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When an ICU team started discussing end-of-life with 31-year-old Megan Wakley’s family, they fought to have her transferred to the “Awake and Walking ICU”. When research shows that the less sedation used and the more mobility performed the less likely patients are to die, what did that mean for Megan Wakely?

 

Episode Transcription

Kali Dayton 0:27
Hey, team, I recently did a case study on the wonderful podcast critical care scenarios. If you’ve never heard of the podcast, go check it out. It may be a good idea to listen to the episode I just did with them prior to listening to this next episode.

Here we have Megan Wakeley. With us to share it with us her side of the story told them critical care scenarios. When I’ve posted pictures of Megan standing with her ET tube, chest tube, foley catheter, physical therapist and nurse smiling with a thumbs up people on social media have repeatedly asked, “So why isn’t she extubated?” Or things like, “Well, she’s young, our patients are actually sick.”

Little did they suspect that at the time the photo, Megan was on a peep of 18 and 100%. Telling Megan’s story to the ICU community, how she was treated her responses and outcomes is like telling people the world is flat. It defies all of our ingrained culture and logic. So I’m excited to have Megan tell you her side of her story and prove to the critical care world. What can and should be?

Megan, thank you so much for being willing to join us. I just feel like I’m reuniting with an old friend. We were just talking before we started the recording about just how hard and yet sweet some of our interactions were in the ICU. So this is pretty neat to be able to actually hear your voice and to see your face even though this is just an audio recording. Megan, will you introduce yourself to us and tell us a little about about yourself.

Megan Wakely 2:01
I am Megan Wakely. I have a beautiful daughter of the I love and love to spend time with and I’m was born here in Logan, Utah and live in Hyrum and I’ve been here my whole life

Kali Dayton 2:21
and what was like lifelike before you enter the ICU?

Megan Wakely 2:28
Oh, well, I could do a lot more physically. Obviously, swimming and camping fishing. Lots of active things. But it’s yeah, it’s changed a lot.

Kali Dayton 2:45
Yeah. And you’d gone through some really hard things too. If you don’t mind me bringing that up. Yeah. You’ve been through some trauma. And you have recently lost your mother.

Megan Wakely 2:58
Correct? Yeah, my husband died three years before that. And then my mom had passed away just a few months before I was in ICU, she passed away in December.

Kali Dayton 3:11
So you’ve been through all these hard things. And I’ve been through some some traumas and abuse, correct. And then in throughout those struggles that kind of led to this situation of being dependent on alcohol, and benzodiazepines. You’re on Xanax. Correct? And during this very valid depression, you probably weren’t eating very well. So you’d have baseline, alcoholism, benzodiazepine dependence and malnutrition. And you developed what’s called a ALPS or “ALPS”. It’s alcoholic leukopenia pneumococcal sepsis. So it sounds like you were pretty sick for about a week before you ever went to the hospital.

Megan Wakely 4:02
I was really sick I should. Now looking back on it. I should have went and I was just hacking for a good week and a half. And I don’t in my mind at the time I was thinking it’s just the cough every time you go to the doctor, all they say is buy some cough medicine and go home. Right. So i

Kali Dayton 4:31
Little did you know that you had this horrific necrotizing pneumonia that turned into cavitary pneumonia and this rampaging sepsis going on your body. And simultaneously, you went to alcohol withdrawal. And you went to an outside hospital and another city away from the waken walking ICU and you were admitted to the ICU and quickly put on a ventilator and you were deeply sedated because that’s But we aren’t we’re not we’re that’s what dicey community automatically does.

And so you continue to have these really big risk factors for ICU delirium, you had alcohol withdrawal. Granted, by the time you got to the hospital, you were probably towards the end of it. You had sepsis. And then you ever been given deep sedation? What do you remember about that time under sedation? What kind of experiences did you have while you were in a medically induced coma?

