SpaceX Can’t Save Us From Our Current Malaise Because This Isn’t 1968

Over the past couple of days I have watched every minute of the historic flight of American astronauts to the International Space Station aboard a SpaceX Falcon 9 rocket and a Crew Dragon capsule. After nearly 10 years of having to send our astronauts into space aboard Russian rockets, we finally have the capability to launch Americans from American soil on an American rocket. I could not be happier about the entire situation. The top photo above shows our three American astronauts aboard the International Space Station along with their two Russian cosmonaut crewmates after the successful docking of the Crew Dragon Demo-2 capsule.

I grew up during the space race of the 1960s. I remember watching Alan Shepard aboard Freedom 7 flying a suborbital mission on May 5, 1961. I watched it on TV in my kindergarten class while my classmates complained that “Captain Kangaroo” had been preempted. I tried to explain to them “Don’t you get it? This guy is going to be the first American to ride a rocket into outer space! That’s much cooler than Captain Kangaroo!”

I watched on TV every minute of every launch throughout the Mercury, Gemini, and Apollo programs as well as many space shuttle launches. I built models of Mercury, Gemini, And Apollo capsules and rockets as a kid. It is rare that I miss coverage of any current SpaceX launches. I’m a huge fan of Elon Musk the billionaire entrepreneur engineer genius founder of SpaceX and Tesla. I visit multiple YouTube channels to follow the daily progress of the construction and testing of his new Starship rocket which will someday take astronauts to the moon and eventually to Mars. Every man or woman who is ever been to outer space is one of my heroes. I admire them and the teams are dedicated people who put them there.

To put it succinctly… I’m a space fan.

However I am disturbed by some of the questions that have been posed to the astronauts, NASA officials, and Elon Musk about the “inspirational value” of this most recent achievement. Now don’t get me wrong, I’ve been inspired by the entire space program and I am inspired by what Musk and company have accomplished. It’s a great achievement. But the questions being posed go something like “Given all the turmoil we have in the world today regarding the pandemic and the violence in the streets don’t you think that this accomplishment shows what people can do when they work together?”

The question is often placed in the context of what the US space program did for us in the late 1960s. Set your “Way Back Machine” to 1968. We were at the height of the Vietnam War. There were protests in the streets over the war. There were riots outside the Democratic National Convention in Chicago and other places. Presidential candidate Robert F Kennedy and civil rights leader Dr. Martin Luther King Jr. were assassinated. The country… the world… needed inspiration and hope.

In some small measure, the accomplishments of American astronauts provided that healing sense of hope. It began on Christmas Eve, December 24, 1968, in the most watched television broadcast at the time, the crew of Apollo 8 gave a solemn and inspiring reading from the Book of Genesis as they orbited the Moon. It culminated with the landing of Apollo 11 on the moon on July 20, 1969. I remember every detail of those events as I watched them unfold on TV.

Among the things that gave us perspective on our lives and our planet was a photograph taken by Apollo 8 that has come to be known as “Earthrise“. It showed our tiny blue planet rising over the moon as seen by the crew of Apollo 8. See the image at the top of this blog. (credit to NASA) It was not only an inspiring image but it was one that truly gave us a different perspective. Lots of inspiring events claim to “change our perspective” but this was literally a prospective that had never been witnessed by human beings before… the image of our planet as seen from farther away than any human being had ever traveled.

Nothing can completely heal the wounds of the turmoil we experienced in the 1960s. The 1970s with the continuation of the Vietnam War and our own subsequent abandonment of it as well as the damage to our faith in government brought on by the Watergate scandal continue to haunt us to this day. But the events of the Apollo program, while not curing us of our social and political turmoil, did provide an important and significant reminder that the human race is one race and we share this planet together. It’s the only one we’ve got.

Elon Musk is concerned about the fact that it’s the only planet we have. His primary motivation for getting us to Mars is so that we will not be a single planet species. He idealistically believes that the human race can only be saved if we have another home besides Earth. Agree or disagree. He’s a man with a vision.

While the accomplishments of the Dragon Demo 2 mission are an important step to our future exploration and commercialization of space travel, they just don’t have the power to heal us or inspire us in the same way that Apollo did. Our perspective today is no different than it was a week ago.

