Training Day — Holiday Hospital Part 9

This is the ninth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. It’s been several months since I added to this series because I’ve been busy doing other things. However it’s time to make a big push and finally finish the story. There are other major events happening in my life right now so I need to put this behind me and move onto the next chapter. Here is an index to all of the entries in this series.

Training Day

We are now down to December 27, 2016 and this was a banner day that we had been waiting on for a couple of weeks. The respiratory therapist from Home Health Depot was coming to visit to show me all of the equipment we had been waiting weeks to get. He needed to train Dad and Carol on how to use it. Also present were 2 nurses from St. Vincent were going to be visiting me from time to time once I got home. I’m not really sure why they needed to be there since theoretically they should have known how to operate all of this anyway. 12/27/2016 7:30 AM

The therapist was a really nice guy named Josh who not only delivered the equipment and trained us, he continued to be our representative for many months. In the first week home he made several visits which eventually tapered off to a monthly visit where he would download data from the ventilator, perform preventive maintenance, and bring us additional supplies.

Josh later went on to do respiratory work in a hospital and was replaced by another guy. We continued to have good people serve this role of the monthly visit to check the machine and to bring us supplies. At one point Home Health Depot sold its business to a company called Lincare which is a terrible company to work with. We ended up switching to a different company called Aerotech and we get good service from them to this day.

The demonstration and training started off with a ventilator called a Trilogy which from what I’ve learned is one of the most popular small portable ventilators available. I had already done some research about it on the Internet. It’s pretty versatile in that it can be used as a ventilator, CPAP, or BiPAP. It has a backup battery that will last several hours in case of a power failure. It comes a rollaround stand. Just below the ventilator is a humidifier device. It is a small heater that heats up a clear plastic chamber with a metal plate in the bottom of it. You fill the chamber with distilled water and a hose coming out of the ventilator blows through the chamber picking up heat and humidity before going through a hose that connects to your trach.

The ventilator that I had been using in the hospital had 2 hoses coming front it. One was to push the air in and the other let me exhale. They connected to a small Y connector right before they connected to the trach. This ventilator only had one hose. To allow you to exhale, it had a small connector that they call a “whisper swivel”. It is a swivel connector so that the hose doesn’t get twisted but it also has a small gap in it that allows air to escape. If you didn’t have some way to vent your exhaled carbon dioxide you would just keep re-breathing that same gas and would get carbon dioxide poisoning. It’s similar to the tiny hole in my CPAP mask which allows me to exhale. I later learned why it’s called “whisper”. A few months ago we tried out a different type and it made a lot of noise. We stuck with the quiet version.

Jumping ahead in the story a bit… This relatively minor different between the ventilator that I had been using and the one I was going to continue to be using was a bit disturbing the first night. Exhaling felt significantly different. I really wish they had brought the equipment in sooner so that I could get accustomed to it before I left the hospital. As it turned out, the difference wasn’t really that much once I got accustomed to it. But it was a little bit scary the first night when I noticed how it felt different. I wasn’t immediately sure how I would adjust.

The next piece of equipment was a suction machine. This was one of the things that had concerned me the most. Not only was it going to be handy when I needed to spit in the Yankauer, it was also going to be necessary to suction the trach with a catheter. I was concerned about how portable this machine might be. As it turns out it was going to be fine. It fits nicely in a padded cloth case are little larger than a sixpack cooler. It has battery power as well as plug-in. Although it was a little bit larger than I wished it was, I was sure it would work and keep me mobile to go places like visiting family or going to the movies. I have seen other models that were smaller and more portable than this one but I’ve not taken the time to pursue them. This one is working out okay nearly 2 years later.

I was also going to get a small air compressor pump that would provide enough air for a nebulizer treatment. I have been getting these treatments every six hours around the clock. I knew I wasn’t going to do the treatments that often but I wasn’t sure how much I was going to need them. As it turns out I really only need them on as needed basis. I’ve probably only done 8 or 10 of them in the past 20 months.

The one missing piece of equipment was a high flow air compressor that would provide humidity to the trach when I wasn’t on the ventilator. This compressor would use the same humidifier as the ventilator. As I mentioned before, all of the time that I was in bed they insisted I stay on humidified oxygen that would blow into a cup that fits over my trach and talking valve. When I was sitting up in the wheelchair in the hospital I would get off of the humidifier and some days that was okay. However other days I could feel myself drying out thus creating some congestion. In some respects being connected to a humidity source was a kind of dual edged sword. If I became dependent upon it, it would not only restrict my movement away from home but it would also tie me down to one location in my house. On the other hand if it was something I really needed, it was the one thing that wasn’t being addressed despite all of my questions. The respiratory guy from Home Health Depot assured me that he could get me the compressor. All they needed was orders from the doctor that was going to be easy to get.