Megan Wakely 5:33
Like the hallucination or dreams that I, I had a lot, and to me, they were real. And in my head, I remember talking to people that were visiting me about it. And I don’t even know if that’s real, because I haven’t got, there’s so much information, like I learned something new with the app in there all the time. But the dreams I did have are hallucinations. It was I thought that one of the nurses had taken me home to her house to take care of me and I was in the house with her and her family. And they wouldn’t let me leave. And then the doctor was there. It was just bizarre. And then I thought there was a little kid in my room that was lost from their mom hiding.

Kali Dayton 6:33
Was it scary to you? Like, what did you feel during those hallucinations?

Megan Wakely 6:37
I thought it was completely happening to me, it was I was frustrated with people. Because I didn’t know, I don’t even know if when I went to talk to someone if that happened ever. Because I felt like it happened a little later to when I could actually talk or write. Uh huh. I’m not sure.

Kali Dayton 7:01
Because you spent probably a week being deeply sedated. And you just kept getting worse. And the team at the other hospital started talking about going to comfort care, they started talking about maybe withdrawing the ventilator tying your family to prepare for the end of your life. And your dad was not having that. And because you were 31 years old, and you have you had a toddler at home, and you had a long life ahead of you was the hope. So they had to transfer to the “Awake and Walking ICU”.

So by the time you rolled into our doors, you had spent a week in septic shock. In a medically induced coma, severe delirium, I think you’re at the end of alcohol withdrawal. And your ventilator settings were pretty high. So I go into this a lot and the interview that I did on critical care scenarios, but your ventilator settings, were probably obviously on the assist control peep of about 14 or 16, and 60 to 80%, when you were admitted to our ICU, and you were also still on some vasopressors, meaning you were still in shock. Your blood pressure was still pretty low.

Granted, that made them part from the sedation. So once we kind of got you all tucked in, the next thing we had to do was look back, step back and look at the big picture. So we knew that your lungs were really bad, you had pockets of infection. And your lung was basically being ravaged by the infection. And so and you….

Megan Wakely 8:35
Do you think it had anything to do with my ribs being fractured?

Kali Dayton 8:41
No, I think this this kind of infection is more to do with just the alcohol. Yeah, I’m not sure i don’t i don’t think i think this is most infectious. But your ribs have been fractured from abuse, right? Yeah. Did you when you were in the coma? Did those events, those situations ever come back to you?

Megan Wakely 9:05
No, not a all. Which…

Kali Dayton 9:09
That was a really big concern to us, because we knew as a really important part of your history, is that you had PTSD. And we were really worried about that being relived while you’re in the coma, because that a lot of survivors talk about that happening. And so that’s a huge risk factor for having post ICU PTSD.

You know, if you can imagine whatever you went through, going through that as vividly as thinking that you were being brought home to the nurse’s house and being held captive, right. So that was part of our discussion was that was just who’s got sick lungs. She’s got this massive infection throughout her body, but she also has to be protected. So as far as your brain and your physical capacity because you were malnourished at baseline, you were so tiny, I don’t remember how much did you weigh like 90 pounds, 80 pounds?

Megan Wakely 10:04
I think they said I gained weight with the feeding too. So

Kali Dayton 10:09
You were so small, and then you would atrophied just laying in bed, having septic shock at the outside facility. And so we were really worried that go ahead,

Megan Wakely 10:21
I just remember my bones like I could feel and see my bones laying in there. And I was like, it was so gross.

Kali Dayton 10:27
You were you were a skeleton in the bed of truly like you were very gaunt. And so that all played into our decision making to that moment, you know, we have a very sick young woman in our in our hospital room. But keeping you in a coma was not on our to do list because we wanted you to be able to walk. We were afraid that you wouldn’t be able to walk when we were to try, because you probably lost whatever little muscle you had at the time.

We knew that you had high risks of having post ICU, what we call dementia, we didn’t want you to lose more cognitive function, because that would really impact your life. We don’t want you to have worse PTSD. Because obviously, that’s what’s led to the substance abuse. And that was going to be a battle you would have to face the rest of your life. So we might as well do everything possible to prevent that from being worse, and having decreased cognitive capacity to fight that battle.

