Eighth in a series. Click here for an index of all of the articles in this series.
Getting Caught Up
On December 5th I was complaining that the respiratory people were not doing enough suctioning to get my lungs cleared out in preparation for being extubated. But later that day and throughout the night they did several suctioning’s and my lungs were feeling much better. Everyone seemed anxious to get me extubated and since things were going better I agreed on the morning of the 6th to go ahead and remove the tube.
It’s not exactly painful to be extubated but it definitely is an uncomfortable experience having a long tube yanked out of your nose. It was good to be able to talk again although my throat was a little sore and my voice a little weak.
Shortly after they removed the tube one of the nurses looked in the hallway and said “There is a priest outside your room.” I told her to invite him in. I figured it was the St. Vincent chaplain. Much to my surprise it was my good friend Fr. Paul Landwerlen who had been a pastor of St. Gabriel for many years and was partially responsible for guiding me back into the Catholic Church after being away from a years. Fr. Paul had transferred to St. Vincent de Paul parish in Shelbyville Indiana but a couple of years ago had retired. He still lives in Shelbyville and fills in for other priests and parishes around the diocese.
He was surprised that I was extubated and was able to talk. That’s why he was just kind of lurking around outside praying for me and not disturbing me. We had a really nice conversation and I told him a little bit of what I’ve been going through. Naturally he was happy that I was off the vent and talking normally. He told me he had been having some problems with pneumonia lately but was treating it aggressively I was doing okay. We also talked about sports and he was looking forward to going to the next Colts game where he had been given tickets to watch the game and one of the luxury suites.
If I had seen him even a day earlier I would’ve asked him to give me the sacrament of anointing of the sick. As I mentioned before that isn’t necessarily the old-fashioned “Last Rites”. You don’t have to be on your deathbed to get that sacrament. However considering that I was now off the ventilator, my lungs felt good, I didn’t really feel like I needed anointing. I could see myself getting out of the hospital in a couple of days. I thought about having him hear my confession (not that I had any huge sins weighing on my conscience). But about that time dad came in and we talked. Soon after Fr. Paul left.
I brought dad up to speed with everything that happened since he left the previous night. Of course he was happy to see me off the ventilator and doing well.
At one point I was visited by the resident Dr. Heaven. She was the one who had tried to communicate with me using the message board with me pointing to it with a straw in my mouth. It was great to actually have a real conversation with her. I apologized to her for making her a guinea pig in my failed attempts to communicate. We both had a really good laugh over the whole crazy experience.
One of the challenges Dr. Heaven had was in the area of nursing skills. For example occasionally I needed to spit something out into the Yankaur but she had been having difficulty operating it. It’s just a plastic tube connected to a suction device like you spit into at the dentist office. But this one had sort of a plastic sheath over the end of it that for lack of a better word look like a foreskin. You had to pull back the plastic sheath in order to put it in your mouth. She didn’t know how to operate it. When I finally was able to explain to her how it works, she said “You been waiting for days to try to explain that to me haven’t you?” I laughed and said “Doc you are going to be a great doctor someday but I hate to tell you this that you make an absolutely lousy nurse.” and laughed heartily. She agreed with me completely. I told her that she should speak to the head of the residency program and tell them that my recommendation was that they take a day or a day and a half and have all the residents go to a CNA (Certified Nursing Assistant) in-service training for basic patient care skills. Like how to operate the suction, operating the hospital beds, how to turn a patient etc. She chimed in saying “I totally agree and on top of my list is how the hell do you get an IV pump to stop beeping!”
It was such a relief just to be able to talk to the woman and laugh and joke and relive all of the frustrations that we had in our working relationship up until that point.
I was also visited by the young man I spoke of a couple of installments ago who was the one person who was able to read my lips or understand what I was saying as they were trying to intubate me. It turns out he is a medical student named Brady Hansen. I congratulated him on being most focused on what was going on with me when he was in a room full of more educated and experienced people.
We joked about my communication problems with Dr. Heaven. They were both in the room at the same time as we were talking about having the residents learning nursing skills. In regards to my communication problems I said it reminded me of the famous line from the old Paul Newman movie “Cool Hand Luke” where the prison boss beats the crap out of Paul Newman and then on a thick southern drawl says “What we have here is failure to communicate”. Even though this young man was probably in his mid to late 20s likely not even 30 he knew the reference. I was very impressed. Anybody his age who can quote classic movie lines is pretty cool in my book.
