Thirteenth in a series.Click here for an index of all of the articles in this series.
Wrapping Up a Good Day
In our previous installment I talked about a Facebook posting I had made on the afternoon of December 11 which was very upbeat. It was just a few hours later however that everything fell apart. A series of unfortunate circumstances came at me rapid fire and led me on a downward emotional spiral that was the worst of the entire hospital experience.
The 11th was a really good day. I had been off of the ventilator most of the day. Dad had brought in my laptop because I thought perhaps I could operate it using my ultimate remote Bluetooth device. It would’ve had a bigger screen than typing on my iPhone. As it turns out I discovered the on-screen keyboard built into Windows 10 wasn’t nearly as useful for switch control as was the iPhone. So I had dad pack up the laptop and told him via iPhone message that once I got that talking valve in and could use my voice control I would switch back to the laptop. I was just about to tell dad to switch the TV to AMC channel before he left so that I could watch The Walking Dead. Then things started going wrong.
My John Hurt Experience
In the classic 1979 sci-fi film “Alien“, the advertising tagline was “In space, no one can hear you scream.” The most memorable scene of course was when the character played by John Hurt suddenly starts having a convulsion and spitting up blood at the dinner table. His fellow astronauts swipe all of the food off of the table and lay him out. His stomach starts bulging and a small alien creature bursts through his abdomen spraying blood everywhere before scurrying off to the hidden recesses of the spaceship.
My experience fortunately wasn’t anywhere nearly as bad but I was put in a position where I had horrible pain in my belly and I couldn’t scream.
It started when I noticed something wet on my belly. I thought perhaps I had missed peeing in the urinal that I kept propped up between my legs. I asked dad to check the urinal. It was in the proper place but he soon noticed the cause of my unexpected wetness.
My G-tube had come out of my abdomen.
A G-Tube is a rubber tube that goes through a hole in my abdomen and sticks into my stomach for feeding. I had had one since the previous May because it became too difficult for me to swallow food normally. The G-tube is held in place by a small inflatable balloon on the inside that keeps it from pulling out. However if the balloon bursts, there is nothing holding it in place and it just pops out.
A couple of months earlier, we had accidentally gotten the tube tangled up in my covers and when I rolled over in bed, we yanked it out. We stuck it back in temporarily but had to go to the ER to get it replaced. Since then we had been very careful not to get the tube tangled up in anything.
Unfortunately one of the many consequences of not being able to speak was that I could not warn people if the tube was getting tangled up. Over the past several days there had been many times when it had been yanked upon pretty severely. At that point I wasn’t surprised that it came out. I was more surprised that it had stayed in that long. Usually the tube hangs out of me about 6 or 8 inches and we pump the formula into it using a large syringe. But in the hospital they had kept me connected to a pump machine with a long tube. On several occasions, one quite memorable, a respiratory therapist had gotten tangled up in it and it had gotten yanked. I hadn’t said anything to anyone because it seemed to be holding up.
So when Dad discovered that it had come out again I was frustrated but not worried. I don’t recall if we temporarily put the tube back in or what we did to keep me from leaking further. The bottom line was they sent for some surgical residents to come in and replace the G-tube. It had gone smoothly in the ER a few months ago when Dad and I had pulled it out. I didn’t expect any complications.
Unfortunately these residents didn’t seem to know what they were doing. I think they were using a larger diameter tube than I had used previously. They kept trying to jam it in but it wouldn’t fit. The pain was phenomenally bad! And the worst part was, I couldn’t even grunt or yell or do anything to let them know how much it hurt. It had been bad enough the past several days that I could not talk. Now I couldn’t even yell or moan when I was in excruciating pain. I felt like I was living in outer space and no one could hear me scream.
One group of residents gave up and another one came in later. They had decided that as a temporary measure they would insert a Foley catheter. Foley catheters are normally used for your bladder. However like a G-tube they are small rubber tubes with the balloon anchor on the end of them. Foley’s come in lots of different sizes and so they searched around to find a small gauge pediatric version hoping that it would go in the hole easier.