Let’s be brutally honest about what really happened here. Let’s answer the question much less diplomatically than the astronauts, NASA officials, or Elon Musk have been when answering the question “Can this mission inspire us out of our current turmoil?”

The answer is no. Mostly because this isn’t 1968. Things are much different.

In the 1960s we believed that the Soviet Union was an existential threat to our country and to democracy around the world. Our need to demonstrate our superiority over them was more than just bragging rights. The potential militarization of outer space was a clear danger. Our need to exhibit our mastery of space travel was an important element of the Cold War.

The quest to land human beings on the moon was initiated by John F. Kennedy and sustained by his successor Lyndon Johnson. In a famous address, Kennedy explained that we go to the moon “not because it’s easy but because it’s hard”. An underlying justification for the race to the moon was to be an inspiration and a demonstration of our capabilities as a country. Furthermore the Kennedy and Johnson administrations were both dedicated to and in a large part responsible for civil rights reforms in the 1960s. They were administrations who were actively trying to transform our country into one in which the phrase “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” were not just words on an ancient piece of parchment. Those words are among our founding principles to which we must continually strive to make a reality.

But we don’t live in 1968. Elon Musk is not JFK. Elon Musk is a businessman who intends to turn a profit. Although his underlying justification for being in rocket business is to “save the human race from being a single planet species” that comes across as ridiculous hyperbole to most people. We don’t live in 1968 and Lord knows Donald Trump isn’t LBJ. The accomplishments of Crew Demo-2 do not represent a giant leap forward in space exploration. Instead it’s a long overdue fix to a problem that should’ve been solved (and could’ve been solved) 10 years ago if we had had this program in place prior to the retirement of the space shuttle. It doesn’t change our perspective of the earth or of the capability of human accomplishments. Although it represents a new way of doing things in space it doesn’t really break new ground.

Let’s be even more brutally honest. Does Crew Demo-2 provide us with “hope of what can happen if we all work together?” I’m an old white guy who loves everything space related but I am offended by that question in that context.

Let’s rephrase it… “Does the event of 2 college educated, military trained, white guys flying aboard a rocket built by a billionaire white guy who made his billions in the dot-com boom and selling luxury cars give the average young black man hope that he will NOT be murdered in cold blood by a racist police officer with more than a dozen previous complaints against him? Do these SpaceX and NASA employees with high paying government jobs that have continued to work throughout the pandemic give hope to the average middle-class American who is unemployed (along with 20% of all Americans), or to those employed in a job that potentially exposes them to a deadly virus?”

The answer to both is fuck no!

And I am offended by anyone who thinks it could.

If COVID-19 Testing is the Key to Reopening then We Are Screwed

Yesterday I went to Eli Lilly’s drive up COVID-19 testing facility to get checked for the virus. I’m going to tell you about that experience and then I will tell you why I think we are in deep trouble.

My Testing Experience

It all started on April 17, 2020 when I learned that one of my home health aides had been exposed to the Corona Virus. That same day I developed a fever of 101.2°. Although I was able to get it under control with Tylenol easily, I decided to call my doctor on April 20. He prescribed a Z-Pak antibiotic and told me that if I got worse or cannot control the fever to go to the ER.

The next day I was informed that the aide who had been exposed to the virus had tested positive. I called my doctor back again to tell him I was still doing well but the test on my aide had come back positive. After brief discussion we decided I should go to the Eli Lilly drive-up testing facility. The problem was… I was stuck in bed. One of my other aides having learned that I have a fever and had been exposed to someone who had tested positive, decided not to come back to work with me. I can’t really blame her. These home health aides only make about $11 per hour and she has children and a family to consider.

I didn’t want to try to schedule the test until I was certain I had someone to get me out of bed. I finally got a replacement aide on April 24. She did so wearing full PPE consisting of a mask, gloves, and a paper over garment. After I got up I called to schedule my testing appointment.

