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When Jeff Sweat was about to be intubated, what was he told about what was to come? What information did his wife, Sunny Cannon, receive about the risks and reality of deep sedation? Was is it really like to “wake up” 3 weeks later? How have sedation, immobility, and tracheostomy impacted their family? Had they been allowed transparency and autonomy in Jeff’s course, what would they have chosen?

Episode Transcription

Kali Dayton 0:27
Okay, I quickly want to share some of my inspirations for starting and continuing this podcast, I started my nursing career in an ICU that keeps almost all patients on ventilators awake and walking. As a travel nurse, I quickly realized that that ICU is probably the only one in the world to make that normal. What is “normal”, in almost every other ICU in the world is to have each patient on a ventilator deeply sedated and left in bed for days, two weeks.

When I came back to the awakened walking ICU, I had a totally new perspective and appreciation. As a fairly new nurse practitioner. I sat in on a meeting that involved the head of critical care of a large multi Hospital Corporation, as well as rehabilitation services. The objective of the meeting was to discuss how to better track patient outcomes in order to know what happens to our ICU patients. After they leave the ICU.

I shared pictures and videos of patients walking on the ventilator and shirts and data collection that showed that almost 98% of survivors from the awakened walking ICU, discharged directly home from the hospital, compared to only 46%. at another hospital with the same Apache scores or level of sickness within the same corporation. The intention to collaborate and improve patient care was misunderstood. And a leading physician slammed his hands on the table and yelled at me. Well, you don’t have TBIs, and proceeded to be obstinate and defensive the whole rest of the meeting.

As a side note, at the conclusion of this failed meeting, one of the rehabilitation doctors left a final thought as a critical care rehabilitation and traumatic brain injury experts and said this will be controversial, but I insist that, “TBI patients are some of the most important brains to protect from sedation and to mobilize even if they don’t have any limbs. They should be up on a ventilator.”

Surely this physician thought that this would leave me cowering and hesitant to speak out again. But this was a powerful moment in finding my voice. And speaking out. I thought he was one of my main reasons for starting the podcast. Yesterday, I received an email from a medical director of a large corporation in California. He heard my interview on the ARRAC podcast. And that was his first exposure to the very idea that patients are not sleeping under sedation, and that we leave them with life altering disabilities. He was not defensive. He was moved. He emailed me to seek consultation services. When I spoke to him on the phone. He said, “You made me feel so bad, incredibly bad. It’s working for 45 years, I thought I was doing the right thing. This is the change we need to make. This is a legacy I want to leave before I retire. I want to prevent more harm.”

Ultimately, he and dozens of the other clinicians that have reached out wanting to change are the reason I do this podcast. Perhaps I started out wanting to stick it to the naysayers. But now my drive is centered in the good humble motivated eager clinicians that are excited to prevent harm and suffering. This has inspired me to turn these casual consultations into a real service. My new website is www.daytonicuconsulting.com.

It will offer signups for online webinars, in person presentations and even bedside support every team has different needs. But I would love to be there to help your team. Wherever you’re at in your journey, you can send me in as a hitman to present these concepts to your team and even have help remotely or locally. At rounds, we can find a way to help your team make the transition and be able to see your own patients walk out of the ICU doors Yet no matter what I do. Survivors are the ones that will inspire the change. We can talk research and data for days, but ultimately, we find our y in the survivors. So I present to you this episode, Jeff and Sunny, COVID-19 survivors. Jeff, Sunny, thank you so much for coming on the show. Tell us about your adventure and your journey with COVID-19

Jeff Sweat 4:57
Yeah, you know we were first of all, really careful throughout all of this. We took quarantine very seriously. And in fact, California was in at the end of a really large surge in COVID cases and specifically they had asked everybody to fully quarantine like not even hang out with anyone outside of your home even if even small numbers or cancel Thanksgiving cancel Christmas. There are people out in tents not able to go into ICUs. So we did. We canceled Thanksgiving. We canceled Christmas like with didn’t see any family all year. Well, we didn’t see any my family all year.

Yeah. And I, my my brother, who I’d been back mountain biking with every week, we didn’t see each other for two months during that period. And then towards the very end of this, my son and I went into a record store because he loves buying only villains only 16. And and I think that’s where we got it. We didn’t see anyone else. And we were both wearing masks. Everyone else was wearing masks, but just something happened.

The only other two places. We went to a grocery store once and a drugstore wants to pick up a prescription. So there’s only three places we went to that month.

But he was the one who got sick. So that’s why we think it was the record store. And he got sick first he got sick first. And then I started getting sick. And I felt like the our allergies, the Santa Ana winds are blowing here in California, which are always a horrible time for if you have allergies.

Sunny Cannon 6:30
So yeah, we were both like coughing and sneezing. And now it’s just the Santa Anas because that’s how January is. And our kid was like, in kind of sick for a day or two. But the main thing was he said everything tasted like cigarettes. And I was like, “Dude, how do you even know what that tastes like?” First of all, but second of all, “what?”

Jeff Sweat 6:50
Yeah.

Sunny Cannon 6:50
And that’s when we started thinking, “Wait, this might be more.” And then that night, I think maybe two or three days after we started having some symptoms. Jeff had 103 fever, and it did not break. But that was a Tuesday night. It didn’t break. And then Sunday morning. Well, three days. Sunday morning you woke up and you couldn’t walk across the hall. Yeah.

Jeff Sweat 7:13
So we decided to go to COVID test on like a Friday. We got our results back on Saturday. But even then it didn’t seem so bad there couldn’t deal with it. I was out working in the yard a little bit. I was breathing hard wasn’t a challenge.

Sunny Cannon 7:27
And everyone we knew who had COVID was like, Oh, it was like a bad flu or I had a sore throat. So we were just sort of expecting, okay, we’re not 70 years old. It’s just gonna feel like that. And we’ll move on.

Kali Dayton 7:41
Because how old are you, Jeff?

Jeff Sweat 7:42
I’m 49. And I’m also pretty active. So biker. Yeah, I was out twice a week mountain biking. And in fact, the first day I felt symptoms was when we were mountain biking with my friend which by the way, it was the first time we saw anyone in two months because it was his birthday. And even then I wear a mask, which thank goodness I did because I was the one who was gearing COVID. And he was fine. So it was it was pretty crazy. Like she said, I woke up I couldn’t breathe.

I called my doctor. And I think in sort of a classic understatement. I said, you know, I got tested for COVID It seems to be progressing. Could you maybe call in a prescription for me? He’s thinking maybe cough syrup, something she calls me back and just in like the five minutes we’re talking. She says, this is a Sunday morning. She says I can tell from the way you’re talking that you are seriously sick. You have to get to the hospital right now. And they are going to admit you to the ICU. And you know, so pack a bag basically, there was basically like a mash tent outside.

She wasn’t allowed to leave the car. I got in. They tested my oxygen and I was at 65. And you know, they said I’m really surprised you can walk and talk. And I said, Well, I’m barely managing. We went in, they took me in immediately to the to the hospital and I was admitted to the ICU maybe 10 minutes later. So they were they were on it. So she was circling the block.

Sunny Cannon 9:18
Because I was just thinking, “They’re they’re gonna do some checking and give him an inhaler.” And no, no, finally I gave up and I went home and I thought, “He’ll just call me” and you texted me like at midnight saying “I’m in the ICU.”

Jeff Sweat 9:33
I did actually call you a couple of hours or an hour. So as soon as they admitted me, I called you and said “don’t wait, don’t wait.”

Sunny Cannon 9:40
And I had already gone home. Yeah, well, thank goodness then that that worked out.

Kali Dayton 9:45
Wow. And so you were on high flow nasal cannula for a while for just the night?

Jeff Sweat 9:50
No, actually, for the first couple of nights. I made it basically two nights in the hospital before I was intubated. The first night was brutal, I didn’t sleep. So first of all, I’m an insomniac. And I don’t sleep under the best of conditions, they wouldn’t give me my, my sleep meds for anxiety and anxiety meds, which are all so everything’s off the chart there.

And then I couldn’t breathe. In that night, I sat there in the hospital bed, trying not to think about breathing, but only being able to think about breathing. And, you know, is you know, as having been there, they have two numbers that you have to pay attention to, you know, your, your oxygen saturation, and your breaths per minute. And if you don’t breathe enough, then you your oxygen levels dropped below 90, and alarms go off.

And if you breathe too often over I’m blanking on how many beats per minute or breaths per minute, but alarms go off. And so you’re sitting there just watching it, there’s no one else around you. Hours and hours of trying to sleep. And I tried to relax. And the only things I could think of are meditation, which require breathing. So I couldn’t I couldn’t relax.

I was just sitting there just in a spiral. And I moved to grab a pillow. And I started coughing, and my you know, and started. Yeah, started coughing and it took me probably an hour to recover from like me grabbing a pillow. And, and it’s just this kind of thing. It’s sort of there was this moment, when I realized that I had forgotten how to breathe. I couldn’t, I couldn’t do it the way that you’re supposed to do it. Because of all the stuff that’s happening to my body.

Sunny Cannon 11:55
And you were you were thinking if you went to sleep that you’re you might forget to breathe.