Unlike the G-tube however which has a valve on the end it makes it easy to fill, a Foley catheter just has a cap which you can close when not in use. I presumed this was just going to be a temporary fix until they could do it properly. Fortunately the Foley catheter went in much easier and painlessly. Well… not 100% painlessly because I was still pretty sore from the previous botched attempt. But things were okay for the time being.
To Sleep… Perchance to Dream
Dad had to leave before they got the Foley inserted but I told him he could go. I have an archived iPhone message where I told him to turn the TV on AMC channel so I could watch The Walking Dead and I told him to tell the nurse I was ready to get back on the ventilator. I was hopeful that I would not have any more personal drama for the evening and could just watch some good juicy zombie stuff on TV. Unfortunately there was more drama in my life to come that evening.
Since I had had the trach installed on December 7, I spent most of my time connected to a ventilator. The plan was to gradually wean me off of the ventilator and eventually install a device called a Passy-Muir valve that would allow me to talk normally. I had always presumed however that I would still need the ventilator at night in order to sleep. For 25-30 years I had been totally dependent on a CPAP machine in order to sleep at night. There was no way I could get comfortable and breathe well enough to get to sleep without some sort of respiratory support. When I had first agreed to the trach, I presumed possibly there was a way I could use it with my regular CPAP. I should’ve asked but I didn’t.
On the evening of the 11th when I was ready to get back on the ventilator so that I could go to sleep, the respiratory technician didn’t want to do it. He said that the goal was to get me off of the ventilator as much as possible.
I could not have been more blindsided. Nobody had ever indicated to me that I would be expected to be COMPLETELY off of the ventilator especially since I had been so dependent upon the CPAP. They tried to explain to me that the CPAP was designed to keep your upper airway open. It keeps your throat and upper airway from closing. When it closes it causes you to stop breathing. That is what they call sleep apnea. Because I had the trach, I would not be breathing through my mouth or nose anyway so theoretically I didn’t need the CPAP.
However even though I needed the CPAP to keep my upper airway open, I was also using it to assist me keeping my lungs inflated. In many ways I had been using the CPAP as if it was a ventilator. I needed it to get volume in my lungs. Of course trying to explain that in an iPhone message typed using switch control was nearly impossible. Here’s all I was able to say…
At home I’ve been on cpap for 30years
I I need it or I will never be able to sleep without it .
I don’t use cpap for snoring . I need it to keep my lungs inflated
We will figure this out tomorrow
In between each of those sentences lots of other people were saying lots of things and I couldn’t participate much in the discussion. The bottom line was they agreed to put me on the ventilator at least for one more night.
As if I didn’t have enough problems, sometime during the night that night, my nurse call switch quit working. Fortunately I did not need it much during the night. The nurses were in and out and I slept as best I could although my mind was racing and I was getting very furious and very upset. The inability to talk was just too much for me to handle. The pain from the botched G-tube insertion, the argument with the respiratory people over the ventilator, it just all was weighing down on me too much.
Planning to Leave
I don’t recall how well I slept at night and I don’t think it was very well. My mind was racing about all of the things going on. I had decided that I need to put my foot down and get on that talking valve right now. There were too many things going on that I needed to talk about. Amidst all this on the morning of the 12th we had a visit from a woman who was my case manager. It was her job to prepare me to get out of the hospital and to give me whatever support I needed once I got home.
I was getting well enough that I really didn’t belong in the ICU. However they have a rule that on a regular medical floor you’re not allowed to have a ventilator. So they could not move me from ICU to one of that regular floors. The alternative was to move me to a different hospital called St. Elizabeth Ann Seton. Actually the technical name is “St. Vincent Seton Specialty Hospital”. It’s located just a couple blocks down the street from the regular St. Vincent Hospital where I was. While I would’ve preferred to stay in regular St. Vincent, if the rule was there could be no ventilators on the regular floors I really didn’t have a choice.
We also discussed (or rather they all discussed in a way that I could not participate) the fact that I was going to need a ventilator when I got home. According to the case manager, the process of getting a home ventilator takes 2 weeks minimum! At first I presumed that delay was to get Medicare/Medicaid to approve the device. I thought that was insane. When I needed a CPAP they just called up a medical supply place and said “Get this guy a CPAP” and it was there in no time. I later discovered that the delay wasn’t necessarily the insurance issues. It was a whole complicated process where they have to come to your house and make sure that your electrical system is okay, train your family members to operate the equipment, the whole thing was a mess.