The registration process included emailing them the written orders I had from my doctor. their requirements are that you be a first responder such as police or fire, be a healthcare professional, or be symptomatic over 65, or be symptomatic and be at risk for other health conditions. With my disability, limited lung capacity, and a variety of other medical issues I fit into the last category. There was only one catch… By the time we got thing scheduled, my fever had subsided. Technically I was no longer symptomatic but I didn’t tell them that. I told them that I was at risk which was true. I told them I had recently been exposed to a healthcare worker who had tested positive which was true. And I had my written doctor’s orders.

After going through the registration process, they assigned me a time of 10:15 AM the next day Saturday, April 25. Unfortunately my home health aide usually arrives at 9 AM and it takes at minimum 90 minutes to get me up and dressed but considering she was new it was going to take at least two hours. There’s no way I could be there at 10:15 AM. The only option was to call back later in hopes of getting a later time. They could only assigned you the next available appointment. You could not pick a later time.

I called back a few hours later and managed to get an appointment for 11:30 AM. It turns out my aide was going to be coming a little bit early and we would be able to meet that time. This was a Saturday and they were only going to be open until 1 PM. They would be closed Sunday so if I waited much longer I would be getting a Monday appointment and it would likely be early morning. So I took what I could get.

Saturday morning I got up and we drove down to S. East St. at about the 900 block. The line of cars waiting to get into the facility was more than 2 city blocks long. We were going north on East Street and had to go down and go around the block to get headed southbound and get in the line. By the time we did that, the line was even longer. We ended up making a U-turn in the middle of East Street which was otherwise pretty much deserted. We arrived in the line at about 11:25 AM five minutes prior to my scheduled appointment.

The line was barely moving but it did move. The first check-in station on East Street about a block away from the entrance to Eli Lilly had people standing there in orange vests. They would hold up a sign with a phone number so that you could talk to them without rolling down your window. Signs everywhere warned you “Stay in your car. Keep your windows up”. We had been warned we had to have a fully charged cell phone available.

Apparently in addition to the testing, there was also sign up for something else and I think she said it was a clinical trial of some kind. Depending on what kind of testing you were getting or whether you were signing up for this “something else” you would get a different colored ribbon of crêpe paper tied onto your side view mirror.

My biggest concern about this entire process was that from what I had seen on TV, you would pull up to this drive-up testing, you would roll down your window, and they would swab your nose through the window. Of course I would be sitting in the back of my van with Barb driving and there was no way I could lean out a window. I was fully prepared to raise a big stink if they refused to test me. Barb kept trying to calm me down about that. At the first check-in station on East Street we told them that I was the patient in the back of the van and that we could open the doors and let them into test me but I couldn’t get my head out the window. The rear windows on the van don’t open. The girl we were talking to over the cell phone called over her supervisor and the supervisor called ahead. After a brief minute she seemed they would work something out.

Eventually we made our way to the entrance and turned off of East Street into the Eli Lilly campus. The lawns were perfectly manicured. There were lots of trees and the dogwood trees were in full bloom. It’s a gorgeous looking place. We went another hundred yards or so and then the people directing traffic started letting the pink ribbon people cut the line. We had a green ribbon. Apparently the pink ribbon line was moving faster.

The line eventually turned into a parking garage beneath the facility. We turned left and the pink ribbon people went straight. The cars would pull up in 2 lines with 4 stations on each line. Again they would hold up a sign giving you a cell phone number and you would call it to speak to a person sitting at a table with a laptop computer. They asked us a confirmation number that we had printed from the confirmation email. With that number they knew my name and confirmed address date of birth etc. to make sure it was really me. They then put together a plastic bag with my testing supplies in it and my name written on the bag. A guy placed it behind our windshield wiper and we drove on to the final station.

Up until now, people were wearing regular street clothes or perhaps an orange vest. I think some of them were probably wearing masks. But at the final testing stage the workers were in full hazmat suits. They looks a little bit like those Tyvek paper suits but I’m pretty sure it was head to toe. Their head was completely covered and it was a hose coming out of the top of the helmet. We explained to them again that I was in the back and I was the one who needed to be tested. We opened up the side doors and let down the wheelchair lift. The woman doing the testing climbed in the van and stuck a long swab up both of my nostrils. I couldn’t turn my head so she had a little trouble getting the left one but we got it done. They gave us some paperwork including a code number that we will use to get my results from their website. It was now about 12:30 PM so it took about an hour in line.