So here we are looking at you, and you’re so sick, but we we know that we have to wean back sedation so we do we gently wean it back. And you are just like our worst nightmare. I mean, just like we feared, right? We were so afraid of you coming out agitated and you were you were deeply delirious. You were thrashing you were trying to pull out your tube. You were so agitated, they even bit through your tube, which someone on such high ventilator settings, that’s scary. Because you can’t maintain that pressure when there’s a hole in your tube. So we had to switch out that tube. And as we did we gave you deep sedation again and had to recalibrate and decide again. “Okay, so what’s our plan?”

Megan Wakely 12:05
Someone got upset with me?

Kali Dayton 12:07
Which was Doctor?

Megan Wakely 12:09
I don’t know. I think there is a doctor that got upset with me.

Kali Dayton 12:13
I was probably yelling at you. Do you remember that? Do remember what that was like to be let out of your sedation and to be so agitated? What was that like for you?

Megan Wakely 12:23
I didn’t know what was going on. I just remember him saying this. This is your lifeline. This is like trying to let me know that I can’t keep ripping it out that this is keeping me alive. And I was like, What is God? What is he talking about? What is going on? What is?

Kali Dayton 12:41
Do you remember wanting that thing out?

Megan Wakely 12:45
Not Not until I became fully aware.

Kali Dayton 12:49
So you were so out of it. You couldn’t even relate to anything being in your throat?

Megan Wakely 12:54
No, it was probably just natural reaction. Yeah. yank it out.

Kali Dayton 12:59
Absolutely. And and it’s really hard. Like you were a lot of work. No, and don’t be sorry, I only say that, because that’s something that I think the listeners can relate to, is that when people are delirious, they are so much work. And you might have some yelling, like, Hey, we’re trying to reorient you like don’t pull that out.

You’re in the hospital, trying so desperately to bring you back to reality. Because when patients are in reality, which eventually came back to us, you so much easier to manage. But there’s a time there’s a period when it is just a bucking rodeo, and it’s so difficult and it’s dangerous. So biting through to pull it into that is dangerous, but it’s also dangerous to leave you deeply sedated.

It’s dangerous to let your muscles atrophy to the point of not being able to stand up. It’s dangerous to break your brain and cause a brain injury. So we had a really carefully decide risk versus benefits and which dangers we were okay with in the moment and how we were going to work through those. So we decided that you needed some kind of sedation for that moment, right?

So we put you on precedex. And I think at that hospital, I suspect that you were getting something like first set for sedation. And so you baseline had been set as a pain dependence. So we recognize that we need to give you something for benzodiazepine dependence, in case you were in withdrawal from Xanax. So we put you on Klonopin and precedex and I think probably fentanyl as well.

And but we titrated it around to a rise of zero. So we wanted our goal for you is for you to not be comatose, we didn’t want you to be so asleep that we couldn’t get you to sit up and participate in try to walk. But we want to do calm enough that you could do those things. And so that was our goal. That’s a we found some sedation, we played around with it a lot and you had a nurse her name was Shauna. She’s been there for 30 years. She’s one of my mentors, and she is so skillful and she just hung by your side

You remember her, I am glad you should remember her because she took care of you for weeks. But when you initially came in, it was so much work. And I just, I get emotional, I was so moved by how dedicated China was to keeping you safe, and not just keeping you keeping you in restraints. But she was really worried about what was going to happen not during her shift, what was going to happen in a week or two. Because throughout the following days, your lungs kept getting worse. And there’s talk about sending you to another facility for ECMO.

But at that facility, they don’t walk patients. And so when they were, they were wanting to transfer you before your lungs got worse, but it wasn’t, you weren’t necessarily destined for ECMO yet. So we were in this kind of gray area. And Shanice threw her hands on the desk during rounds, and also yelled, and she is a very patient, calm, composed person. But she said, “No way, you are sending her to that facility. Because if they, if you send her there, she will stay in bed and rot even more. And then if she ends up in ECMO, there’s nothing for them to work with. She’ll be so deconditioned.”