Jeff Sweat 12:01
Yeah, they were worried about that. They were worried that I that. And that was ultimately why they intubated me the second night. I actually did a lot better they given my sleep meds, but I was like sleeping on my stomach. And I would look up and kind of see the numbers. And I remember thinking like, “that’s really good breathing.” Like I was super proud of myself. And I woke up in the morning and the head of the ICU came in and he said, “Hey, you’re not doing super well, or we’ve got to intubate you.” And I just remember feeling, as I said, kind of betrayed and annoyed, you know, being annoyed, because I had worked so hard to breathe properly. And it didn’t matter.

Kali Dayton 12:41
And when they went to intubate you, they give you any options, discuss anything with either of you as far as how to be treated on the ventilator, what your preference was, as far as sedation went?

Sunny Cannon 12:53
It was your doctor called me and said, “This is the best thing for his lungs right now his lungs, he’s just exhausted, and he needs some rest. And he’s not going to be able to rest if he can’t breathe, and his saturation levels are just dropping every time he’s active. This is the best thing for him.” And I said, “Okay, well what does what does that mean?” And he said, “Well, we’re gonna have to give him sedation, so that he’s comfortable.”

“Okay, so sedation, like he’s going to be calm, like on a vicodin or Percocet or something like that? Or sedation as in asleep? Am I still going to be able to text him?” and he’s like, “Oh, no, he’s going to be ‘asleep’.” And I was like, “oh, oh, for how long?” He’s like, “Well, some people just need this for a few hours or a few days. Your husband’s young and healthy. I you know, just might be a few days.” Yeah. So that’s what I was told.

Jeff Sweat 13:56
So they didn’t tell me that at all. They told me that I was gonna be intubated and I knew sort of what it meant from like everybody else from watching “ER”. And so I knew from reading accounts of COVID that that meant you couldn’t talk to to your family. And I was worried that if things went sideways, that I wouldn’t be able to say goodbye, like with my voice, you know. But I always pictured myself conscious.

Sunny Cannon 14:22
He thought he was going to be awake.

Jeff Sweat 14:24
Yeah. And so….

Sunny Cannon 14:26
he went in thinking….

Jeff Sweat 14:27
he said, he said the same thing to me. He said, “You’re going to be sedated.” And then I’m like, “Okay, that seems fair.” – I don’t like sedation but I thought kind of like she said I thought that would be like valium or doped up on vicodin like after you get like a knee surgery or something like that. And and when we said goodbye when I when when I said goodbye to these guys. I said, “as soon as I’m able, I’ll text you and let you know how I’m doing.” And I planned on writing about this because I’ve been taking random daily updates about this whole experience. And Sonny said,

Sunny Cannon 15:04
“You’re not gonna….”

Jeff Sweat 15:06
“don’t think so.”

Sunny Cannon 15:08
So I had to tell him that he was going to “sleep”. And then meanwhile, he’s like, “what?” Like, “ya, no, once you’re under, you’re under”,- “what?” And his alarm started going off. And the plan was actually the plan was to have you intubated around 6pm. So that you could talk to your parents, your best friends and your family. And so I was busy setting up zoom calls, let’s get the best friend these together. Let’s get the family together. Let’s get the. And then you texted me and said “We have to do this sooner than later. Get the kids now.”

So I pulled them out of class. They were an online class. And they didn’t know at all what was going on? I had to tell them. Like, while the nurse was connecting zoom, I might. “So guys, do you know what intubation is? Your dad is….” and so we could share the video with you. You’re interested

Kali Dayton 16:05
Like on the CBS clip. Yeah, the rest of it on?

Sunny Cannon 16:11
Yeah. So I had to, I had to explain to them within just a couple minutes what was about to happen. And so they were hearing it for the first time. And then he’s saying goodbye. And the kids are still processing, and then the alarms and the alarms and the alarms and the alarms. And they’re like, We got to do it now. And I’m like, but you’re fa—-, whatever. And he’s like, “tell them, I love them….”

Kali Dayton 16:36
And you still don’t you didn’t know that that was going to be like that you’re going to be completely rendered… helpless?

Jeff Sweat 16:43
I didn’t know so. So it’s funny until you until we I watched the video again. You remember I remember saying no, I remember saying it by sort of, but I didn’t remember especially I was watching it. And I realized that I didn’t register even after Sonny said that I was going to be knocked out. Because she was kind of nice about it. She said the kids she was like I don’t think so. And and so I kind of still persisted. So really, that was a shock. And the doctor had told me he said, Look, you’re in really great health. A lot of people like you are maybe out for like two or three days. And so that’s what I thought might happen at the worst case scenario. And I woke up three weeks later.

Kali Dayton 17:34
And when people go into surgery, we know that you’re going to be so out that you’re not going to fill anything with surgery, right. And that’s a great use for sedation, right? But you make such a good point that we don’t tell people that they’re going to be that out.

Jeff Sweat 17:48
No, I think um….

Sunny Cannon 17:50
With surgery, you expect, oh, I’m having a C section. I don’t want to be awake. And they’re like, “No, you’ll be awake.” But let me tell you. Yeah, exactly. “I’m getting my tonsils out. Am I going to be awake?” “Oh, no, you’re going to be asleep.” Like they’re clear. You know?

Kali Dayton 18:08
I guess we’ll get into it. I did a previous episode on the right to know, you know, my concerns that were not transparent with patients or families. As far as I mean, Sonny got a little bit of a heads up and yet I have a problem with a doctor still saying the word sleep, that he’s going to be more comfortable. Those are very cultural terms that defy all research and survivor testimonials.

Yeah, that’s the misinformation you were fed Sonny. And Jeff was completely uninformed of what would happen. There was no warning saying hey, you might have some, you might get really confused. You might have these delusions, hallucinations. And not to mention there was no option given right? Hey, if you can choose if we sedate you, you are at increased risk of being the mid to ventilator longer, have massive atrophy of having delirium post I see PTSD, Post ICU, dementia, infection death. None of that was mentioned

Sunny Cannon 19:03
You could turn down the intubation. You could have done a DNI.

Jeff Sweat 19:10
That is just saying I’m ready to die.

Sunny Cannon 19:12
Yeah.

Kali Dayton 19:13
Which you weren’t. We could have given you options of, “Hey, would you rather be knocked out and then risk going into delirium and having this lifelong repercussion or disability? Or do you want to try waking up after intubation and see what you need? See if you need more something for pain, something for anxiety, we can continue your baseline medications for anxiety, we can increase it from there we can do things so that you can still text your family.”

Jeff Sweat 19:43
Yeah,

Kali Dayton 19:43
Say by if it’s really time to say goodbye. places you can get up you can get off the ventilator quicker. You might be able to avoid a tracheostomy. I mean, if someone had given you or Sonny i mean it’s kind of an emergent intubation, but you still had a day or two to discuss it. If someone had given you those choices, what would you have chosen for yourself or for Jeff?

Sunny Cannon 20:10
I think you need to go first because I have a lot to say about this,

Jeff Sweat 20:14
okay. I mean, I will say on one hand, Sonny went through some serious trauma as a result of this, because she was awake for everything that happened every like little turn that happened. And so I didn’t have that, like, I went to sleep. And I woke up three weeks later, and I did have some things in the middle, which we’ll talk about. But for the most part, I avoided, I would say, serious trauma, because I was just not in the picture.

That said, I think that if I had had the ability to have any kind of control over my destiny, in all of this, I think I would have gotten better, much faster. I am known for being sunny will tell you this, I don’t even hear the word. No, like, I’ve been told no so much my whole life growing up the way I did that, like I have just sort of like, just sort of like made myself immune to it. And I think that would have really kicked in. And I am stronger, you know, because of my size and things like that. Like I feel like I could have actually been a part of my healing as opposed to sort of like having people sort of randomly making decisions for me, and not letting me be a be a part of of that recovery.

Kali Dayton 21:41
Absolutely. And one of our survivors, I can’t remember which episode but the first ARDS survivor I interview that had gone through the process at in the wake and walk in ICU, he talked about what it meant to him to be able to connect with his wife. And he said, I’m not sure if she could have endured having me be sedated. But he was also a support for her as she went through this process of wondering if this was the last time she would see him if it was the last conversation to hear his voice. They were they, at that time was at his bedside. And he just felt like he was able to support her. And they supported each other during that process because he was still there. So I certainly what would that have meant to you? And what would you have chosen?

Sunny Cannon 22:25
Well, Jeff, and I have a right we have a thing. One person is allowed to be crazy at a time one person is allowed to have their life upside down at a time. And we trade every few months. You know, he’s an author. So when a book is due, I drop as much as I can to help him make sure he meets his deadlines. And I’ll read every chapter and make sure if there’s food coming to his desk, I teach. And so during midterms and finals, I’m a basket case Oh, and the first week of school on a basket case. And this guy’s helping me film what I need to set up my website. He’s feeding me making, you know, and that’s we have this rhythm. That’s how our life works.

Well, COVID knocked my life upside down on March 13 Last year, because all of my classes had to go online with two days notice. And I don’t teach a thing that I can just put online, I had to record pre recorded lectures because nothing could be live. And pre recording lectures for four classes. And each class is normally six hours long. I was working 8090 hour weeks recording, editing, posting, making sure the videos are accessible for Deaf people, for blind people for whatever, like all this extra work.