At one point I got a visit from Dr. Chad Davis. He had been the surgeon who had done my bowel resection back in 2006 as chronicled here
I really liked Dr. Davis as you can read in those previous articles. He was there to report on my G-tube situation. The previous night after they got the Foley catheter inserted in the G-tube hole, they had taken an x-ray to make sure that it was in the proper position. He had read the x-ray and came in to tell the nurse that it was okay to start using the Foley to feed me. The nurse looked at him like he was crazy. We had already heard the results of the x-ray and I had had 2 feedings already. The nurse said to him “This Foley is just temporary right?” Much to my surprise and disappointment he said “No… It will be okay. We can just leave it in.” My reaction runs “Like hell you will!”
This G-tube versus Foley situation only furthered my frustration that I could not discuss these issues. Decisions were being made with little or no input from me and that’s not the way I operate. I was depressed, angry, frustrated… there are not enough adjectives to describe what I was feeling. So I went about composing several messages. Here are the contents of those messages courtesy of my iCloud archives.
Here was a message I wrote to dad when he arrived the morning of the 12th…
News from over night
I took more laxative last night and it will kick in sometime today so be aware.
Surgeon says folly cath in stomach is not temporary but I want it replaced with proper kind
Here are series of messages that I wrote expressing my anger and frustration.
Note for doctors. Nurses, everyone,
I need to be able to talk. Too much going on and I can’t deal with it by phone! I’ve got to be able to talk as soon as possible! Everything else can be resolved once we get me TALKING!!
If you’re wondering “is he pissed off?” The answer is YES.
Sorry. I’m not blaming you or anyone. I just need to discuss too many issues that can’t be resolved by twitter-like messages.
Can we rig something temporary such as finger in hole just so I can discuss issues?
issues I need to discuss with doctors
I’ve already said I want to talk but if I can’t then I will have to type. I’m preparing multiple messages in case we can’t get me talking but these messages don’t fully address my concerns. That is why I want to talk.
I’ve been on cpap over 25yrs and experience says I’m totally unable to sleep without it. I’m aware its primary role is open upper airway but I feel I’m also using it to keep my lungs inflated. Its hard for me to believe that I could sleep without mechanical assistance. I feel that the cpap has been working as more of a vent and I’m dependent on it. I’m willing to try sleeping without vent or cpap but I’m highly skeptical. I hope to try it nap this afternoon but ironically I slept really well last night.
issue #2 vent
I did all afternoon yesterday but required multiple trach suctioning throughout the day. I’m doing well today but still need trach suction from time to time. Do you have concerns that my need to suction is still ongoing?
Issue #3 G-tube
Last night I believed that use folly was temporary but the surgeon Dr.Davis said it can stay. I’ve had him before and I like him but I don’t agree with hims this time. I really want a proper g-tube of appropriate length and diameter and with a valve like I had when I came in here. I’m willing to go down to radiology if needed. Last night surgery residents hurt like hell jabbing around blindly.
I’ve taking things one day at a time but I feel blinded by some of these issues (such no more cpap). I need it discussed completely so I’m prepared. After I began writing this the case manager came in and raised a dozen issues that had not yet been discussed. This is why I need to talk.
I think the main person who read all of these messages was the young female resident Dr. Heaven. She took the time to read the messages and she understood that I was really serious about all these issues. The nurses were also well aware that my whole attitude had changed. One of them actually expressed concern that I wasn’t my usual cheerful self. I have written a separate message that repeated that line about “If you think that I’m pissed off then you are right.”
The nurse said I needed to be able to look out the window to cheer me up or perhaps to watch some TV. I found some time to write her a message as follows.
I have to giggle when you say I need a window. You should see my office at home. One window mostly closed. I like my man cave 😀
Regarding TV I’m too busy frantically writing notes because even once you get them here I’m not confident they will let me talk. 😠
That last line reminds me that Dr. Heaven had asked for the other doctors possibly the attending doctors to come in and talk about getting me the talking valve. At some point the attending doctors did come in and they agreed that we could try the valve. My recollection was that it was perhaps 1:30 or 2 PM before they arrived. Then they needed to write orders to the respiratory therapist to actually bring me the valve.
