the nurses to explain a little bit of a change procedure for using the message board. It read…
Message for nurse
I am only using the phone for long messages. Continue using paper for quick message about what I need. When I make click noise it means I want to use message board. You point at row. My eyebrows =yes. I twitch mouth= no. You point to each letter. I click to select.
Please explain this to next nurse at shift change.
This explains that rather than going letter by letter to the entire alphabet, we had determined it was easier to figure out which row the letter I wanted was in and then after picking the proper row going across the row and picking the letter. With the shift changing every 12 hours I needed to train a new nurse with all my signals and procedures. So I wanted to make sure that they didn’t just pass on my medical information but that they also pass on how to communicate with me.
Sometime after I wrote these messages the doctors must have come in and read the first one addressed to them. While they answered my question saying that I could be on vent for many, many days without having to get a trach, they didn’t get my point that I wanted to aggressive suctioning through the vent so that when I came off of it I would not have to go right back on or I would not have to go to the trach. The suctioning worked to clear my lungs but they weren’t doing it often enough. They kept coming in and giving me breathing treatments but they weren’t doing anything to clear the congestion. Apparently they were talking about taking me off the vent very soon. I wanted to be much better before they did even though I was anxious to be off of it. They seemed impressed that I wasn’t rely on the ventilator to breathe. There I was essentially breathing all my own even though I was connected to the machine. They were also impressed that my oxygen saturation level was consistently in the upper 90s. All that is great but if we don’t get the gunk out my lungs we are going to be in trouble again very soon. I wrote to them…
New message for doctor
They not understand my first message. I am certain that I can breathe okay if they removed vent right now but I am very certain I can’t cough up congestion if the vent is removed. That is why I requested that they suction through the vent. I understand that it would be easier to suction though a Trac but why cut a hole in throat if we haven’t tried suction thru the vent? The respiratory therapist have given me many treatments but not any vent suction in well over 24 hours. Please have nurse call doctor and read this message word for word.
This really illustrates one of the most frustrating parts about using the iPhone to communicate. It looked to me like they were skip reading what I wrote. They would just glance at it to get the gist of what I was trying to say. It took a lot of effort to type out a paragraph of text like this and I made every word count. This happened multiple times. I kind of felt like an ass telling them to “read it word for word” but it was obvious that they were not.
This type of aggressive most argumentative discussion with doctors is normal for me but had been impossible when all I could use was the message board. The iPhone really got me back in my game and got me actively involved in my own healthcare decisions. However in a few days those decisions would become so complicated that even the iPhone messaging system wasn’t enough. But for the time being I was extremely happy to be able to communicate more than a word or two.
Most of the messages were things like how to move my arm or leg to get more comfortable. A reminder to dad and Carol that if they saw the nurse move me around, to make sure that I got my call button back in my hand. One problem about using the iPhone was that I could either hold the iPhone buttons or the nurse call button but not both. So the plan was that anytime dad or Carol was with me, I would have the phone in front of me and if I needed the nurse they could call for me. But once Carol left at about 7 PM, she had to take the phone away and make sure that I had the nurse call button. I would not get back on the phone again until dad arrived in the morning.
One of the last messages on December 5 was to tell them to leave the TV on ESPN so I could watch the Colts game.
I did finally get the respiratory therapists to do more suctioning to get the gunk out of my lungs every time they came in every six hours to do a breathing treatment. It seemed to help. The plan was that I would probably be extubated and get of the vent tomorrow (the 6th).
There were absolutely no archived notes for December 6th. That’s because they did indeed pull the tube early that morning and I was able to talk normally all day.
Our normal routine over the next several days was that dad would come sometime around 9-10 AM in the morning and stay until around 5 PM when Carol would show up and stay with me until the 7 PM shift change. Visiting hours are normally until 8:30 PM however in the ICU they don’t allow family members in the room between 7:00 and 8:00. That’s because they don’t want family members overhearing the doctors and nurses giving reports between shifts. That means if you really wanted to stay until visiting hours are over, you have to kill that hour between 7-8 and then only get additional half hour of visiting time. So Carol would just leave at 7:00 PM.
I mentioned earlier that I told dad to bring my iPhone. Now that I think about it, I seem to recall that dad had already left when I thought of the idea. I use the message board to tell Carol to call dad and have him bring the iPhone. I hoped that I could find a way to type messages on it to communicate easier.
I knew that Carol was posting Facebook messages and that would cover most people. But I know there are some people who don’t check in Facebook very often especially my friend Judy Chapman. So using the message board on the night of the fourth, I told Carol to call Judy and let her know what was going on with me. I was 99.99% sure that her daughter Anne had probably seen the messages on Facebook and would have told Judy. But I just wanted her to get a personal call from us.
I later heard that my request “Call Judy and let her know I’m here” got delivered as “Chris wants to see you.” Well okay… That wasn’t exactly a lie. I really did want to see Judy even though that’s not what I attempted to communicate. This was one case where someone who knew me well (Carol) knew what I really wanted despite my limited ability to express it. Even though she didn’t deliver the message I was trying to deliver, she got the real message right by reading between the lines.