Whereas normally I just walk into school and be like, Hey guys, what are we doing today? Right. And then at the end of my semester, I thought I have a summer off. Nope. I don’t because our school Chancellor decided that every single instructor that teaches at our college had to be officially certified to teach online. That was 625 instructors. And there were two trainers on staff. So they recruited me to be a trainer that summer and I trained for different sections of instructors and it overlapped my finals. It overlapped my first week of the next semester.

So from March 13 until just about Christmas. I didn’t have one day off. Not one Saturday, not one Sunday. I was working till midnight, most nights Christmas hit. We did take a little vacation and then I was just in bed. I was a basket case. Then we got COVID Then Jeff went to the hospital and my school started two weeks later So I had to choose whether to find a substitute, Cancel all my classes, which would mean, I don’t even know what that meant, do I not have an income? And he’s self employed? So like, what’s that all about? And then I’m thinking, Okay, I think I probably have enough sick time. But then wait a minute, I have these students that need to graduate, and I don’t have a sub for them, I couldn’t find somebody to do all that garbage, I was doing 80 hours a week of recording. And these students I’ve known for years needed to graduate.

So I’m like, “I have to do this, I have to teach.” So while I’m managing his care, and you and Mobley, having conversations with the doctors and reminding them about, “hey, he needs this Med, and this Med and this Med,” and then trying to be the mom of three teens who are going through their own nightmare. I had to do all this extra ridiculous amount of work, and I didn’t have my rock.

And I don’t think I slept for two or three days in a row when my term started, and then once it started, I would record and then I would edit. And sometimes I’d remember to post the video. But more often, I would wake up with like keyboard face and the sun shining in my office window. So I spent most of my nights at my desk with my phone next to me waiting for the doctor to call. We got one call a day. And it was whenever the doctor could call that when one call a day. I couldn’t visit you know, and meanwhile, I had COVID My kids all had COVID.

But when you teach you you don’t just get to take a break and be like, I can’t start this semester right now. Life doesn’t work that way. That’s up to the guys later. Yeah, like, Oh, so sorry, you can’t take this one last class to graduate. That means you can’t. That means you have to wait a whole nother year again, because we only offer once a year sorry. So sorry, my life is more important than yours. Like that doesn’t doesn’t work that way. So

Kali Dayton 27:13
What would have meant to you go in and see a zoom call from Jeff, even if you couldn’t hear his voice?

Sunny Cannon 27:23
Oh my gosh. I remember the first night he was intubated. I had the call from the doctor. And then I just thought that was it. And you know, I hung up and I’m sobbing and taking notes. And I had promised Jeff that I would keep copious notes and inform his family and inform friends. And so I just picked up where he left off. And so I just my catharsis was to write and just to put it all down and share.

And I remember the phone ringing and emphasis nurse. And she said, There’s a beautiful sunset outside. And I just turned his bed so that he could feel the sunset. She’s like, I know he’s asleep, but I hope he can feel this gorgeous sunset. And she’s like, and I’ve also set up a zoom call for you and like what she’s like, because he needs to hear your voice. He needs to hear you as much as it sounds like okay, I have stuff to do. But yes, so I just sat there and talked for like an hour. And then I talked with his nurse and oh my gosh, she’s the best Her name was Honey, honey and sunny. Oh, she was amazing.

But like, if Oh my gosh, if I could have just been texting with them going. I don’t know what to do. This one particular child is having a really tough time today. What do I do? I’m having a tough time. Like I needed a co parent. I needed a partner. I needed somebody to to cry too, because I didn’t have someone to cry to. Yeah, she had to kind of be things were already really strained with family for political reasons. So like I was just alone.

Jeff Sweat 29:08
Yeah. And she was she was carrying everything. Wow, everything.

Kali Dayton 29:15
And even in normal circumstances not having your rock.

Sunny Cannon 29:19
No, and it was already abnormal. I was already I had nothing left. I had nothing left. And so did then have to like suddenly turn on and be this advocate and he know you gave him the wrong medication at the wrong time. You gave him the wrong dose. No, no, he needs that at night and that one in the morning. got it wrong.

Kali Dayton 29:41
Yeah. Families are in during the central part of the ICU team and we would cut them out. Yeah, you already had COVID Yeah. Gonna be in the COVID unit. Yeah.

Sunny Cannon 29:51
Oh, and that’s the other. That’s the other thing we talked to in a wonderful, amazing Dr. Rana Oddish. She wrote If the book What was it called? Shock and shock, Poli, you need to read that book. If you haven’t I need to have her on. Oh, she has such a lovely, gorgeous, amazing human being. She was saying a friend at another hospital, was having his nurses sneak down PPE gear to the wives and sneak them up. Have them be in there. And he said, Oh, what was it? So our hospital had a 29% survival rate for intubated. COVID, which is much better than the 50/50. I read about.

Jeff Sweat 30:36
Yes. Oh, no. They had they had…

Sunny Cannon 30:39
29% mortality, mortality. Right. Right. That’s understanding. Yeah. And this particular hospital was like down to like, 7%. Yeah, it was awesome. And it’s not that they were still sedating patients, because that’s what they do. But it was family involvement. And the family involvement was keeping the delirium more away.

Kali Dayton 31:02
And we had an episode with Louise Bezdjian, talked about a patient that was maxed out and on ventilator settings. They brought the family in only because it was supposed to be end of life. He was supposed to be dying. But his family came in the next day. He was just about excavated. Yeah, they said I needed them. Yeah, that’s how powerful family is we take out the most potent medication we have to wear off delirium to improve survival.

We took that away during a deadly disease. Yeah, yeah. What sense does that make, and we increase risks of post ICU PTSD for the patient being under sedation, but also your family and the family. That’s how to separation, that kind of heartbreak, stress impacts outcomes all around. So you’re going through this whole health? Yep. Outside of the hospital, we talked about the hospital being a war zone, but you were living in a war zone. And Jeff, what were you experiencing? While you are quote, unquote, “asleep?” And quote, unquote? What was going on in your world?

Jeff Sweat 32:02
Yeah, well, so first of all, I don’t remember a single thing while “asleep”. Like there was just nothing. And I don’t know if that’s common for patients or not. But there’s no dreaming. I don’t remember a single dream.

Sunny Cannon 32:19
Oh, real quick, though. Jeff’s a big guy. Six. Yes, six, five, he needed an absolute ton of sedation, like much more than they expected. And I was like, you know, my dentists mentioned something about people with redheaded genes needing more medication. But then somebody was like, Oh, I heard about that. And they looked it up. And oh, yeah, that’s actually true. I’m like, well, he’s got red sideburns and half his family’s their redheads. And they’re like, that’s why we have to keep giving. So he was on bucket loads of five different meds. Yeah,

Jeff Sweat 32:56
My ICU director normally likes to wean people off sedation, as soon as possible. She’s pretty aggressive about it. And she came on to the case, and, and she’s, and I had warned them in advance, this was going to be something you’d have to worry about. And they and she said, when she came on, they said she she started talking about taking me off, like being more aggressive. And they said, Yeah, that’s not gonna work. Like this guy is going to need everything you’re throwing this way.

Kali Dayton 33:25
Because every time you started to come out of sedation, what was your behavior, like?

Jeff Sweat 33:31
So it was it was they were afraid, they would kind of bring me up and put me down almost immediately, again, I, at the end of this day in the hospital, the respiratory therapist came in who had been part of one of those kind of efforts to wean me off sedation. And, and she said, I remember you from this. And I said, Well, it was I like, like, I’m just curious, because I was starting to write down, you know, kind of like memories, right? People put things together. And she’s like, she’s like, “Oh, you are a wild one”. Like, she said, “the second you woke up, you would try to stand up, you try to leave the bed”. And that’s when they started strapping me down, because you were strapped down while you were asleep. Well, yeah, I didn’t know that. But that’s why they did yeah.

Kali Dayton 34:18
You had no idea it was going on. Right?

Jeff Sweat 34:20
No, I had no idea. And then she said, The other thing that I did, which she had never seen anyone do before, is that I would make what she called farting sounds like into the, into the into the tube. And I remembered that and I told her that and I said, I was trying to talk to you.

Like it was trying to communicate and I couldn’t you know, and so, you know, when he asked about kind of what I remember, what would happen is I would I woke up in these like series of flashes, and and the room always seemed dim, and I don’t know if that was my eyesight, eyesight or like they’ve literally lowered the lights for me, I don’t know. But it was always dark eyed. felt, and people would come by me and these yellow PPE outfits.

And it felt like I was in a carwash like with like the brushes kind of coming by, like everything was just kind of flashing by. And this probably happened over the course of many, many days. But I remember people leaning over me and saying, you’re going to be okay, we need you to calm down. You know, like it was all kind of stuff at one point and nurse said, “Hey, I know you’re really agitated. But you’re doing better, you’re gonna be okay.” And she kind of used the good cop, bad cop. She’s like, “I think you’re doing awesome. But the new nurses coming on in an hour. And I don’t want her to think she has to make your own judgment. I don’t want you her to think that you’re not ready to kind of move to the next level.” So she’s use that as like a way to get me to behave. And it actually did kind of work.