Overall it looks to me to be a very smoothly run, well designed, efficient process. I think if they hadn’t had more than one kind of thing going on at the same time, the wait time would have been shorter but I can’t say that for sure. Even though it was a bit frustrating at times, looking back I can’t see how it could’ve been run any better.

Why We Are in Trouble

Even though my experience went relatively smoothly, I have to think about all of the things that could’ve gone wrong.

First of all… What if I hadn’t found an aide who could get me out of bed? What if I was completely bedridden? I had discussed this possibility with my doctor when we first talked about doing the drive through testing. My only option would have been to call an ambulance and have them transport me to St. Vincent ER to be tested. That would’ve exposed me to an ambulance gurney, a pair of EMTs, and the environment of emergency room and the workers and their. While we would hope that all of those would be safe and sanitary, the truth is we’ve had hundreds of such people catch the virus and sadly many have died. There is a strong possibility I do not have the virus. If I did, my doctor and I both believe I would be sicker than I am. But if I couldn’t get out of bed to get tested, the process of getting me tested would’ve exposed me to not only COVID-19 but who knows what other diseases? Not to mention the expense of 2 ambulance rides and an ER visit. I’ve already discovered the only way to get Medicaid to pay for an ambulance trip is to call 911 and tell them it’s not an emergency. To schedule a routine doctor visit for example and be transported by ambulance you have to schedule 2 days in advance and you need confirmation from the doctor that you absolutely have to be seen in person and that you have no other means of transportation.

I was in a kind of Catch 22. It was going to be hard to get an aide to come take care of me when my virus status was unknown. However I couldn’t get tested unless an aide would come get me up. The bottom-line is we need a system of visiting nurses or doctors who can test at risk people in their homes.

While Barb thinks my fears that they would not have tested me in my van were overblown, and in fact we had no problems with that issue, it could’ve very easily turned out differently. People are living by very strict rules these days. At least the responsible people are. They might’ve had a rule that said under no circumstances could one of the test personnel enter a patient’s vehicle to perform the test. As unfortunate as that would be for me and as insulted as I would be, I sort of understand why they might have that kind of rule.

If you have watched the news lately, there was a feature with a woman who had a disabled daughter. They wanted to take advantage of the bicycle and hiking trails at Eagle Creek Park. But the parks department has closed the park to all but pedestrian traffic. She wanted to drive in to the grounds to unload her daughter in her wheelchair so that they could go hiking. The park refused to make an exception and suggested she could drop off her 10-year-old daughter at the gate, go park somewhere else, and then catch up with her. Yeah… Like you’re going to leave your 10-year-old child unattended at the entrance of a public park. Do that and you could get arrested for child endangerment. Even after the TV station contacted the parks department, they refused to budge. That kind of inflexibility and accommodation for people with disabilities is quite common. And to be honest while the park situation was ridiculous, I could understand why people might want to refused to enter a vehicle to test the patient. The bottom line here is we need assurances that tests are accessible to people with special needs even if they can get out into the world. Although this went well, it doesn’t take any imagination to think it could’ve gone badly. Trust me on this.

I have to ask, what if I had been honest and told them my fever was over? I would’ve been completely ineligible for this test. As it turned out, later that day after I got home from the test, my fever did return slightly up to 99.1°. While that doesn’t seem like much, my normal temperature is about 97.8°. The Tylenol took care of it easily but at the time I was taking the test, I had been completely symptom-free for more than three days. What do you do when you know you are at serious risk, at risk of infecting others, have been exposed to someone who is positive? What do you do? If my fever had gone up the day before instead of the day of would’ve been clearly eligible and not had to stretch the rules of the system. Depending on when that fever actually returned I might have really had the fever sitting there in line and getting tested.