And so to prevent you from going into a facility to prove to the higher ups that you weren’t, quote, unquote, that sick, she was determined to get you out of bed. So right after rounds, she grabbed Angela, the physical therapist, and she’s like we’re getting your butt out of bed or getting her out.

Megan Wakely 16:26
Yeah, I remember Angela.

Kali Dayton 16:28
Yeah, she’s Angela saved your life. Let’s be honest, Angela and Shauna saved your life. Because in that moment, you could have just been shipped off to another facility. But these women grabbed your 80 pound body. And they put a gait belt on you and your family was there. And they lightened up the sedation.

I mean, you were already lightly sedated. And they tried to get you up. And you were so weak and so delirious that you could barely put one foot in front of the other, you could barely put weight on your legs, you were so weak. And I think it’s an ICU side, we get so scared because we don’t want people to fall. But they knew that if you didn’t walk then you weren’t going to walk in a few weeks. And so they almost carrying you. And then you started to take your own steps. Do you remember that moment? Or what was that like to be a walking zombie?

Megan Wakely 17:22
I don’t know if it was my first thought that I woke up in the middle of. But I remember waking up mid walk. And all of a sudden all you know the machines and people and everything’s in front of my face, and I’m standing there. I just remember my sister in law being there. And she kept telling me to look at her look at her look at her. So I did and she just kept telling me it’s okay. It’s okay. It’s okay. Just walk, just walk. And she’s so familiar. And I trusted her so I just Okay, so I did it.

Kali Dayton 18:12
What would that have been like if she wasn’t there?

Megan Wakely 18:16
Oh, I don’t, I don’t know. I don’t know. Every one being there really made a big difference, I think.

Kali Dayton 18:27
And I’ve repeatedly said in some different podcasts that our only tool quote unquote, is walking for delirium that we don’t have medication or specific treatments for delirium other than walking, but you remind me of such a strong point, family, walking and family are the only two tools there really are two tools that we have to combat delirium, as well as sleep hygiene and things like that. But you make a perfect example.

You woke up during walking, and I would invite everyone to go to the Instagram or Facebook page and look at Megan’s videos. I think the video that I have is probably your second or third walk. So it wasn’t even the big howling you like lifting you in the air kind of moment, but you still were a hot mess. And yet, during that walk, you would then you would stop and take a break and you’d start writing on the board. And what would it mean to you to write to us?

Megan Wakely 19:31
Yeah, did it make sense what I was writing because I don’t remember writing. Like,

Kali Dayton 19:37
I know I don’t think it made very much sense at first. And there’s I hope that the listeners have seen it. But there is a delirium handwriting. And it’s not just chicken scratch. It’s like a drunk chicken. Like it’s loopy and it’s disconnected and we try so hard to discern what it means but yet, at least your hand is holding a pencil And you know that you’re supposed to write and you’re trying to communicate something, it’s a step and as, but it really reflects what’s going on in your brain.

And it clear it clears out after a while, we start to be able to discern certain words or catch things and try to answer your questions, because I think what you initially start writing are questions like, “Where am I? Why am I here?”

Megan Wakely 20:20
I’ve gotten in a car wreck. I, I remember going to instacare and then saying they can give me a shot for my pneumonia. Or I can go up to the emergency room to have them look at it more. So they gave me the option, I could have had the option of just getting a shot and going home that day. That’s terrifying, which probably wouldn’t have been good. And I don’t remember going to the gym or I remember instacare. And I don’t remember anything after that. I don’t remember going into the emergency room.

Kali Dayton 20:58
Then you just had all these crazy hallucinations? Do you think you’re how that some nurses’ house and people are yelling at you, and then you think you’re in a car accident, and suddenly your sister in laws, they’re saying “walk!”?

Megan Wakely 21:09
Yeah.

Kali Dayton 21:11
And then you’re trying to write to us on a board. And I have pictured that as well. And, and as you sat in that wheelchair in the hallway, trying to write and I think the patient team was so patient, because we didn’t make sense. But it was important to you to try to communicate to us and we wanted to know where you were at. In that moment, Erica, one of our techs tried to brush out your hair, and your hair was just matted.