Kali Dayton 35:56
Because you wanted… You wanted to be awake. You want it to be aware of your environment.

Jeff Sweat 36:01
Yeah, and everybody, you know, everyone’s dressed in yellow. They’re wearing face shields. They have they have they look like minions, they’ve got the looks like human minions is really the best way I can describe it. That’s what I thought when I was seeing it. And you know, if you’re a little bit older, it reminds you the scene and ET and justice horrifying, you know, just people leaning over to theirs. You can only to their eyes, they have no personality, nothing. And and I didn’t know who these people were they weren’t introducing themselves to me.

Kali Dayton 36:32
And you’re just getting like foggy clips. Right? You’re just kind of like barely getting to the surface.

Jeff Sweat 36:37
I happen to be awake. back down again. Yeah, yeah. It’s almost like….

Kali Dayton 36:43
Someone like your heads underwater, they bring you out, they pull your head out of water, just enough to barely get a breath. They don’t really get to, like, recover, and they send me back down.

Jeff Sweat 36:53
Yeah, and I would say the point of the water is a really good metaphor, because you kind of have that like gasp of like, “I’m alive. I’m awake,” and like you’re trying to like make sense of things. And then it’s just like, boom, you know?

Kali Dayton 37:05
Yeah. And if you had been able to stay awake longer, gather yourself a little bit more and communicate. How much would that have helped being able to be off sedation, or just your agitation if you could have really been able to express yourself or and get questions answered?

Jeff Sweat 37:25
You know, it’s something that like, I would say that communication is something that, for me is the most important part of my experience. And the lack thereof, I obviously is what led to, I think challenges. So first of all, I don’t remember anyone saying to me at any time, as they’re leaning over me and dealing with us, I don’t remember a single person saying, here’s what’s happening.

And here’s what we need you to do. And I think if I had known those two things would have made a big difference. What happened instead is that people would be looking over me, they wouldn’t tell me that they didn’t tell me the names. And maybe they told me the names. But I don’t remember because I wasn’t coherent enough. The first time. And so…

Sunny Cannon 38:10
The first day that you were able, you were really lucid. So I had conversations with you for a few days that I want to say it was day four or five. He was really lucid for the first time since he went into the hospital. And he had the trach tube in. And we were on Zoom. And I was asking him questions, and he was attempting to type the answers. Or like I’ve asked yes, no questions, and yes, no. And it was the craziest conversation. Because I read his lips.

And he said, “What happened to me?” And I was like, “Well, you have you remember you have COVID?”

“Yeah.”

“Well, they had to intubate you, and you have a tracheostomy.”

And he’s like, “no, no, what happened to me?”

“Well, you do you want to know how long you were asleep?”

” Yeah. ”

“Are you sure you ready for this? Do you want to know how long you were asleep?”

” Yeah.”

And I said, “All right. Well, pretty much it was like 21 days but really 23 days when you count all the testing and whatever, what you lost three weeks.”

And he had no idea no idea. And none of them none of it and so I started going through and and saying okay, “let tell me what you need to help to make you feel better.”

And it took about an hour and a half. But we came up with a list turn off the damn TV because they had this TV on just do that. It was making him so anxious. Get rid of the restraints, because that was making him angry. Can be my phone. Handy. My laptop. Whatever. I’m thirsty. I’m hungry. What so we had this big ol list and the second year nurse came in. I’m like, get over here. I have a list. We have some things we have to go over at the bedside or is this over? Zoom it over zoom.

Kali Dayton 40:08
Wow.

Sunny Cannon 40:09
And I was like, “Okay, number one hand, Jeff his phone.”

“Well, he’s not gonna be able to use it yet.”

I’m like, “Let him decide. Let him work on it. And I didn’t try. Like, isn’t that occupational therapy?” I’m like, “hand him his laptop. He’ll be able to handle that better.”

“Oh, we probably not” and I’m like, “hand it to him.”

And I said, “remove his restraints.”

“Oh, well, we’re afraid he’s gonna pull out whatever.”

I’m like, “Jeff, will you agree right now to the nurse that you’re not gonna pull any tubes out?” He’s like, “Uh huh.”

I’m like, “Get rid of the restraints.”

Jeff Sweat 40:39
Yeah.

Sunny Cannon 40:40
And so we went through this whole list. But meanwhile, I’m having this conversation with Jeff and his nurse. And I think, “This is okay. We’re making headway.” But Jeff has a whole different experience had. We were having a different conversation.

Jeff Sweat 40:54
Yeah. So there’s a few things in there that I want to talk about. By the way, she was much nicer to them. I was nicer to them than what she sounded like right now.

Kali Dayton 41:02
But you felt that kind of desperation?

Jeff Sweat 41:04
Yeah, I always say she was like a hostage negotiation. She was just like, “all right, can we do something?” It was like this. I’ll just do it really quick. Because it was awesome. I’m sitting there because I couldn’t speak and she was like, so can we do something about the strengths? You know, and then she’s like, Jeff will agree to to do so it was like that, you know, and and it was pretty awesome. Like, it was amazing to see.

Kali Dayton 41:27
And amazed that you understood him over zoom with lip reading.

Sunny Cannon 41:30
We’ve been married forever.

Kali Dayton 41:31
Right? You speak, Jeff. And so why wouldn’t someone want that translator there at the?

Jeff Sweat 41:36
Absolutely, absolutely. So but she mentioned something about the fact when when she when I asked, “What happened?” and she told me that I had a tracheostomy. And she was, by the way, had to make that decision while I was unconscious, and was really upset by that and was worried that she’d done the wrong thing. And I call her she’d done the right thing.

Kali Dayton 41:55
But how much would have helped to be able to one for you to make your own decision to to discuss it together during that process?

Jeff Sweat 42:03
Yeah, for sure. Well, the thing is, I didn’t know that happened in that cause a really big problem. Because I woke up after some period of sedation. And I could tell something was different. I didn’t know exactly what it was, but I knew that I should be able to talk. I didn’t feel the tube in my mouth.

So the nurse comes into the room, I try to talk to her. Nothing comes out no sound. I think that something’s happened to my vocal cords. I think that they’ve been damaged because of COVID that they’ve been cut because of some procedure. I don’t know. So I call the nurse over. And I try to mouth the words, I can’t talk.

And she doesn’t understand it. And I point at my mouth over and over again. And she says, “Is it your, your your teeth, your teeth hurt?” I’m like,” no, no, no, no.” And I said, you know, trying to point again, and she said “Is it your tongue- does your tongue hurt?” And finally, she says, “You know, I’m sorry, I can’t understand you.”

So I make motions to to have her bring paper over, she brings me over, you know, a Sharpie, and a big piece of kind of cardboard, I really don’t know what it was. And I tried to write, I can’t talk on it. And his hands are like this.

Kali Dayton 43:28
After three weeks of not moving.

Jeff Sweat 43:33
My hands are shaking, but also I just don’t have much depth perception of that point. And we used to play this game, and we were in church, like we would sit next to each other. And we would write words on each other’s back using just our fingers. You try to guess by touch, like what it was, but it was really challenging.

So it’s all in the same place. And you don’t really know where when we’re being honest. And it was honestly kind of like that with with these letters that I was writing and they’re all on top of each other. And so if you looked at it probably would look just like this, like random abstract art thing. You know,

Sunny Cannon 44:09
The nurse isn’t following along. But he’s writing because on top of, because he couldn’t move his hand it was just one letter on top of the other on top of the other.

Kali Dayton 44:18
It is definitely a skill set in the “Awake and Walking ICU”– the delirium handwriting. It’s a skill set. It truly isn’t. So there probably weren’t used to that.

Jeff Sweat 44:26
Yeah. And so they could I could I just kind of gave up I couldn’t communicate that and it wasn’t until I woke up for good and Sunny was talking to me that I finally realized that I had a tracheostomy, and that’s why I couldn’t wasn’t able to speak before. Nobody told them so I knew that the tube was gone, but I didn’t know that I still had something that was preventing me from speaking.

So if someone had said, “Hey, you had a tracheostomy. It was successful. You’re not gonna be able to speak for a while, so don’t worry about it.” like, “that’s going to be a process,” then like all the things would have made sense. In talking to some other doctors since then, you know, they all said that what they did, in those moments when patients are coming out of sedation, they have a trained, you know, respiratory therapist, and a nurse, or nurse, sometimes both, to essentially walk you through it, to say, “this is what you’re experiencing. This is what you’re feeling like, this is what we need you to do.” And I think having that kind of level of communication, and having that kind of involvement in your own recovery is really crucial.

Sunny Cannon 45:45
But meanwhile, when Jeff asked, “What happened to me, where am I? Why am I here?” I was thinking, “He’s asking what’s going on with my neck? Why am I in this room?” And we had a whole different conversation. He had no idea where he was. He thought he was wanted for murder.

Jeff Sweat 46:09
Yeah. So you mentioned

Kali Dayton 46:15
You didn’t have experiences maybe while you were sedated, but you coming out, you were delirious.