Meanwhile I had other issues to attend to. Some of the nurses were having a difficult time using my message board. They would point to each letter one by one rather than using rows and columns. So spelling messages to them was getting really difficult. Even if I was going to have the talking valve soon, I was still going to need the communications board at night when I was on the ventilator. I wrote dad the following message.
When you get a chance you need to show nurse how use the letter board. She has been pointing to every letter. Show her how we pick the row before picking letters.
She needs to train night nurse how to use board
There were a series of other passages that showed how inpatient I was becoming.
Can you see what going on?
Docs said they would call RT an hour ago
very anxious to try valve
lots decisions being made and I need to weigh in. Hard to do without talking 😀
I’m not sure if that last message was to my dad, a nurse, or Dr. Heaven. It was the last message that I wrote on my iPhone on December 12. In a Facebook message I also expressed my frustrations. In a message posted at 1:26 PM I said “doing well today but being unable to talk means can’t properly participate in planning. The issues are too complicated for brief messages I’ve been typing on my phone to my doctors”
The Prayer Request
I think it was about now that I decided to send some text messages to Judy to ask for prayers. So we have come full circle. This was the point in time that I talked about in the very first installment of this story. The first of two messages said
I’m feeling wonderful physically but not talking is looping me [out] of important discussion. loud noise from south side is my mom spinning in her grave 🙂
Judy said she literally laughed out loud when she read that. I then followed that up with the following message.
I’m been raising hell all day with some minimal progress.
Pray that they listen to the man with no voice.
In case you forgotten, you might want to go back and reread the first installment of this series which you can find here… It describes my emotional state on Monday, December 12 at 3:36 PM when I wrote those words. Basically when I reread what I had just written it shocked the hell out of me. It’s so perfectly described the sense of despair and isolation that I was feeling at that moment.
The next text message to Judy said
This whole situation is a mess but on okay. Hugs
That’s all I care about… your feeling better. The messes will be resolved. I will pray for patience and peace to you. Love.
There’s a saying that says “God always answers our prayers. Sometimes that answer is ‘No'”. Fortunately for me this time the answer was “Yes”. I don’t know exactly what time it was, but very shortly after that text exchange I sent her the following text message.
Just got “talking valve”! Damn your prayers work fast!
At 4:30 PM less than one hour after my desperate prayer request I posted this on Facebook.
Shortly after that Carol walked in and about freaked out when I said “Hello”. She was so surprised and relieved that I was talking. Soon thereafter dad left because he liked to get home before it got too dark. I had Carol grab my iPhone and we went on Facebook live to post the following video.
Before Carol left at about 7:30 PM we always had a series of things that I would ask her to do before she left. She would move the iPhone out of the way and plug it in to the charger. She would make sure I had my call button in my hand and my hand was propped up properly. We would have to get the TV on the right channel. Get my little “Chris Young users manual” properly in place where nurses could discover it. In the past it had taken us maybe 15 or 20 minutes to do all of this because I was typing instructions on the iPhone to tell her what to do. Now that I could talk, we were able to get everything organized for her to leave for the day in just a couple of minutes. The difference was amazing.
I would like to be able to say that finally being able to talk resolved all my problems but it didn’t really. I still had the wrong kind of G-tube in my belly. I was still facing the fact that I didn’t belong in the ICU but could not be moved to a regular room because I don’t allow ventilators. I still had the issue of when I need the ventilator in place of the CPAP at all or were they correct that now that I had the trach I didn’t need anything else to sleep. And if I did need a ventilator at home, it was going to take 2 weeks for me to get it. But at least now that I could talk, I can start resolving these problems one by one.
Our next installment of the story will probably be the last in the series. It will recount my final day at St. Vincent Hospital and my transfer to Seton Specialty Hospital. I will then start an entire new series of articles about my recovery at Seton Hospital. That story will not be nearly as dramatic or stressful as this one has been. It’s time to wrap up this story about the man who couldn’t speak. Because obviously… Now I can!