I did a Google search asking where else I might be able to get tested. Here is the link to the search I did. In addition to the Eli Lilly facility several hospitals are doing testing. The VA hospital is for veterans only and only if they are symptomatic. Ascension St. Vincent has basically the same rules as Eli Lilly. You have to be first responder, healthcare worker, at risk and above all symptomatic. Community Hospital doesn’t say what their criteria are. They just say to call for a virtual doctor visit and then they will advise you what to do.St. Francis hospital system says that depending on their available supplies, the rules on who can be tested might change daily. Basically they are saying they are rationing supplies for testing. It’s obvious that the other testing centers are limiting testing to certain priority groups because of the lack of supplies. A couple weeks ago when Trump said “Anyone who wants a test can get it” we all knew it wasn’t true. What I’ve seen here in Indianapolis proves that. Of course public officials such as Trump and his cohorts have all been tested for the virus even though they are completely asymptomatic. Whose life could’ve been saved by that test they did on the tigers in the zoo?

So the bottom-line is… The only thing you can do if you are asymptomatic and have been clearly exposed to someone like I was, is to completely self isolate. That means if you’re one of the people who is lucky enough to still have a job you have to quit. God knows what kind of process you would have to go through to keep from getting fired for not going in. And then you would have to prove that your unemployment was COVID-19 related. What would a single parent without a support network of family or friends do under such circumstances? Abandon her children to CPS? What if you are responsible for caring for an elderly family member? Does that make you a “healthcare professional”? If not, your choice would be to put your elderly relative into a nursing facility which would probably be more risky than you taking care of them yourself. Of course when they catch the virus from you, you get to blame yourself rather than blaming the nursing facility. None of these options are fun.

Under the current circumstances, testing supplies are in such short supply that they have to be rationed and prioritized in this particular way. I don’t deny that. The people who are getting priority for testing deserve the priority. And it was only a difference of a day and a degree of fever that I sort of stretched the system to get my test.

We are told that in order to safely open up our economy we need MASSIVE amount of testing and contact tracing. The truth is my home care agency and I have done our own contact tracing. If I come back positive, I will be the one contacting everyone I’ve been in touch with over the past few weeks to let them know of my status. None of the people that I will tell about my positive test will qualify to be tested until they become symptomatic. At which point God knows how many other people they have infected. Are they supposed to self isolate on the off chance I might have passed it to them? Are they going to shut down what is left of their life for 2 weeks just because they can’t get peace of mind that they are negative?

I don’t know how it is around the country, but Indianapolis was mentioned by the US Surgeon General a few weeks ago as an emerging hotspot. With the limited capacity we have for testing right now, we are NOWHERE NEAR READY TO REOPEN.

I witnessed an amazingly efficient and well-run testing program. And it is totally inadequate to meet our needs.

We are screwed.

Prison Break — Holiday Hospital Part 10 — End of the Series

In December 2016 I spent a month in the hospital with respiratory problems and getting a trach. The first half of the story was chronicled in a series titled “Pray That They Listen to the Man with No Voice” about my time in St. Vincent ICU. The second part title “Holiday Hospital” is about the rest of December including Christmas in St. Vincent Seton Specialty Hospital. I recently was going to share the story with a friend and realized that I had not yet completed the Holiday Hospital series. It’s been over three years since the events happened but I never did complete the story. So I will try once again to finish it up. This is part 10 in the “Holiday Hospital” series. Here is an index to all of the entries in this series.

Prison Break

In the previous installment of this story I told about the test that my dad had to pass by spending the night in the hospital with me and proving that he could handle my ventilator and trach issues. It had been a really rough night and neither of us had gotten much sleep but we had passed the test despite some minor mistakes. Theoretically all that had to happen was for the doctors or nurse practitioners to sign some forms and we would be on our way home. The respiratory therapist was planning on meeting us at my house to bring a bunch of supplies. We already had the new ventilator and will be taking it home with us.

Checking out of a hospital always takes longer than you think it should. You are anxious to get home and bureaucracy always moves at a snail’s pace. Over the years I’ve learned you just have to be patient and let the system go on its own pace. Here is a Facebook post I made at 6:50 a.m. Just as a reminder anytime you see this little Facebook icon is a link to a Facebook post related to when I’m talking about. [12/28/2016 6:50 AM]

Dad got me up and dressed and we began packing up a bunch of my stuff and hauling it out to the van. Unfortunately we hit a major snag. In theory my trach should be replaced once a month. For the first replacement it should be done by a doctor who would train my dad how to do subsequent replacements. We are describing events of December 28 and I had had the trach since December 7 so the soonest I would’ve really needed a replacement would’ve been January 7. But for some reason the powers that be decided they would not let me out of the hospital until I had a definitive appointment to change the trach.