Jeff Sweat 46:19
I was in completely different places when I came out. And so this happened, both of their two episodes. I’ll tell you one, that’s more absurd. And then one that feel felt very real.

But there were things that happened after in some cases that already talked to Sonny, and, and I was starting to get better, but they were still I was still going under for periods of time. And and they were full on hallucinations. And interestingly, both of them are about me leaving the hospital, like I clearly was ready to go in my brain. And the first one, I was being transferred to hospital to Portland.

And I was actually well enough that I could get on a plane I remember literally looking kind of like leaning against the window sleepy and looking out as like, you know, la si was taking off. I landed in Portland, for the very awesome reason that they had asked me to be a halftime guest for the Portland Trailblazers. I felt so bad.

Yeah, right. Because I guess that’s what you want is a COVID survivor. There in the middle of a really crowded arena. I was replacing former Trailblazer star who was there and he was like a local guy who owned a chicken chain and had hair like MacGyver, if any of you guys ever remember that show, and so like started think it was like chicken MacGyver.

Anyway, I’m sitting in a hotel room waiting for for this and I’ve got a nurse there. And I keep on saying Shouldn’t we be going over to the stadium at this point. And they don’t do anything. The nurse is just still kind of waiting. She’s sitting next to me like eating her dinner. And finally, I see like the game starting and I see literally chicken MacGyver in the crowd, ready for him to come on for his thing. So I was really annoyed. And I look over and she’s actually eating chicken from his chicken chain.

So it was sort of like felt like just betrayal. So that was one where like, I did fit finally figured that wasn’t real. But the second time was pretty terrifying. So I was being transferred to a hospital in Northern California. And it was, I think, something that I had requested for some reason, it seemed like the right hospital. And I got up there, they actually flew me on a live flight. But they had I was staying in like a hotel room or hospital room early, not sure because that part was a little big.

And I had my phone next to me. And I you know, I wasn’t sleeping well to this whole experience because of my insomnia. And I got a call at 5am a phone call from someone on my cell phone, and I kind of missed the call and I put it down and start to go back to sleep. And then they called me again. And then like that really woke me up. And so I’ve made me mad and I called them back and I yelled at him and I said you can’t do that I don’t sleep well and I’m so sick.

I need my I need to be able to sleep and they kind of am but then I just hung up I didn’t bother to hear what they had to say or have an apologize. And I get a text on my phone about like an hour later when I wake up and said the person you were calling crashed as a result of that call and died. And we want to talk to you about charges of involuntary manslaughter. and which is we had someone who had something similar to have like she blacked out while driving a car because of a medical condition and killed a mother of three. And she actually served jail time for it, you know?

So like, because something’s house arrest, sorry, but yeah, but she has a criminal record because but and and so I wake up in a hospital room I don’t recognize it’s in this new hospital. They remember the address and the logo and all this stuff, the conversations happening. And I’m sitting there waiting for the police to come. And they don’t come and in no one’s mentioning it. But I’m sitting there going like, why am I here? Why am I in something that’s not an ICU? Clearly, I need to be in a better place. I’m trying to talk to them, but I can’t talk to them. And that’s when our zoom starts.

Sunny Cannon 50:55
And he said, “Why am I here? What’s happened? What’s going on?”

Jeff Sweat 51:00
Yeah,

Kali Dayton 51:02
Some of the survivors share that it’s not just like a…. it’s almost like it’s not just a delusion. It’s not just a nightmare. Like, it’s vivid. It’s so real.

Jeff Sweat 51:09
Oh! It was it was…. well, it was part dream, parts of it clearly a dream. In parts of it. Like the signage is actually different. Like, they write every day on the glass door, like kind of whatever kind of messages, they need leave for each other. And they were different. They were specific to that hospital. Like, you know, it was like, talking about certain kinds of classes, they were teaching that they weren’t actually teaching, you know, like, it was this me filling this in.

I was hearing like a radio broadcast. And that was, you know, it was for the for this for like, like an Evangelical, the hospital that I was staying in was like this Evangelical, Lee own owned and hospital that had a lot of scandal about the way they’re treating patients. And, and so and I was like, and I was kind of hearing about this on the radio, while I’m like realizing that’s where I’m staying. “Why did I pick this? Why do you think it’s a good idea?” You know, and study calls me, or we call a call her more talking. And I do ask her that. And so I say, “What happened?” Because she thinks means what?

Tracheostomy, Yes,

Tracheostomy, yes. Which actually is legitimate information I should have had. But then I said, “Why am I here?” And what I meant was, “Why did you let me go?” Like, like, “Why did you think this is a good idea for me to transfer as her mid COVID?” And basically, “Where are the cops? And what’s gonna happen to me now?”

Sunny Cannon 52:36
And I’m like, “Well, now you’re gonna recover, and they’re gonna send you to rehabilitation center.” And he’s like, but he couldn’t explain.

Jeff Sweat 52:44
Yeah. So I woke up the next day in the exact same room, which I haven’t recognized. And it was the ICU. And the signs were different. And the address of the hospital from the day before, and I was back to not like, there had been an address in the door. I remember like, literally, it was like, I remember the street number that it was that that was there.

Kali Dayton 53:04
So it changed the way you perceived your whole environment.

Jeff Sweat 53:08
Yeah, I was fully awake. I saw this with my own eyes. And the next day, it was different.

Kali Dayton 53:14
We give sedation because we think that it spares people, anxiety, trauma, stress.

Jeff Sweat 53:20
Yeah.

Kali Dayton 53:21
We think that the reality the ICU was so traumatizing that we better spare every one of that. Yeah. And yet, we’re so oblivious to these other scenarios that we send them into that perhaps I personally would rather know that I’m critically ill in the ICU than think that I had killed someone.

Sunny Cannon 53:38
Yep.

Jeff Sweat 53:38
Yeah. Well, yeah, I think like all things being equal, but it was also, you know, I’m not a person who is prone to anxiety, like I, you know, I, my day job is I in public relations, like I have sort of pride myself on the ability to like, keep a level head in any situation. And I suffered extreme anxiety in this and it wasn’t because I couldn’t handle the situation is because I was being held down. You know, like, I, the first one, if there’s one thing that I that, that I, that I know I need is the ability to be in control.

Kali Dayton 54:21
And you were stripped of that. And I had, mentally, emotionally, physically and physically stripped of that. Which I mean, and in the COVID unit of the “Awake and Walking ICU”, patients are sitting on their phones texting, with their hands tied untied. I’ve talk about a patient I refer to this often on the podcast, but it was a patient that cough so hard that their tube disconnected from their the ventilator to being disconnected from their endotracheal tube.

And they held it together. At first from the outside looks like they’re about to pull their tooth out, which didn’t make sense because this person had their coping mechanisms intact because they were never sedated and they got in there and said, “Don’t pull it, don’t pull the tube!” – and the patient looked at us like we were crazy and explained, “Are you joking me? I’m keeping my tubing together so I get air pressure from the ventilator. I know what this is for.”

Jeff Sweat 55:06
Yeah, like, yeah, they’re in, they’re in on it. Yeah,

Kali Dayton 55:10
They’re in on it there, they have their autonomy preserved, and they can sit there and scroll through Facebook, they can sit there and text and zoom their family at their leisure. I mean, COVID effects you. You know, the people come despondent and things like that, but they have the opportunity to be in on their care. And what would that have meant to both of you? To have? yourself?

Jeff Sweat 55:36
Yeah, it would have made all the difference. For sure.

Kali Dayton 55:39
You mentioned that you suspect that you would have gotten off the than Twitter quicker research would support that. But what’s your perception of that?

Jeff Sweat 55:47
I mean, Sonny can talk about maybe you can talk about, first of all what they were telling you. And I can tell you kind of what I was experiencing

Sunny Cannon 55:53
Every ventilator trial. Well, first of all, before that, you you were not handling being moved at all, like even just shifting a pillow. His sats would just drop. And so they had to use a ton of paralytics because he was just so agitated, just so, so agitated, so they had to keep them so far down. Just so that he wasn’t fighting vent. He wasn’t startling….

Kali Dayton 56:28
Do you know, his ventilator settings were?

Sunny Cannon 56:31
When I really started tracking it, it was I mean, at one point, you were at 100%. And what was it eight? a peep of eight? And the whole goal was to try to get him down to a five or a three, but they were needing to keep the pressure really high because his lungs are so much bigger than that what the doctor said the average five foot six person, so he was needing higher oxygen and higher pressure and more meds because he’s so big.

But that also meant that they had to keep them on this protocol longer. Because he didn’t meet the the requirements for when they felt okay about lifting stuff. And it was just this this sort of like chicken and egg thing. They couldn’t like reduce the pressure because his lungs weren’t.

Jeff Sweat 57:26
Yeah. So, you know, that’s a really good question. The I think the reality is, is that I woke up several times and had to be immediately put down because I love that word, use the word put down like I’m a rabid dog. That’s what to sleep. Right. But I was kind of like literally a threat to people. You know, I mean, these teeny, tiny, six, five, and at the time, when I went in, I was 250 pounds. You know, I was 200 pounds when I came back out, but

Kali Dayton 57:58
You were 250 pounds going in? You lost 50 pounds?