I’m going to jump ahead and tell the rest of the compressor story out of sequence. While all of the other equipment was reasonably sized and portable, this compressor is a monster that weighed a ton. It was about 2 feet long, a foot tall by about 8 inches deep. It was also very loud compared to the other equipment. For the first couple of weeks, my daily routine was I would get off of the ventilator very early in the morning when Dad would get up about 7 AM. I would then go on the compressor/humidifier until I would get up and dressed and about 10 AM. On rare occasions I may have put it on when I went to bed at about 9 PM and use it until 11 PM when I got on the vent. But eventually I found that it wasn’t necessary at all. It turned out that getting rid of the device was as hard as getting it in the first place. We had a choice of either getting the doctor to rescind his orders or to sign a document saying we were no longer using it against medical advice. Because it was going take a special trip to the doctor just to get those orders changed, at one point I finally just told them to take it and we would sign the AMA form. e made this move when we transitioned from Lincare to Areotech.

I did try one other humidity device. There is a small fitting that you can put on your trach called an HME or Heat and Moisture Exchange device. It sometimes is referred to as an artificial nose because your nose warms and humidifies the air you breathe in. I previously discussed this in an earlier installment. We did end up trying them out and I used them occasionally but not very often and not recently. I still have a huge box of them.

Overall the training went very well and I was satisfied that I was going to get the equipment I needed. Here was my Facebook post from that afternoon which expresses my great relief that we were getting closer to sending me home. 12/27/2016 4:03 PM

I stayed in bed that day and got caught up on some other things. Among them I finished editing and posting a blog entry that was top 10 stories of my life for 2016. Here’s a link to that entry.

Top 10 News Stories in My Life for 2016

The other fun thing that happened that day was that I reconnected with Brady Hansen. He was the medical student who had helped care for me when I was in the ICU. I forget the details of how he tracked me down. I believe I had left notes in the ICU for the staff with links to my blog and/or Facebook page. Anyway I got email from him and he had begun reading my blogs about the days in the ICU. He said it was great insights for someone who was about to be a doctor. I encouraged him to share with anyone he wanted. We connected on Facebook and I’ve exchanged a message or two with him from time to time since then. At one point he shared that he was very pleased that he had gotten a residency at a military hospital in California. He had previously been in the military and although it meant moving his family, they were still very excited about it.

The other thing I did that evening was I did some research about the speaking valve that I use. It’s called a Passy-Muir device named after the 2 people who invented it. David Muir was not a designer or engineer or medical professional. He was just a guy with muscular dystrophy who ended up on a ventilator like me and was frustrated that he could not talk. Here is a link to a Facebook post that I made that day about him. It contains a link to a biography page about him. I’m sorry to report he passed away years ago but thanks to his ingenuity I and people like me have a voice. I am greatly indebted to him. 12/27/2016 5:59 PM Biography of David Muir.
http://www.passy-muir.com/david

Being Tested

The final item that we needed to check off before I would be allowed to go home was that Dad had to spend the night with me to prove that he was capable of taking care of me. They brought in a folding bed with wire springs and a rather thin foam mattress completely encased in slick black plastic. They covered it with a sheet that didn’t really fit very well. When you try to sit on it, the sheets would slide around on the slick plastic. The plastic covered mattress on the metal springs made a horrible squeaky noises every time you moved. Later the next day we suggested they ship it to Guantánamo Bay however even Dick Cheney might think it was too harsh of a torture for use on terrorists.

Dad and I were both pretty miffed that he even had to do this. Dad came up with the idea that he was going to make the most of it. If patients in the hospital were entitled to three meals a day and I wasn’t taking advantage of that because of my G-tube, he tried to talk them into bringing him a breakfast tray in the morning as if he were a patient. I tried to tell him he wasn’t going to get very far with that request but he made it anyway. As I expected they were not too keen on the idea and instead told him what hours the cafeteria opened in the morning.

The respiratory therapists from the hospital were in and out that afternoon and evening. They couldn’t help themselves but to play around with the controls and menus on the ventilator even though they’ve never seen one like that before.

In the hospital I had a nurse call button but I’ve spoken about extensively in previous blogs. But during the night, if Dad was going to take care of me, I didn’t want to call the nurse. I needed to call Dad. So we had to bring my call buttons from home. It’s a little Arduino based gadget connected to an X-Bee radio system. It sends a wireless signal from a box in my bedroom to a box in Dad’s bedroom. His box has a loud buzzer on it. So even though we were in the same room, because I can’t talk with the vent on, we needed both boxes so that I could buzz him.

I was concerned that because the buzzer is very loud that it would disturb the other patients or cause the nurses to come running. I wanted to close the door on my room but they said it was against policy to have patients room door closed. We had to leave it open a crack.