And I’m sure you weren’t really able to brush it before you went to the hospital, you were alcohol withdrawal, then you were spending a weekend in the coma. And you really can’t deeply wash someone’s hair, you can’t really brush someone’s hair when their backs on the on the bed. And so it was it was really, really mad it and this so the second you were in the chair, and Erica saw that she had access to your hair, she’s like, that’s, yep, I am gonna brush that out. She spent hours on it. Every time you walked every time and then after your walk, you would sit in a chair for a while or before your walk.

And then she would brush it out more. I mean, there are two texts that spent too so much time little by little working on your hair the next two days. And finally, after a few days, I saw I walked in one day it was braids. And I said By golly, they did it because it was so matted. But yet it was really important to them. For you to be able to feel like yourself. They knew that that would help bring you back to who you really are, and to be able to look forward to your future if your hair was brushed, which sounds so simple. But what did that mean to you to be able to take a shower to be able to have your hair and braids it those the little things, but does that mean to you during that period of in between in between worlds?

Megan Wakely 22:56
It was a lot because you just you feel kind of gross just laying there all day and all the side effects I had from the antibiotics and I just feel gross. And so to have that just feel fresh and clean. And I love it when they wanted when they’d come in and ask to do my hair. Or if you know if I wanted it braided or anything. I loved that.

Kali Dayton 23:28
That was while you’re on the ventilator. You were on the ventilator almost the whole time that I see you. And you were you remember them doing your hair. And you were given the choice the option?

Megan Wakely 23:40
I remember most of this day, I think I think it was just the first bit I don’t remember.

Kali Dayton 23:47
And so what do you remember after that? So you kind of come to while you’re walking, which is got to be so weird. You’re suddenly walking on the ventilator?

Megan Wakely 23:54
Weird and then I think I kind of blacked out again after that. Yep.

Kali Dayton 23:59
Because you fell asleep. After those walks as a few walks, we were able to take the sedation down each time we decrease it by by more, because you were so tired, and you were coming out of delirium that you didn’t need so much sedation. So we continue to the ABCDEF protocol, meaning we kept trying to sneak it back and reassess every time not just her her settings.

This is where she’s going to be for next week. But we want to do to keep Eros of zero by yourself. So if you were asleep, getting real sleep, we don’t want precedents to throw off your sleep. So we start to wind it back. And if you need more later, that’s fine. But you eventually after like a day or two of walking. You didn’t need anything besides the normal like Klonopin, and maybe some fentanyl because you were having some test tubes for the cavitary pneumonia.

Megan Wakely 24:46
Oh yeah, those are not fun.

Kali Dayton 24:48
No, it was so painful and you were able to tell us about your pain. What did that mean to you to be able to say? Because you told me about your anxiety. Tell me about your pain, what it mean to you to be able to tell me Yeah, what you were experiencing and what you needed.

Megan Wakely 25:04
I was glad I could communicate. But honestly, with that, too, I get so frustrated, just wanting to get out how I’m feeling or what I need or

Kali Dayton 25:19
because you couldn’t talk, right? Yeah,

Megan Wakely 25:21
yeah, it was totally new communication, which I’m glad I could do.

Kali Dayton 25:27
It’s a learning curve. And it’s a different language, you know, trying to read lips and trying to write it down. And it’s a test of patience for everybody. Absolutely. But you wrote a lot. I have pictures of you writing to your sister in law, and you had your dog in the bed? What did it mean to you to be able to write to them to connect with them? And how do you be able to know that your dog was there?

Megan Wakely 25:49
That was everything. The first week, my friend was there. I guess I don’t remember her being there at all. No memory that. But I do remember my sister in law being there. And bringing my dog up. And I don’t know how it would have turned out without them there. But it was…..

Kali Dayton 26:12
When people say, and they say this all the time, in the ICU world, “No, if I was on a ventilator, I would want to be snowed out.” Meaning, “I want to be deeply, deeply, deeply sedated. I don’t want to move a muscle. If I’m on a ventilator.” Now that you’ve had it both ways, what would you say to them?