Jeff Sweat 58:00
Yeah,

Sunny Cannon 58:03
49 days. 50 pounds.

Jeff Sweat 58:05
Yeah. Which is great. Because honestly, I was trying to lose weight. And

Kali Dayton 58:10
You lost the wrong kind of weight.

Jeff Sweat 58:11
I know, But you know, but the the. So they would kind of do this bring me back up, put back down. And because I wasn’t, I wasn’t….. because I was anxious. And it’s interesting. Like I said this later, we interviewed our head of ICU for our book. And she said, and I made the point that if I had been able to manage my anxiety, I think I would have been only been on the vent for like, say three or four days. Like I think it could have come out pretty quickly. Or maybe a week. I don’t know. I don’t I’m not obviously not professional.

So I don’t know that. But I know that it would have been a lot faster. And she said, “Well, yeah, she’s like, but you know, the reason why you were had to be put down back down down each time was because you’re fighting the vent.” Which people that are wondering, some are people fighting the vent is because of anxiety. So really, it’s tomato tomato. Yeah,

Sunny Cannon 59:12
And you you had…. you were feverish for almost the entire time you were there. So they had him on a cooling blanket under a cooling blanket. And when he would wake up, he would be so cold and just very unbearably cold that you would start like banging your legs to try to kick the blanket off. And so the nurses would come in and be like now we got to knock him out again. “He’s agitated…”

Kali Dayton 59:40
instead of being told….

Sunny Cannon 59:43
hey, you have a 103 Fever…

Jeff Sweat 59:45
Well, they did say that but I was also like, “you know what, I’m not gonna die from a fever just let me like be comfortable here.”

Kali Dayton 59:52
Right I really feel like we can treat pain anxiety better when patients can communicate it to us. Yeah, I you talked about it sounds like you had some sort of ilius- like your bowels had stopped working, but probably because you’re on so much of narcotics- That’s stops your bowels- and so that’s really uncomfortable too. That increases your pain when your bowels don’t work.

So it sounds like potentially it had you not been automatically put on the crazy-train, you would have been able to use your coping mechanisms to be aware of your environment, work with Sunny on it, work with everyone, get your questions answered, not be in this crazy place. You wouldn’t have been fighting the ventilator nearly as much.

And that’s something that I think a lot of ICU providers don’t see. Because we automatically start sedation, we give them delirium. Now we take the back sedation, because it sounds like this facility was trying to do the A-F bundle, which is great. I think had a great team.

Jeff Sweat 1:00:41
Yeah, I really did.

Kali Dayton 1:00:43
And this initial protocol is difficult when you give someone delirium, then you have to manage the delirium later.

Jeff Sweat 1:00:48
Yeah,

Kali Dayton 1:00:49
That’s what that’s what you’re on this crazy train. The coughing, the agitation, the thrashing. When you already have tenuous lung function, when you have all this erratic breathing and biting, it affects your oxygen saturation. So you’re right, everything played into you being on a ventilator so long.

You lost so much lean muscle apparently, you had to have a tracheostomy, which is kind of provide a preference as well as far as timing to tracheostomy. There’s this cultural approach. I feel like it’s cultural….. that and it’s hard because in the “Awake and Walking ICU”, they hardly ever trach anybod.

But it seems like teams aren’t comfortable with taking down sedation until they’re trach’d. So I’ve talked about an episode on “Trach and Peg” I mean, if you if you won’t move me until I’m trach’d- then trach me right away so I don’t lose the muscle. But I suspect tracheotomies can be avoided if we don’t let people atrophy.

But the studies show that it’s it is safe to move people with endotracheal tubes –that may be tracheostomies are not always essential to be able to move people. And Jeff, you posted something about your tracheotomy tell us what it was like once you realized that you had a tracheostomy. What was it like during and after?

Jeff Sweat 1:01:56
So my tracheostomy for me was the biggest source of trauma in the entire experience for a couple of reasons. Kind of both during and after. I’ll tell you that during part, which was really pretty horrifying. And Sunny is not allowed to comment on this too much because it’s it will wind her up.

So, I was being transferred from the ICU to the floor for the first time in four weeks. My fever finally broke, they finally moved me up and I was COVID free and I was off the vent. So they had a new tracheostomy they had put in, and I remember feeling like a trach tube. And when they did it, they didn’t do with any kind of like sedation and like, I felt like the guy kind of just like shoved it in there. Right? But didn’t think too much about it.

Kali Dayton 1:02:47
The cannula exchange? Right?

Jeff Sweat 1:02:48
Yeah,

Sunny Cannon 1:02:49
There was a banging….

Jeff Sweat 1:02:52
I felt like he hammered it that. Yeah, but But I went up to a room doing fine. I had a lot of blood clots, like if people do on on COVID. So I was on blood thinners. And I woke up in the middle of the night, a lot of fluid in my lungs was really coughing a lot. And I saw I turned on the turned on a movie to watch or a super bad. And then I sort of like getting to the end of it.

Just trying to like trying to get myself able to fall back asleep. And he started coughing. And I look up the bed, like three feet away. And there’s a spot of blood on it. And I thought, Well, that can’t be good. And I coughed again. And it with my mouth closed this time. And it went everywhere. And I looked down and while I was coughing, blood was spurting out of my trach tube, spraying the bed five feet away, like everywhere.

Just everything’s covered. It looked like a Jackson Pollock painting. That’s That’s how intense it was. So I call on the nurses, they were going to come in anyway because apparently they get my heparin levels for too high. And so they came in, they gave me fluids to replace the significant amount of blood that I had just lost, and and kind of started to slow things down. And I kind of calmed down but you know, I’m at this point, legitimately panic because I am coughing blood,

Kali Dayton 1:04:28
Well yeah, you were hemorrhaging. Did you need a blood transfusion?

Jeff Sweat 1:04:31
I didn’t have to, but they did give me some fluids. So it wasn’t it that wasn’t so far, but they came back in. Or sorry, they went away. And I was watching something else. You know, this time it was Saturday live clip. And it wasn’t even a good one, which is super depressing to actually remember this every single time I have this next memory and I started copying again and it was worse.

And I describe it the way it was just like it was like if someone poured tomato soup into my lungs. That’s what it felt like had that silly extra gurgling. And every cough is like bringing more into my lungs, since I’m coughing more out. And I could feel the blood clots in my mouth with my tongue like I was cough, I’d probably like two dozen blood, two or three dozen blood clots that I was coughing up during all of this. And they come back in again.

And you know, there’s like, sort of like, not a certain amount of I do, but at this point, I’m completely panicked. And the nurse starts to leave. And I just said, I could still talk because it’s this new trach tube. And I said, You’re not leaving, you have to stay here until things are okay. Because I don’t dare to be alone. And they, they finally get it calmed down, everything seems to be kind of healing.

And they say, You know what, we’re going to take you back to the ICU for the day. They just have more capacity to observe you right now. Um, okay, fine. And come in the end guy, the same guy who did my procedure before comes in and first of all, does like a bra. bronchoscopy to see what’s going on. And he says, “it’s probably probably because of the, the new trach tube like, irritated”- things like this will happen.

He’s like, “So we’re going to put in a trach tube with the collar. So that if you do start coughing again, it doesn’t leak back into your, your lungs,” and I’m like, “Okay, fine.” So does the same thing. And actually, this is probably the one where he really hammered it in. Like he kind of pulls it out and then just like, shoves it in.

Sunny Cannon 1:06:37
But not like, “Hey, do you think you might want some painkillers?”

Jeff Sweat 1:06:41
and because my lungs are so this point, so aggravated. The second he does it, I cough up blood again. All over in this time, the assistant does sort of sit there… watching me. And you know, after, like after I’d done that, he did wait till I was done. But then they they just kind of left and I was literally had the old trach tube sitting on my lap. And I kind of like picked up I’m like, “oh, that’s what that was…”

Sunny Cannon 1:07:07
They left him and left blood with the old trach tube…

Jeff Sweat 1:07:12
on my lap…

Sunny Cannon 1:07:13
.. for a half an hour.

Jeff Sweat 1:07:14
Yeah. And my nurse wasn’t there. Normally, the nurses are there every single moment in the ICU, and they’re looking through the window at you. And she had she had gone to lunch and she came back. She walks in and I’m covered in blood. And she just says, “What did they do to you?” You know? And, and you know, Sunny…Sunny….

Sunny Cannon 1:07:34
I got a call at five o’clock that day to say, oh, there was a little bit of a thing. And it’s

Kali Dayton 1:07:40
“He’s back in the ICU…”

Sunny Cannon 1:07:42
I’m like, “What time did this happen?” “Oh, it started in the middle of the night. And I guess the procedure was around nine.” And I’m like, “It’s five o’clock! Isn’t this the thing I should have known about?”

Jeff Sweat 1:07:53
Yeah. Sorry, there’s a story that she could tell there…. But I think probably wouldn’t fit into a podcast. But she basically called them called the head of the current attending to talk to him about this the responsibilities of taking care of patients, which is really important.