I tried to convince them that it was not an immediate need. If they were so concerned about getting the trach changed why didn’t they just go ahead and change it right now if that was a prerequisite for me getting out. They didn’t really have anyone who was willing to do that. As I mentioned in previous installments there was really only one doctor covering the entire facility. Everything else was run by nurse practitioners and therapists and the doctor wasn’t available at the time.

They were trying to get in touch with my regular ENT doctor but he was on vacation over the holidays. The receptionist who booked his appointments didn’t know if he would even do that kind of thing in the office. Here is a Facebook video that I shot at 11:43 AM that shows me up and dressed and ready to go and basically telling the same story I just told in the past couple of paragraphs. In the video I said that I had had the trach installed on December 9 but it was actually December 7.

I impatiently roamed the halls almost all afternoon occasionally arguing with the case manager Michelle trying to get her to sign off on releasing me without getting the trach change nailed down. I even bribed her with a little 3D printed Christmas tree ornament which she really liked but it didn’t move things along any faster. [12/28/2016 2:02 PM]

Happy Holidays

While I was killing time waiting on my release from prison I managed to strike up conversations with some of the other staff. There were respiratory therapists and nurses just standing around the hallway in between doing whatever needed to be done. So I had some nice conversations with them. One of the people who I had seen every day was a woman who would sweep the rooms and emptied the wastebaskets. She was obviously a Muslim because she always wore a hijab headdress. I often wondered what it was like for her to work in a place where there were perhaps no other Muslims and everyone was going around wishing one another Merry Christmas. On several occasions, especially this one, I thought about saying to her “as-salamu alaykum” which is a tradition Islamic greeting that translates to “peace be upon you”. But I really didn’t know how it would be received and I don’t know any other Arabic phrases or words and I didn’t want to have her think I could actually speak Arabic.

A few months later I would have a respite nurse named Mohammed Tahir who became a good friend. We frequently had long discussions about religion. He was very curious about other faiths and had studied them on his own. I would answer his questions about Catholic Christianity and he would answer my questions about Islam. If I had had my experience with him I would’ve been much more open to reaching this woman with the Arabic greeting.

It Fell off a Truck

Among the things that they do for you as you are leaving the hospital is make sure that you have all of your necessary prescriptions. Just about everything that I was taking except for the new prostate medicine was stuff that I was already taking before going into the hospital. And if I missed a day or two of the prostate drug it wasn’t going to be any big deal. The one thing I was worried about was albuterol. It is a liquid that you put into your nebulizer to help clear your lungs. It comes a little plastic ampoules where you twist off the top and pour it into the nebulizer. I was concerned that I might need a breathing treatment before dad could get to the pharmacy and get that prescription filled. So we talked to one of the respiratory therapists and she was able to slip us a couple of ampoules of the medicine to take home with us. We said to her “I wonder where this came from? We just found it lying here.” She said “Maybe it fell off a truck and you found it.” We had a big laugh. Little did we know that filling that prescription was going to be more difficult than we anticipated so it was a good thing she got us a few free samples.

Free at Last

I don’t know what time we finally got out of the hospital but my notes say that we didn’t get home until 5 PM. We still had to meet the respiratory therapist at my house so that he could deliver the supplies. They arranged to get me a tentative appointment with my ENT doctor sometime in early January to change the trach. Unfortunately it was something like 8 AM which there was no way I was going to be there that early. A few days later I called to reschedule it at a more convenient time and we didn’t actually change it until January 12. And guess what… the world did not come to an end and I did not die because my trach was changed a few days later than scheduled. But I had wasted the entire day until they made arrangements for no good reason whatsoever.