Megan Wakely 26:32
I mean, if you get knocked down, and you’re not coherent, there’s no progress. And it’s not fun to be on the ventilator. It’s not enjoyable to have a tube down your throat, but the progress that I made. And even with that progress, when I went to the rehab place, I fell down in the bathroom. And I didn’t think much of it. I was just, I like kind of tipped over getting undressed. And I wanted to pull myself up. There is no way no way that I could do it. Not even lift myself a little bit. And so I can’t imagine being laid out not moving at all.

Kali Dayton 27:20
Yeah, I mean, we caught you in time to prevent you becoming so weak that you couldn’t lift a finger. Yet, we’ve interviewed other survivors where they they talk about just the exhaustion of trying to reach the remote to push the on button, or to turn the TV off. But they just she just tried to will her finger to push the button and could not do it. How frustrating would that be?

I mean, it’s already frustrating if you lost a lot of strength. And it took a while for you to really be able to walk well, even once your brain got better. You still you were so weak that that you required some some systems and support. And I kept telling you, I want you to know that if you do this, you will walk out of here. So what does that mean to you to have that vision of walking out of the ICU?

Megan Wakely 28:16
Hope. A goal. Definitely a goal. And the motivation to get up and walk because there was days. I just didn’t want to walk but they were adamant that I had to and so there were days that I wanted to or times that I was excited to get out and go and there were times it was I just felt exhausted. But I did it.

Kali Dayton 28:48
When you did it, what impact did that have on your anxiety? Because you were having real anxiety.

Megan Wakely 28:54
Yeah, yeah. Oh.

Kali Dayton 28:58
It was awful.

Megan Wakely 29:00
Yeah. I was worried about my daughter, my home my pets like.

Kali Dayton 29:06
So when you would walk, how did you feel after compared to before?

Megan Wakely 29:10
Better, more relaxed. I knew I’d feel better after it was just the because there were times that I felt like I couldn’t get any air. And all the nurses everyone would check my oxygen and show me you know, you’re getting plenty of air but it just felt like I can breathe.

Kali Dayton 29:35
Did you feel like you were able to breathe better when you were in a chair and or walking?

Megan Wakely 29:45
Yeah, it was fine walking. It wasn’t the walking that made it bad. It was air because I remember sitting in their room when they were turning down my ventilator. That’s when it started to get harder as turning it down.

Kali Dayton 30:01
Yeah, I mean, your lungs were so stiff and also so necrotic. I mean, they were talking possible lobectomy, because your lungs were so so just necrotic. I mean, they did so much of your lung had died. But

Megan Wakely 30:15
what is that?

Kali Dayton 30:16
When they take out part of your lung?

Megan Wakely 30:19
Do I still have functioning on both sides?

Kali Dayton 30:23
I don’t, I don’t remember I haven’t, I don’t remember the last CTS that I saw of your lungs, other than they were just really impressive. I don’t remember, I think one side was worse than the other, according my memory, and your entire sentence got worse. So you ended up meeting like the people of 18, and like 80%, even up to 100%. And you kept walking and you’re walking up better, even though you were requiring more support from the ventilator.

And so we didn’t want you to have to sit up sit on that much support at that high of pressure on the ventilator. So we tried to pro knew we tried to lay you on your stomach twice. And you always breathe better, he always got more oxygen when you were walking versus prone. So otherwise, we wouldn’t have known what would help with I just it was repeatedly said that anywhere else you would have died by then your your infection would have been worse, you’re you definitely would have been able to breathe on your own by the end of it. Because your lungs were so stiff.

And you were one you’re one of the very few people I’ve ever seen have a tracheostomy. But we just knew I mean, you could you were able to be on CPAP during the day, at the very end. But at night, you still needed to have support to be able to really relax and rest because it was so much work to breathe. And so that’s what you’re talking about feeling.

Megan Wakely 31:42
Yeah, tt was crazy. feeling exhausted, just breathing.