And not everybody has a Sunny who can do that for you. They did come in. And I will say the actual I mean, first of all surgeons, right, but like, but when the actual doctors came in, they were incredibly gentle. And they did another bronchoscopy,. But it was very like, with full sedation view.

Sunny Cannon 1:08:33
and painkillers for it….

Jeff Sweat 1:08:34
They gave me painkillers. And they also offered me a chaplain or a therapist, so they need to talk to someone. And then I thought, “Well, that would have been nice to know that that was even an option three weeks ago,” like, well, when I was waking up, honestly, like, “I would have loved to have had a therapist, because that was confusing times”.

Kali Dayton 1:08:57
I’m gonna do a whole episode on how we need to include therapists, psychologists, all the actual mental health experts, and to these traumatizing settings.

Jeff Sweat 1:09:07
So one really cool thing that kind of happened at the end of this is we talked to the director of the ICU who’s pretty awesome. She’s amazing. And and I explained to everything that I just did. And I said, look, it’s pretty cool that you guys have like communication boards, and you have therapists and stuff like that.

I said, but I didn’t. I didn’t know first of all, that you had them. In second, I’m not sure I would have had the presence of mind to have asked for someone in a moment like that. It’s like it should have been just like, why don’t you like why don’t you just have some come in and say, “Hey, you’re going through a lot. Do you want to talk like, can we help you? You just had some trauma.”

And so the really cool thing though, is that after this conversation about communications ,about managing anxiety, the doctor set who actually does set the policy for the hospital said, “This is really great. I don’t know that I have heard this perspective from a patient before. And we want to start addressing things.”

So among other things, she sent me the communications board, which I had never seen and said and said said, you said, what kind of changes you to make? And I said, Well, honestly, like anything would have been a great than like me writing sharpies on the back of an old, like, printout of something. But like, if you’re going to do this, like you need to do things like you need to make the words bigger, because if you’ve got if your hands have tremors, like minded, you couldn’t press on like flick, the board needs to be like five times the size, you know, because

Kali Dayton 1:10:39
Vidatalk software?

Jeff Sweat 1:10:42
So I didn’t I didn’t get to try anything like that. Honestly, like, I know, there’s technology that lets you it’s called “iWriter technology: they use it for for paralyzed.

Kali Dayton 1:10:52
My daughter it.

Jeff Sweat 1:10:53
Really? Wow. So I was like, Well, if you know that COVID patients can’t talk. Why wouldn’t you provide something like this? Like,

Kali Dayton 1:11:01
I think because everyone that’s on ventilator sedated, so there’s no need for communication? Because they’re not human anymore?

Jeff Sweat 1:11:08
I guess? Yeah. Well, it’s kind of thing where it’s like, it’s like this point, we all have like phones with facial recognition. Like, I don’t know that it’d be terribly difficult for someone in the medical community. Let’s let’s make this do this right now, let’s just file a patent. But like software that lets your phone read your eyes and tells you what you’re you know,

Sunny Cannon 1:11:26
and if every patient’s room has an iPad now….

Kali Dayton 1:11:29
Yep. Well, there’s another special app. So I’ve been exploring a lot with Vidatalk. And they’ve created software. And I have special devices and boards for those scenarios, so that you don’t have these tiny little icons and try to navigate when you’re shaky and weak. And so…

Jeff Sweat 1:11:48
Oh, yeah, I couldn’t, I couldn’t, I couldn’t log into anything, when they first give me an iPad, my hands are shaking so much. And in fact, I was looking up the EyeWriter technology, because that actually met the founder of the company that does it. And and it took me two days to type in that URL. So

Kali Dayton 1:12:11
yeah, the creator of Vita talk him. He’s an anesthesiologist work in critical care as a tech for years. But he understands the real bedside application of it and these kinds of situations, because, I mean, how much sedation would you have been spared? If you could have communicated? I have a #communicatenotsedate.

Jeff Sweat 1:12:29
Right?

Kali Dayton 1:12:30
And how much of this sequila- how much of this whole domino effect would have been spared how they had we communicated? Before intubation? Yeah, and transparent with the risks and the options communicated with you, with you, after intubation worked you through talk to you through what the ventilator does where you’re at? And you could have been spared delirium. agitation.

Jeff Sweat 1:12:56
Yeah.

Kali Dayton 1:12:57
And then talk to Sonny the whole time that all that communication and maybe you wouldn’t have gotten so weak and shaky if you could have used your own cell phone the whole time? Yeah, they see in the COVID icu that they can walk in ICU people use their own cell phones because they don’t lose 50 pounds?

Jeff Sweat 1:13:11
Yeah, well, it’s true. And honestly, like, if I look at, at the things that I had to recover from post ICU, obvious, obviously, lung capacity is a huge issue and remains a big issue. And that was a huge deal. But the biggest issue for me was the muscle loss of muscle mass.

Kali Dayton 1:13:30
You had to learn how to walk again.

Jeff Sweat 1:13:32
Yeah. And I lost my balance because I hadn’t been able to, you know, move. And so I remember the very first time I like did like a real walk down the, in the halls of the rehab facility. I, you know, I looked into one of the open rooms thinking it might be my my bedroom, because we were coming back to my room. And just that act of turning, like made me totally lose my balance. I started tip over. And my therapist probably weighed like half as much as me and she grabs my belt and like and it was like I was like falling in slow motion, you know, towards towards the wall. Just gonna like timber.

I have 200 pounds. Yeah, no. So it’s like, so it was it was really learning all of these things again, and I’m a writer. So so the hand thing was really terrifying. You know, and but the but the really cool thing, I think what I was really happy about is that I was able to use my writing as occupational therapy to essentially become back so I had sunny bring in an ergonomic keyboard versus my laptop, which I would totally recommend if anyone’s trying to like, do this because what it does is it locks your fingers into place in a way that flat keyboard doesn’t. And I was able to type, and for quite a while typing was the only way I could communicate.

Kali Dayton 1:14:55
Wow, and how long did it take for you to be able to walk? So, from the time you came out of sedation realized he had a trach to the time that you were able to walk even if it was a stagger.

Sunny Cannon 1:15:09
That’s hard because that there was that weird like for four to five days of kind of semi sedation like he ……Yeah, from whence you are awake?Maybe four days till you took your first steps?

Jeff Sweat 1:15:22
No, there was no, I was longer. I was probably…

Sunny Cannon 1:15:26
Like fully awake, though.

Jeff Sweat 1:15:28
Oh, yeah, maybe five days, like you were it took a long time. It took a long time.

Kali Dayton 1:15:32
And granted, you were a mountain biker before, and in most patients, especially when they’re not in such good health before it can take weeks.

Jeff Sweat 1:15:39
Yeah. So I set the very first day that I was fully awake, I had all these plans. I was sort of like, I wanted to talk to Sonny twice on Zoom. I wanted to, like do these things. And the and they said, “We’re gonna bring PT in” and I was like, “Okay, I’m gonna, I’m gonna walk.” and like, I’m kind of a person who I will. You know, we always talk about like, we…. Sunny both talked about “winning PT”, whenever we do it, there’s like little people next to us. And we’re like, All right, we can do this. We can do better,

Sunny Cannon 1:16:09
You can walk faster than that guy!

Kali Dayton 1:16:11
What have you been allowed to use that personality trait? And that gumption?

Jeff Sweat 1:16:15
Yeah, absolutely. You

Kali Dayton 1:16:16
right away, right after intubation?

Jeff Sweat 1:16:17
I thought I was like, “I’m going to, I’m gonna go, I’m gonna go do this.” And the PT rolls me out of bed. And I don’t know if you remember these toys from when we were younger? There’s a little like, little like, kind of statues of I remember, like, Goofy, you know, and they had little rubber strings attached to them. And they would stand straight until you like the bottom and then they just collapse.

Kali Dayton 1:16:46
Yes,

Jeff Sweat 1:16:47
That’s what it was, like, I sat up. And I had no core strength left, my core was completely gone. No, any kind of strength. And I just collapsed. And because of that, you know, lungs, the lungs got crushed, and my diaphragm got crushed. I couldn’t breathe, my oxygen dropped. And I couldn’t.

It was all I could do to sit up in the edge of that. And I leaned back and you know, and I just remember being so discouraged. Because I just had nothing, nothing to sort of, I couldn’t control anything, you know, I couldn’t even sit up. And you know, and that was, you know, in retrospect, completely unnecessary. Yeah.

Kali Dayton 1:17:31
Yeah, likely not. I mean, it’s hard. It’s gonna cause problems with oxygen consumption, but I really feel like in general ventilator synchrony and lung function is improved when patients are not delirious, agitated, thrashing. So who knows how long you could have, if you would have maybe needed to be paralyzed for a brief period? Nonetheless, not the full three weeks?

Sunny Cannon 1:17:51
Yeah.

Kali Dayton 1:17:52
And the full three weeks of not moving a muscle in your diaphragm atrophy…

Sunny Cannon 1:17:55
and the starvation..

Kali Dayton 1:17:56
… and starvation. You talked about seeing your legs legs for the first time. So you, first of all, on the high flow for those few days, you had a feeding tube, but you weren’t being fed? Correct? And then you had your bowels weren’t working. So you took a couple of days off of being fed. In addition, we learned in previous episodes that a lot of COVID-19 patients go into a state of hypermetabolism. So you were immobile, hyper metabolic,, underfed. And so you lost a lot of weight. You said you lost 50 pounds, but how much it was that was fat versus lean muscle?