I was reminded of a few months earlier when they were putting in my G-tube I was talking to radiology surgeon and telling him a joke about old-time radio and vaudeville comedian George Burns. He had never heard of him. The guy had to be 40 and 45. I realize that’s not 61 like me but I would’ve thought he had heard of George Burns. Yet another example of how student Dr. Brady was in my book ahead of his older and supposedly more experienced colleagues.
By the way several weeks later when I was finally out of the hospital I was browsing through the on-screen guide on my DVR and noticed that “Cool Hand Luke” was playing on Turner Classic Movies. I recorded it and watched it again. Below is a YouTube clip of the famous scene. I don’t know how long that clip will be valid because it probably violates copyright.
While talking to student Dr. Brady and resident Dr. Heaven I told them that part of the problem I had with using the communication board was that the alphabet was in alphabetical order instead of normal keyboard QWERTY order. A lot of times I couldn’t find the letter I was looking for. It reminded me of the old Stephen Wright joke where he asks “Why is the alphabet in that order?… Does it have something to do with that song?”. They both got a laugh out of that joke even though they’d never heard of Stephen Wright.
Success was Short-lived
I don’t have a lot of notes about what else happened December 6th. For the most part it was uneventful day. I believe it was probably the day that I spoke to the nursing supervisor about the so-called “first incident” in which the nurse tried to maneuver me against my will and refuse to communicate with me. I don’t recall if Carol visited that afternoon after dad left or not.
Somewhere late in the evening of the sixth my lungs started going bad again. It was just like it had been three days earlier in the ER and when I first brought me into ICU. Sometimes I could breathe just fine. Then a minute later it felt like my windpipe was closing up from a spasm of some kind. It seemed to me like I was going to have to be intubated again. They paged whoever was on call from the pulmonary doctors. Again a large contingent of residents began to gather around. Among them was resident Dr. Heaven and Student Dr. Brady.
I don’t recall the name of the pulmonary doctor. He went up my nose with the scope and try to suction out some of the gunk. He was looking at a video screen when he noted that something was wrong with my vocal cords. They seem to be stuck together. The doctor who was operating the scope asked if there was a way to record this video. Student Dr. Brady whipped out his iPhone and begin videoing the screen. About that time one of the other doctors figured out that there was a record button on the scope itself and they began recording properly. Brady gave me a heads up that he had the video on his iPhone and would show me later.
I begin to think that whatever this vocal cord problem was had been a major part of my breathing difficulty all along. What felt to me like my entire windpipe spasming closed may have just been my vocal cords not opening properly. Below is a medical diagram illustrating how vocal cords are supposed to work.
In the video, mine were not completely closed but they weren’t as far open as they should have been. Also about one third of the way up there was a place where it looks like they were stuck together. The opening between the vocal cords look like a tall skinny figure 8 or perhaps an infinity symbol standing its end.
In the end they did not put the intubation tube back in me. They said what I really needed was a tracheostomy. They did clear out a bunch of gunk and I was able to breathe okay again using my CPAP and some oxygen. That evening and early the next morning I had several conversations with a variety of doctors about what it would mean to have a trach.
What Are My Options?
For many years I had known there was a possibility that I could end up on a ventilator permanently. I was beginning to wrestle with the fact that today might be the day that that happened. I had lots of questions for the doctors and in summary I learned the following… Doing a tracheostomy did not mean that I would be on a ventilator permanently. Having the hole in my throat would make it easier to suction out any congestion that developed in my lungs. I would not have to worry about the spells of respiratory distress that I had been experiencing.
A just recently watched a political dinner on C-SPAN where Hillary Clinton and Donald Trump spoke at some Catholic fundraiser. Clinton made some really good self-deprecating jokes and as usual Trump made a total ass of himself. But the guy who was the head of the organization look to be in his mid 60s and he had a trach tube in his throat. He was dressed in a white tie tuxedo just like all the other people in this very formal affair. He was the head of the organization presenting the event. However when he talked, he had to put his finger on the trach tube. I had seen other people with a trach and knew that in order to talk they either had to put their finger over the hole or press a button that would temporarily close the hole. This guy looked like he was pushing a button.
While it was reassuring to see a political and religious bigwig leading a relatively normal life despite a trach, there was no way I was going to be able to push the button like he was. The doctors who assured me that there was a special kind of talking valve that you can use instead. It was like a butterfly valve that when you inhale through the trach, the flaps collapsed together and let the air go past into your lungs. When you exhale, the flaps fly open and seal off the trach so that the air goes out you windpipe, past your vocal cords, and you can talk normally. He called it a “passing mirror valve”. He said something about the flaps popping open like a mirror.