Dad had no trouble getting me on the ventilator so we settled down for the night. Every time Dad made the slightest movement his terrible bed made all sorts of squeaky noises. Dad is always a restless sleeper. He tells me that at home he wakes up in the middle of the night with the sheets or covers balled up. With the sheets sliding around on the slippery plastic, it was a wonder he was going to have any sheets at all.

When I’m in bed, they insisted I be connected to an oximetry and heart rate detector. If my oxygen level or heart rate drops below certain levels it rings an alarm. Whatever the default setting is for the heart rate, my sleeping heart rate often goes below that. We’ve been adjusting the level so that it doesn’t trigger so easily. But every time I take the device off and put it back on when I get up in the wheelchair, it resets the defaults. So in the middle of the night, my heart rate went low and the alarm beeped. Dad thought it was me pressing the call button. So he got up trying to ask what I wanted. I had to use my message board with him pointing at various things to try to figure out why I called him. I didn’t have an item on the board saying “I didn’t call you”.

We eventually resorted to taking me off of the ventilator temporarily and putting my speaking valve back in. Then I was able to explain to him what had happened. I don’t recall if we got the nurse or the respiratory therapist to reset the trigger level on the heart rate monitor or not. In the process of taking the off of the ventilator, the ventilator alarm started ringing and we had difficulty figuring out how to reset it. That drew the attention of the respiratory therapist.

It was a wonderful woman about 50 something years old who was my favorite of all the respiratory therapists. I’m embarrassed to say that I don’t for certain remember her name especially because I had grown so fond of her. I guess I didn’t put her name in my notes because I thought that I would never forget her. As I said she was my favorite of the entire two weeks and as you will see played a vital role in getting me out of the place. I’m going to call her Shirley because I know that wasn’t her name and I don’t want her to get in any trouble over the rest of this story.

I don’t recall the exact sequence of events that followed. Shirley was in and out a couple of times. We had explained to her how we got the alarms mixed up. She helped us get everything reset on the ventilator the way it should be.

Somewhere along the way of this entire process of getting me off and on the vent, Dad made a mistake. He made a mistake that we had discussed extensively over a period of days before we ever got to this overnight test. It was the only mistake that you could make with the ventilator that was potentially dangerous so we had discussed it thoroughly. But in the middle of the night when we are both half-asleep or had been sleepless all night as he had been, it’s easy to make mistakes.

The trach has a balloon-like device called a cuff that you have to inflate with air using a small syringe. It cuts off your upper airway above the point of the trach so that when the ventilator blows air into the trach, it doesn’t blowback out through your mouth and nose. The danger is, if you put the talking valve back on the trach without first deflating the balloon, you can’t breathe. In this case Dad was getting ready to put me back on the vent and he inflated the balloon before removing the valve which has the same bad effect. If left there too long it could kill me. As I said, we had discussed the situation thoroughly. We knew we couldn’t guarantee that we would never make that mistake. But we both convinced ourselves that if it happened, he would see that I was in distress and immediately remove the valve allowing me to breathe.

We really didn’t think we would end up making this mistake on the first night. But when it happened, our contingency plan where he would notice my distress and do something about it would have worked perfectly. In fact he was just about to reach to remove the valve so that I could breathe. But there was a problem… Shirley was there. She witnessed it all. And she quickly grabbed the valve before Dad could.

It was as much my fault as it was Dad’s. Shirley was on her way out the door and I thought something else I wanted to state her. I don’t remember what it was. So I had not noticed that dad was inflating the balloon until it was too late and once it was inflated I could not talk to stop him. If we had been alone, I would not have been distracted and would have reminded him to remove the valve before inflating the balloon.

We were there that night to prove that Dad could handle taking care of me by himself. But when the alarms went off on the vent we had difficulty resetting them. And in the process of trying to get me off of the vent, we made a very serious (potentially fatal) mistake. I knew I was okay the entire time. But what scared the crap out of me was that we had failed the test. I was worried they would not let me go home.

Somehow I managed to get to sleep despite my worries. My estimate is that night I may have gotten five hours sleep. Dad thinks he was lucky if he got three. It was sometime around 5 or 6 AM that I told him to get me off the vent. I knew he had had a terrible night and suggested that he go down to the family lounge down the hall and tried to get some rest in a recliner chair or sofa there. He said that the furniture in that room was no good and he wouldn’t be able to get any rest. We would just have to tough it out the rest of the day.

Then we discussed what we needed to do about Shirley. I told Dad that we needed to explain to her that even though we made some mistakes, we had planned for these mistakes and that we w down 20 ould have been okay without her help. He agreed that we needed to say something to her. Her shift change was at 6 AM so Dad stuck his head out the door and kept his eyes open for her. He flagged her down and we invited her in to talk.