As we were going out the door escorted by the case manager Michelle, she acted as though she had achieved some sort of victory. She had told us that it would take 2 weeks to get the ventilator arranged and I was being released from the hospital almost exactly 2 weeks after I entered. I explained to her that first of all there was no reason on earth the process should’ve taken that long. Also we had been trying to arrange the ventilator for five or six days back when I was still at St. Vincent before ever got to her facility. And that time had been completely wasted. Essentially we had to start from scratch when we moved to the new hospital. Furthermore there was absolutely no medical reason why I had to be in the hospital that long except for the bureaucracy of obtaining the ventilator and there was no reason that she needed to keep me in the hospital all that afternoon. So I didn’t acknowledge anything she did as a victory and I told her so in as nice yet firm as I could muster under the circumstances.

A Mountain of Supplies

As mentioned above, we got home about 5 PM. We had called the respiratory therapist Josh to meet us there and he arrived shortly after we did. He brought in boxes upon boxes upon boxes of supplies most of which we didn’t know how to use or even if we would ever need them. By the time he left they were piled high on our dining room table and all over the family room floor. We had no idea where we were going to store the stuff. He came back again the next day with even more supplies and eventually brought the high flow air compressor that I was going to use to humidify my trach when I wasn’t on the ventilator. As I previously reported in the end we never used that compressor very much and ended up getting rid of it after having to fight hard to get it in the first place.

Dad still had to unload my ventilator and all of my clothes, laptop computer etc. out of the van. I did a G-tube feeding and went to bed. We were both incredibly exhausted but especially dad because he had not slept well in the hospital with me the night before on that horrible Guantánamo Bay worthy cot.

The First Day Home

The first night at home was uneventful. Dad and I both got caught up on our sleep. The only problem we have was when we got me off of the ventilator the next morning we did not fully deflate the cuff in my trach and so I had a bit of difficulty breathing when he put in the talking valve. We eventually figured it out and I was able to breathe much easier. We had yet another visit from the respiratory therapist who brought even more supplies. We also had a visit from 2 nurses from St. Vincent were going to come for a half-hour a day a couple times a week to check up on me. I’m not really sure why we had them but in one incident they turned out to be useful.

I was able to get shaved again which felt good. We were not able to get all my prescriptions and as it turned out the nebulizer prescription for albuterol was going to be difficult to fill. Apparently you need some sort of special authorization for Medicare/Medicaid to pay for it. Of course the prescription was signed by either a doctor or nurse practitioner from Seton Hospital. I had no idea who they were. I didn’t recognize the name. We tried to get in touch with them through the case manager Michelle but we could not contact her over the weekend. Finally one of my St. Vincent nurses proved her worth that Saturday by getting on the phone with the pharmacist and reading him the riot act. She gave a real tearjerker scary argument saying that she didn’t want to be responsible if I went into respiratory arrest because I didn’t have my nebulizer medication. He finally relented and filled the prescription. As it turned out I did need a few treatments over the next several days but in the long term I rarely needed nebulizer treatments. I think that initial batch of albuterol lasted me over a year and I think we eventually threw some of it out because it expired and we got another prescription for my regular doctor. [12/29/2016 2:05 PM]

Epilogue

I continued to take notes about my day today progress from the time I got home through January and parts of early February. The story isn’t really interesting in retrospect so I’m not going through all of the detail that I did about the hospital stays. In summary here are some highlights of things I went through.

Typically if I needed to call dad while I was in bed and he was in the living room watching TV or asleep in the recliner, I would just yell really loud. When he was in the bedroom I had a buzzer that I can push and it would ring the alarm in the bedroom. But when I was on the ventilator, I couldn’t call at all by voice. So I had to modify a wireless remote that I had built for the living room to include a buzzer like the one we had in the bedroom.

After spending the entire month in the hospital using a spit cup with a lid and a straw in it, we decided using a regular glass tumbler with no lid and a straw was a bad idea. Dad got some plastic cups that he found in our cabinets that had been left over from some event my mom had hosted years ago. We couldn’t find lids that would fit so I made them out of ninja flex plastic on my 3D printer. I still use plastic cups with 3D printed lids to this day.

I had a follow-up doctor appointment with my family doctor, my pulmonary doctor, and my ENT who trained us how to change the trach. He changed it with my dad watching and then asked dad to remove it and put it back in again while the doctor watched. It all went very smoothly. However a month later when dad tried to change it on its own, we had great difficulty getting the old one out and the new one back in. We got it eventually but it was very difficult and clear the lots of blood. This continued for several months so I made another appointment hoping that he could show us what we were doing wrong.