I later learned that was not at all what was called or why it was called that. It is actually called a “Passy-Muir” valve after the two inventors named Patricia Passy and David Muir. More about them later…
They said that I would need to get used to the trach for a few days. I would be connected to ventilator initially. Then they would gradually wean me off of the ventilator to breathe normally to the trach. Once I had established that I could do that well then they would try the Passy-Muir talking valve.
The bottom line was I would still be able to talk even with the trach. I would not be permanently on a ventilator at least not yet. And the fact that we could easily suction out any congestion that might accumulate would be a big plus. At this point it was a real no-brainer for me. I told them I would give consent to have the trach. They said that they would do it tomorrow (Wednesday, December 7).
Surgery by a Familiar Face
Wednesday morning we went over the details of the surgery again and I gave my consent. I don’t recall if I called dad at home and told him they were going to do the surgery or how he found out about it. I don’t believe I called him the night before because all of that suctioning and vocal cord issues were in the middle of the night. I’m pretty sure I called him early Wednesday morning to let him know what was going on so he could get there in time for the surgery. Karen was already planning to visit me that day. When dad told Carol about the surgery he said she did not need to come especially since Karen would be there. However Carol took off work to be there anyway.
I took a look at Facebook to see if I told everyone about the trach surgery. I can’t find any message where I told everyone that the surgery was going to happen. I did find this message that Carol posted. She told everyone I had called her and told her about the surgery. I don’t remember calling her directly. I thought dad had called her. Oh well…
Much to my surprise, the ear, nose, and throat doctor who was going to do my surgery was a familiar face. Dr. Robert Youkilis was my regular ENT doctor. I have problems with tinnitus or ringing in my ears. He also periodically cleans the buildup of wax out of my ears. He has consulted with me on my chronic sinus problems as well. It seems you never really know how specialized a specialist will be within their own field. Even though he is an ear, nose and throat doctor, I had only seen him for ears and slightly nose issues. I wondered if perhaps he was more of an ear specialist then the others. But apparently he does throats as well and would be doing my surgery. I never did find out if it was coincidence that he was the guy on call that day or if they called him specifically because I had him listed as my ENT doctor. I think it was probably just lucky coincidence or divine providence that he was the guy to do my surgery.
I was able to speak with him briefly before the surgery. We talked about my inability to be intubated normally and that we would have to do a nasal intubation up the left nostril. I believe it was about noon when they carted me off to the surgery. They transferred me from the hospital bed onto a gurney and I gave them warnings about being careful with my loose kneecaps. They said they could do the surgery on that gurney and I would not need to transfer again.
Dad followed me down to the surgery area but then eventually went to the surgery waiting room. They must’ve given me a really good dose of Versed because I don’t remember anything about going into the operating room. The next thing I knew, I was waking up back in my same room in the ICU. Dad and Carol and Karen were there.
Karen said “You probably think you are in bad shape for me to show up.” But I knew that she was coming anyway that day. I was slightly more surprised to see Carol but then again not really because I knew she would want to be there once she learned I was having surgery.
There was no pain in my throat where the actual trach was. By now I was getting used to waking up being on a ventilator so that wasn’t such a weird experience. My main problem was my mouth and tongue especially were very sore. Carol explained to me that the surgery had been a bit difficult. She said that Dr. Youkilis told them they had to put my tongue in a clamp and pull it out for some reason. I explained why my tongue was so sore. In fact there was an area on the tip of my tongue in the very center that was actually numb. It was well over a month until that numbness completely went away. I’m still not sure if it really went away or I just got used to it and my brain just sort of fills in whatever information it can to make my tongue feel normal.
I made the following post to Facebook via my iPhone at 2:41 p.m. saying that the surgery was over. Carol made a similar post to her Facebook page a few minutes later.
I just now browsed through my iPhone notes containing all of the messages I wrote to family and the nurses on my iPhone that day. Most of it was asking them to tell me more details about why the doctor had to put a clamp on my tongue. I also talked about what kind of pain medication I was getting and how often. The rest of that day I was just trying to recover from the surgery and dealing with the pain issues.
There was one note where I told Carol that I had talked to a chaplain and asked about getting anointed. I don’t recall when that happened but it must’ve been that morning before the surgery. Until I had the bad spell the night before and had decided to have the trach, I would not have requested the anointing. The chaplain told me that the priest would be in on Thursday and could do it then. I had told her there was no hurry and that was okay.
The plan was that they would gradually wean me off of the ventilator and let me breathe through the trach normally. I told them my iPhone message that I wanted to relax the rest of the day and try to get off the ventilator on Thursday. Apparently they agreed.
To be continued…