The Second Morning
As a result of my request to inform Judy where I was, December 5 I woke to find Judy walking into my hospital room in the ICU. It brought back memories of a previous visit described here in an older blog. I was very happy to see her. She had taken off work that morning to visit me. It was a bit difficult at first because she didn’t know my yes/no signals but we figured them out pretty quickly. She kept trying to pat my hand to comfort me but unfortunately she was hitting my hand that had the call button in it. I didn’t have an easy way to tell her she could pat anything but that hand.
While Judy was in the room but there was no nurse around, two guys came in lab coats and said they wanted to put in a central line in my arm. It’s called a PIC line which I think stands from Peripheral Inserted Central Line. I had had one before in my neck and they said this one would go in my arm which was easier. I like the idea. However they wanted to put it in my right arm. I talked them into doing the left one because I was worried it would interfere with me using my call button in my right hand. Judy was able to tell them my signals for yes and no. She later said she didn’t feel like she had helped much but I explained just having her able to tell these guys how to interpret my facial movements as yes or no was a big big help.
In the end they agreed and put the line in my left arm despite the fact that the right arm was according to them “the usual way”. It must have something to do with your heart on one side or the other. As it turned out, the PIC line would not have interfered with my right arm. It was nice that these guys were paying attention to me. Much better than I had the day before.
Judy visited for a while. I don’t really remember how long but she determined that I was doing okay despite the circumstances. She went ahead and went on to work the rest of the day. I’m glad my message to her was interpreted wrong. I was really happy she came.
“Only a space…”
I went to a special education school from kindergarten all the way through high school. They had a really nice physical therapy department that included lots of mats for working out, weights of all sizes, and a swimming pool. I never used any of it most of the time I was there. When I did, it wasn’t so much for therapy as it was to get a break from the depressing high school situation we had there. For kids with polio, cerebral palsy or spina bifida physical therapy really had a positive impact. But for guys with muscular dystrophy there really wasn’t anything you could do to help the situation.
When I was about three or four years old when my parents took me to a clinic at Riley Children’s Hospital. They had physical therapists there who would do all sorts of range of motion exercises on me and encourage my mom to do them on a regular basis. I would come away from a clinic visit there with all my joints terribly sprained. The contractures in my joints had already started an early age and all of the exercises they did to try to loosen me up did nothing but hyper extend my joints and tear my tendons.
I will plead guilty to being a “mama’s boy”. I was an only child in the first eight years of my life an incredibly spoiled not only by my parents but grandparents and great aunts. But there were only 2 times in my life that I ever got so needy that I wouldn’t sleep in my own bed and wanted to sleep near mommy. One was after I fell out of my wheelchair at a day camp at Crossroads Rehabilitation Center. And the other one was after an especially torturous physical therapy session that severely sprained my ankles, knees, and elbows. So needless to say I was not a big fan of physical therapy. I later learned the adage that “Only a space separates the therapist from the rapist”.
Sometime after Judy left on the morning of December 5 with no nurse in the room, a man in a woman came in saying they were physical therapists who had been called in to evaluate me. I was absolutely petrified! These people were going to start twisting and turning me in painful ways and I was going to be unable to even grunt or moan in pain. They quickly caught on to my yes and no signals and started asking me about things that were enormously beyond my capability and had they been attempted would’ve caused serious injury. Things like pivoting into a chair. That is a process where someone helps you to sit on the edge of the bed, grab you under the armpits putting about half of your weight on your feet, and then pivoting you into a chair. I vigorously signaled my “NO” signal to all of these suggestions such as sitting on the edge of the bed.
Although they did gently move my arms and legs a bit to see what my range of motion was, they did not try to in any way forcibly extend that range has had the therapists done to me when I was a toddler.
In a nutshell… They listened to me. They respected me. They respected my “NO”. And in the end left me alone absolutely none the worse for the wear. Had things gone differently I would have labeled this “The Second Incident” but in fact I now refer to it as “The Non-Incident”.
I told you in the last installment about my interview with the nursing supervisor and the way I felt disrespected and maneuvered against my will by an impatient nurse. I also spoke with this nursing supervisor about this non-incident with the physical therapist. First I said that I didn’t appreciate them calling in the therapist without at least discussing it with me or my family. We could’ve explained to them a number of things that would’ve made the therapy visit unnecessary and certainly less risky. I would have preferred to have a friend or family member present during such an encounter. So I was pretty firm with my displeasure on how the therapist got there in the first place. But I countered that with the highest praise I could muster for the way those therapists conducted themselves. I told her how scared I was and then how relieved I was when they listened to my “no” and respected my wishes. I asked her to please thank them for their professionalism.
Shortly thereafter, dad showed up with my iPhone and that turned out.to be a real game changer in my ability to communicate with people. The challenges were still huge but at least we were putting a pretty good dent in those challenges. More on that in the next installment.