I said approximately the following… “We need to talk about what happened last night. The whole purpose of Dad being here was to prove that he could take care of me on our own. But we had some problems last night that you helped us to resolve. I want to describe to you from our perspective what we think happened last night. When the alarms went off on the ventilator, we had a little difficulty figuring out how to turn them off. The one on the vent is easy. But the one on the humidifier heater is different. Even if you fix the problem, it still keeps beeping until you hit the reset. We’ve got all of the paperwork and instructions here and we would’ve figured out how to reset it eventually. So while we appreciate you helping us out, we are confident we could have handled that part on our own.”

Then I continued with the bigger issue… I said “The other thing that happened last night was that Dad inflated my balloon without removing the valve first. We had talked about this possibility extensively prior to this. We had both convinced ourselves that if we made such a mistake that we would recognize it quickly and we knew exactly what to do to fix it. It just so happened that you were here and fixed it first.” I also explained how I had gotten distracted and did not warn him what was going wrong. I explained if we had been on our own, I would have been more focused and it would have never happened in the first place.

I concluded by saying “From our perspective, that is what happened. We could’ve gotten through all of that on our own. From a different perspective we recognize that it seemed like we didn’t know how to operate the machine and that at one point Kenny nearly killed Chris.” I kind of snickered at that point and she responded by letting out a big laugh.

I went on to say that I realized she was a professional with a responsibility to do what she thought was right. I was not going to ask her to keep this information quiet. “You’ve got to do what you feel is right under these circumstances. This was a test to see if we could handle this on our own. From our perspective we are capable of doing that despite what you saw last night. I just wanted to share with you our perspective on the events and we trust you will do what you think is in our best interest.”

She was totally cool about the whole thing. The first thing she said was that she and every respiratory therapist she had ever known had made that exact same mistake but had only done it once. She said when that happens and you realize it and you fix it, it scares you so bad you know you will never make it again. So you guys have already had your scare. She went on to say she understood what we were saying and that she had every confidence that we would be okay on our own.

If I could have, I would have jumped up out of bed and kissed her full on the lips. 🙂

Hell, I already had kind of a crush on the woman before all of this. That night she saved my life… not by pulling the valve so I could breathe. She saved it by believing in me and Dad and letting us move forward with leaving the hospital and getting on with the rest of our lives. I can’t begin to describe how much she meant to me. She was so genuine in her explanation that I’m not really sure I needed to make the speech I made. Whether or not my words convinced her is irrelevant. In the end, she said nothing and we were able to go home the next day.

Over the past 20 months since then I think we may have done it twice more. In both instances it took less than 5 seconds to realize mistake and fix it. We were right in speculating that we would make the mistake from time to time and we were right that if it happened we could fix it without putting me in any serious jeopardy.

Having passed the necessary test and survived the night. They agreed that I could go home that day. But getting out of a place like that is never easy. Scofield and Burrows on the TV show “Prison Break” have gotten out of prison easier than I did getting out of the hospital. Details in the next installment.

Christmas Gifts — Holiday Hospital Part 8

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

Big Surprise

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

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

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

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

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

Christmas Eve

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

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

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

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

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

Christmas Day

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

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

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

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

After Christmas

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

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

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

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

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

The Christmas We Deserve — Holiday Hospital Part 7

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

Chaplain Services

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

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

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

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

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

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

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

A Charlie Brown Christmas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Technical Support — Holiday Hospital Part 6

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

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

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

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

A Video Surprise

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

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

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

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

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

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

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

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

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

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

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

Coordinating Services

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

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

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

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

Taking a Tour

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

Left Hanging

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

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

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

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

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

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

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

A Dry Heat — Holiday Hospital Part 5

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

Vertical at Last

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

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

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

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

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

As Dry as Arrakis

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

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

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

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

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

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

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

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

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

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

Skills Lab

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

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

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

Miscellaneous Events

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

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

An Uneventful Weekend — Holiday Hospital Part 4

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

Recap

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

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

An Uneventful Weekend

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

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

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

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

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

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

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

Having a Prophet for a Friend

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

Where did we leave off?

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

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

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

Remote 3D Printing

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

My St. Vincent Call Button

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

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

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


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


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

Having a Prophet for a Friend

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

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

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

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

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

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

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

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

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

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

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

A Busy First Day

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

A Parade of Therapists

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

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

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

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

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

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

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

Here is my only Facebook post for the 15th.

Sparse Amenities

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

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

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

Telepresence

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

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

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

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

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

Updated Users Manual

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


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

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

How to communicate with me.

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

What to do when I press my nurse call button…

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

How to position me: DO NOT TOUCH MY KNEES.

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

My Special Call Button

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

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

About the room

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

About the bed

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

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

It had been a very busy first full day.

My New Hospital Home

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

Prologue

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

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

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

About Seton

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

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

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

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

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

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

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

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

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

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

Settling In

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

My St. Vincent Call Button

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

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

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

More G-tube Controversy

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

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

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

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