Jeff Sweat 1:18:31
It’s a great question. I actually did lose a lot of muscle and I was a cyclist, and so had really strong legs. And I woke up and I looked down and they looked from the top, more or less the same, like they just seem like they had shrunken and I didn’t shock shock me a lot. But then when I finally kind of had my legs out of the boots that keep you put you in to keep you from getting blood clots I a chance to look at my calves.

And it wasn’t just that they had shrunk. It was there was nothing there. No muscle and I had awesome calves like that’s a one thing. That’s the one thing in life that I’m proud of like everything else I got like Dad Bod and stuff like that, but legs are in good shape.

Sunny Cannon 1:19:19
sacks of skin.

Jeff Sweat 1:19:20
It was as if someone had sucked the muscle out with a straw. That’s what that’s what it looked like. That’s what it felt like. And you know, and that’s something that was such a part of my identity. It was really painful. I would say that was probably the thing that I struggled with the most was just that sort of like feeling like I just wasn’t the person that I had been when I went in.

Sunny Cannon 1:19:44
On the bonus side though you look 20 years younger. Whole face just…

Jeff Sweat 1:19:50
because I lost muscle but not fat I had so like baby fat I looked like it was when I came out of high school. So that was cool.

But you would have been willing to trade that for….

Oh, no, Yeah,

Kali Dayton 1:20:01
You know, when people are waking up in the ventilator, and they’re not, you know, good to go mountain biking the next day, it’s a process. But even just being able to, if you have one of these patients don’t stop getting out of bed. They don’t lose the ability to get out of bed. And, and you’re just as powerful demonstration of all these statistics that we read, as far as it acquired weakness, PTSD, I mean, Sunny clearly has PTSD, do you feel like you’ve been traumatized by your journey?

Jeff Sweat 1:20:27
I will just talk quickly. But, you know, I think there are certain triggers that I have things around like, my tracheostomy scar like that. Still, I can’t really look at it without it causing….. it adhered to my trachea so that when I….

Sunny Cannon 1:20:44
had to have a revision surgery last week, and he was terrified of getting put under again.

Jeff Sweat 1:20:49
yeah, so so have a lot of triggers around that.

Kali Dayton 1:20:53
Sedation was what terrified to most of all.

Jeff Sweat 1:20:55
yeah, they were like, do you want to be want to be fully under Do you want Twilight and I was like, “I want to be awake. Like, I don’t want that, you know, I don’t want to be under at all.” And they did talk me into at least like falling asleep. But like I sitting there in my hospital gown again. Looking at this, it was at the same Medical Center, looking down at the exact same pattern that I had been looking at for four weeks, and I just decided, “I can’t be here anymore.”

Kali Dayton 1:21:22
You weren’t sure if you’re going to wake up in a few weeks.

Jeff Sweat 1:21:24
Yeah, you know, at least like logically, I knew I would be okay. But tell that to the part of your brain that doesn’t listen to those kinds of things.

Kali Dayton 1:21:33
And I think with tracheostomy is anything ICU side, we get chicken pigs, and I’m out. We don’t know what it’s like to have that scar. Yeah. 25% of survivors from Turkey. ostomies has subglottic stenosis, I see you swallowing different? Yeah, even watching you over zoom, I can see.

Jeff Sweat 1:21:49
Yeah,

Kali Dayton 1:21:50
After the trachestomy, you’ve had have a revision- who knows what is down the road?

Jeff Sweat 1:21:54
Well, seeing the revision and the revision to take. Like, at least as far as I know.

Sunny Cannon 1:21:58
So far,

Jeff Sweat 1:21:59
It seems to be exactly the same as it was before, which is that I mean, the scar looks better. It doesn’t look like a belly button anymore. But like it still stuck, it still is attached to my to my trachea so that when you swallow the whole thing moves. And in the like of business world where I’m on Zoom 100% of the time, I have to wear button up shirts, just because I don’t want to look at it.

I’m sure no one else wants to look at it. So every single time I see my my scar to remind what happened. But that said, I got like, as I said before, I got lucky in the sense that like one advantage of being asleep during that whole time or out the whole time is that I didn’t have to deal with that. But Sonny unfortunately had to.

Kali Dayton 1:22:46
Yeah, I think you are fortunate a lot of survivors, that you go on any survivor page, you’re going to hear them talk about the kind of delusions that you had, but that were constant for those three weeks straight. Wow. So you are fortunate to have had a period of blackout. Even if you did come out delirious.

You just reinforced a lot of the statistics as far as increased time on the ventilator, increased rates of tracheostomy increased risk of readmission to the ICU, you got that. So when we’re in this period of crisis, we have overload of patients staffing crisis, we’re implementing these practices that keep people in those beds, using those equipment and the staff longer, it takes more staff to get a six foot five 200 pound guy that’s extremely weak and at a high risk of falling out of bed. It’s much less dangerous and takes less staff when we do it right away.

Sunny Cannon 1:23:37
It took I want to say five people to flip them every time they needed to prone him.

Kali Dayton 1:23:42
Yes, which we have, we’ve had patients turn themselves into prone. I mean, if you’ve not been sedated before that so weak or even sedate at the time, maybe you could have helped prolong your 6ft 5, 250 pound body. So I think your experience reinforces a lot of the theme of the podcast, that when we humanize the ICU and allow patients to stay human, the process is easier for everyone involved.

It’s more fulfilling for the staff to connect and get to know you as Jeff Sweat. For Sunny to have her rock still present throughout at all. And I’m so glad that you’ve made it out on the other side that you’re able to still be yourself. You know, you’re it sounds like you’re back to work and functioning, which is not often the case for survivors that have been sedated for that long. So congratulations. Thank you for sharing your experiences.

Please join our Facebook group so that you can continue to teach the ICU side about your side of the journey because that’s a sign that we hardly ever hear about. Anything else you would add to the discussion leave with the ICU community.

Jeff Sweat 1:24:45
No, I would just say I think it’s really good to be aware of what your options are, and

Sunny Cannon 1:24:51
and keep the family as much in the loop as possible. That the whole post ICU syndrome thing is very Real, but a nurse friend of ours pointed out that I likely had the post ICU syndrome family version. And I went, I looked it up. And there was a chart and I played post ICU family. Bingo. And I got bingo. Like, it’s like, yep, yep, yep, yep, yep, yep. Yep.

Jeff Sweat 1:25:19
Yeah. But I think, you know, you mentioned sort of all these things that people typically go through. It’s hard to say, with a straight face that I got lucky by the way that this happened, but the reality is I did, you know, like, it could have been so much worse. And I could still be dealing with these things. And or you couldn’t have to come home. Yeah, I could have been home, but but to be in a position right now, where I am where I have healed, I do feel incredibly fortunate.

Kali Dayton 1:25:47
And thank you for being an advocate for change. Hopefully, in a few years, we’ll look back at your experience and see it as a time I think at the past. Yes, that patients will and families will have more autonomy, involvement, choices and education, as far as their treatments and outcomes.

Jeff Sweat 1:26:06
And I think one of the main the main ways to get over trauma and grief is to find meaning. And that’s one thing we are hoping to do is to have people learn from this. Yeah, in fact, one thing I should probably mention before we close is like people always ask, like, what changed. And one thing that we we’ve decided to do is to write about this.

I’m a writer, but we didn’t know or certainly wasn’t willing to admit, until this all happened is that Sonny’s a pretty great writer too. And and when I got sick, somebody started maintaining these updates. And we kind of just set the all of our posts to public. And what started happening was everybody had been sharing these. And by the end, we had literally 1000s of people following this story.

Sunny Cannon 1:26:57
Worldwide,

Jeff Sweat 1:26:59
Which is how we ultimately got connected as someone who we didn’t know, following this, who decided to tell you about it. And it was amazing. It was sort of such a such an amazing outpouring of concern for all of this, and community or community. And that’s what you know, I think having sunny in my corner, knowing that she was there fighting for

Then having the world in my corner. Yeah.

That’s what made it possible for me to recover. I really do think so I feel like, you know, the, the metaphor I have is like, at any point throughout this, you know, I was a pretty even odds of survival. They could go when we got there. And I felt like having that support. Having feeling that love really, is what put kind of the finger on the scale the other direction. And if it weren’t for that, I don’t know that I’d be here.

Kali Dayton 1:27:55
No, family is medicine. And that’s the one of the main keys to survival.

Jeff Sweat 1:27:59
Yeah. And so what and we are actually writing a book about that, and hopefully, it won’t be out by the time people hear this. But by this time next year, hopefully there’ll be something there’ll be able to read about this story.

Kali Dayton 1:28:11
Okay, I will put the link to your website on the blog associated with this as well as any pictures and videos. You want to share your stories, stories moving and your family is beautiful. I’m so glad you guys are together again.

Jeff Sweat 1:28:22
Oh, thank you so much.

Sunny Cannon 1:28:23
Thank you.

Transcribed by https://otter.ai

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