Kali Dayton 31:49
But when you have such stiff and sick lungs, and then we can muscles, it just even that natural breathing is not so natural anymore. No, it’s not. And so you got a tracheostomy. But you were able to be off during the day, totally disconnected, which I thought was extremely impressive, given how bad your your lungs had been.

But it just showed me that because you were walking you were strong enough to do that work that it took to breathe. And COVID was about to come. And I was we as a team were desperate to get you out because the last thing you needed was COVID. Right?

Megan Wakely 32:26
So you guys wanted to get me out of there because….

Kali Dayton 32:29
You transferred out like an hour before the first COVID patient came in. It was a miracle and..

Megan Wakely 32:40
Could there be a worse time to have an issue?

Kali Dayton 32:44
Yeah, we and LTACHs were about to shut down. Right. So we got you out just in time. So you probably left a little bit earlier than most patients would. So you did go to an attack, which is very, very rare 98% of survivors from the Awake and Walking ICU discharge straight home. But you did not have a normal course you did not have normal ARDS even so you were going to LTACH, you were on a trach. But you didn’t have to be on the ventilator during the day.

And when they came to pick you up. They passed by the office, np office, and with a stretcher, and I suddenly realized it was for you and I ran after them. I said I stuck with them. And I said, “You are not depriving her of her glory. She has worked so hard. You park that stretcher out out the in the hallway, if you must. But my Megan is going to walk herself out of the ICU because that’s what I promise you’re able to do if she worked as hard as she has.” And so what did it feel like to walk out of the ICU- to walk away from weeks of being on death’s door?

Megan Wakely 33:54
It crazy. It was uh I don’t know it was I was happy. I was nervous about where I was going. But I was I felt like I must have done something right and something good because you were getting out of there clapping and stuff.

Kali Dayton 34:22
It was a huge celebration. You know, it’s always a celebration, my patient leaves ICU and they leave the hospital. And I see a lot of videos, you know, the COVID survivors and they’re they’re wheeling out in their beds. And I wanted even more for you. And that’s what you got. You walked yourself out. You were breathing on your own. You’re off of ventilator you did have a trach but you were going to attack but that was brief. You stayed in LTACH for how long?

Megan Wakely 34:47
I think three weeks to a month. But you were walking the whole time when I left there. I remember they gave me so much information. I don’t remember that’s why I’m learning new stuff about this sepsis. That explains a lot I, because I was given so much information and

Kali Dayton 35:09
and you still were not yourself.

Megan Wakely 35:12
Yeah. And walking out of there, I remember trying to walk through my stepdads truck. And it wasn’t too far away from the doors. And I remember I was kind of getting tired and lightheaded a little. And I was thinking, Oh, my goodness, am I? Am I ready for this? I shouldn’t maybe I should just go.

Kali Dayton 35:32
Yeah, it’s, it’s a must be so vulnerable to have been that sick and that deconditioned.

Megan Wakely 35:42
anymore. And, yeah,

Kali Dayton 35:45
It’s a big deal. And I think if, from the ICU side, if we realized how big that moment is to go home,

Megan Wakely 35:52
it’s exciting. Super exciting.

Kali Dayton 35:55
Good. And it should be because you worked so hard. I mean, we spent almost like, what, two months in a hospital setting. But if we saw the moment of you go into your dad’s truck, we could visualize that moment, from the moment you roll into the ICU, I really feel like that would change how we took care of patients like you. If we saw your risk factors, you know, if we saw PTSD, as big of a risk factor as a kidney injury, or chronic kidney disease, we would change the medications we gave accordingly.

And that’s what your team did for you. They saw you as a mom with a very young girl, and you need to be able to be physically, but also emotionally and psychologically capable of caring for her. But nonetheless, you did have delirium. You had it for a little over a week. And that has really impacted you can you share with us what, what deficits are what impacts your life now, after having delirium.

Megan Wakely 37:04
I feel like I could have came out a lot worse reading other things, but the memory and your whole brain just doesn’t process things the same. I feel like it kind of changes, it takes more time or effort, I guess to process everything. And I’m grateful for what I do have.