The doctor sort of looked at us funny and you could tell he was thinking “Didn’t we are ready show you how to do this?” When he went to take out the old trach, he had the same difficulty getting the old one out that we did. When he tried to put in the new one, he could not get it in at all! I was so happy that he was having the same difficulty we did. He finally started probing around my opening using the Yankaur and discovered that my opening was not straight in. It actually slopes downward slightly. So then he tried putting in the trach again but this time angling it downward. It popped right in with little difficulty. Dad and I continued use this method. Since dad passed away in February, my sister Carol has been changing the trach on a monthly basis and it works okay using this downward angle method. I’ve had some trach failures at inappropriate times. The balloon that blows up the internal cuff got damaged and would not inflate. The worst time once the night before my dad’s funeral. I could not put on the ventilator and had to try to sleep without it. I got about three hours sleep and then had to go deliver the eulogy for my dad which you can find here. Other than that we’ve had few problems with the trach these past 3 years.

For the first several weeks I had lots of problems with my back brace not fitting very well. I also had problems with my hips. I just wasn’t used to sitting up in my wheelchair all day every day. Over the course of the next months things began to slowly get back to normal. However some days I had to go back to bed early. While it is possible to do a G-tube feeding in bed, in theory you need to be propped up at an angle for at least 30 minutes after a feeding. Otherwise you risk reflux and aspiration. So we made the decision after all these many years to finally get a hospital bed. That way if I needed to go to bed early, I can still do my late G-tube feeding and prop myself up. It took about five tries to get the equipment provider to get the proper paperwork to my doctor and back again. When we finally got the bed it was not fully automatic as we had requested. It did have a motor to raise and lower the head and feet but it did not have a motor to raise the entire height of the bed. We could have paid the difference in price out of pocket because Medicare/Medicaid would not pay for the fully automatic version but we didn’t discover that until the guy actually delivered the bed. We just decided to live with it as it was. You could manually crank it up or down so we just adjusted it to the height of my old bed and left it there.

As I had speculated, my home health aide Riah had moved on to different clients so we had to train some new people. But they didn’t last very long and eventually we got Riah back again. She continued to work here for nearly 3 years but had to quit a few months ago because of back problems. She hopes to return to work someday and we will welcome her back. We really became very good friends over the past several years and I miss her a lot.

I could fill up a dozen more blog posts about the process of recovery after this incident. It took a long time for me to get back to something similar to my previous normal. Among the things that concerned me was my ability to go out with friends like Rich and Kathy were have friends like the Byram’s or the Brake’s stay with me while dad went to the doctor or did other things. Eventually I got over my concerns and trained them all how to suction my trach and how to do G-tube feedings. I got to the point where I was pretty much back to normal. I thought perhaps my days of going to evening events were going to come to an end but I did eventually attend 2 great concerts at the Deer Creek Music Center with my sister Carol. We also continued to go to hockey games at the Fairgrounds Coliseum but normally try to do afternoon games so it’s easier on me. I continue to go to the movies regularly with my friends Rich and Kathy and we recently saw the final Star Wars film completing a tradition that had lasted 42 years. We have seen every Star Wars movie together (sometimes multiple times) except Rogue One which was playing while I was in the hospital.

The story of my dad’s failing health in 2018 and his death in February 2019 could fill many many more blogs. I’m not sure if I’m up to reliving all of those events. In May 2019 my friend Barbara Alkema and her son Josh moved in with me. That kept me out of a nursing home. My health has deteriorated in the past few months and that has been a big adjustment.

So life continues to send big challenges my way and I do my best to deal with them as they come. I did seriously dedicate myself to documenting the assistive technology such as my iOS switch control and ultimate remote that were so valuable to me in the hospital. I have a new appreciation for what it means to not be able to speak.

Overall the decision to have the trach has kept me alive much longer than I could have without it. It was a good decision to get the trach. It’s allowed me an excellent quality of life and I’m grateful that things like the Passy-Muir speaking valve were invented so that I can continue to be a person with a very strong voice.

The End