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.

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.

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 promised 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.