Kali Dayton 37:47
And when we reconnected because I’ve given you my my information, because I was hoping that you’d be willing to share your story. I connected you to some of these survivor groups on Facebook. What does it meant to you to see other people’s journeys? And I’m sure you were actually much sicker than a lot of the people that you’re hearing from. So how would you compare the deficits you face now to some of these other survivors?

Megan Wakely 38:13
I’m so glad you gave me that resource. Because reading those, even if I don’t comment on them, I’m reading them a lot. And it, it just makes you feel better. Other people somewhat understand and you can kind of see what they went through and be a support for them as well.

Kali Dayton 38:41
Yeah, I don’t think I can remember how I stumbled on to survivor groups other than I was just curious about what life was like after but I’m sure it’s not standard protocol to set survivors up with other survivors. But you’re saying that it’s so helpful. And so why wouldn’t we just say, Hey, you had delirium or Hey, you are in the ICU obviously, here is the option of going to a support group or connect with people online. This will help you on your path to recovery.

Megan Wakely 39:11
Yeah, I feel like I just didn’t have a lot of information I feel like when I got out of the hospital, I wasn’t really sure. What I had what you’d call it, I guess is because my memory I was given so much information at once that just went over my head and what I knew my lungs. I knew that I knew that they were not great. And guard. I didn’t know exactly what you’d call what I had.

Kali Dayton 39:47
Yeah, you and I talked about the sepsis and the delirium and I think I see a lot of survivors and what that what happened. Why did I have these scary dreams and hallucinations and why do they come back to me now? on why can’t I think normally? You probably see all the time. Everyone’s asking, “why?”

And and I think a lot of it’s because there is not common understanding of what’s gone on. Do you feel like you’ve been supported with your mental health? Since leaving the ICU? That was one of our priorities. We wanted to set you up with mental health resources to be able to continue to combat your substance dependence and your PTSD and things that had been difficult obstacles even before the ICU? Do you feel adequately supported in that?

Megan Wakely 40:28
I don’t see a therapist or anything I don’t. I never have that’s kind of my own. Not wanting to I guess are not sure about it.

Kali Dayton 40:48
But that was offered to you before you left, correct.

Megan Wakely 40:50
I don’t remember.

Kali Dayton 40:55
We had set it up before. No, it’s okay. No, no worries, we just before

Megan Wakely 41:00
Someone came in and did like a therapy session with me in the ICU, right?

Kali Dayton 41:06
Uh huh.

Megan Wakely 41:07
I remember that.

Kali Dayton 41:09
Yeah, we didn’t have like, come see you. Because you were going to face so much. And we wanted to get you started on being supported. And I would love to see that change more that we that we involved that because we send patients out with outpatient support for pulmonology for nephrology for, you know, any thing that needs to be followed up on with the body.

We have specialists that we send people to but when the mind has been so broken and so damaged and traumatized. We don’t even tell people that they might have these problems later, let alone provide support. So what would you share with the ICU community to help us understand what a survivor needs after having delirium?

Megan Wakely 41:53
I definitely the mental health support. And honestly, things being written down and given to you much better because there’s so just so much information. And I guess I left both places, I left the ICU, and then I left their rehab center. So I don’t know the all the information got transferred over to when I finally left there.

Kali Dayton 42:26
Yeah, and I think I tried to give discharge instructions, I think it’s really important to have the family or whatever support system present as well. And I tried to form the families, while the patients had delirium, hey, this, this isn’t just this week, this is going to be a lifelong thing, potentially. And here’s and just repeat it to the families prepared to support you. But you can’t really get that instruction to someone that’s still recovering from a brain injury, essentially. Yeah.

Megan Wakely 42:57
Because I, I remember some of the information but and then when my hair started falling out because of the septic shock. And during the summer, I had my hands and feet swell up for like huge, and I didn’t know I wasn’t really sure what was going on. And and then my hair just kept going and going.

Kali Dayton 43:28
And now it’s come back curly. You know, it’s if you’ve gone through chemotherapy, it came back curly, and it’s so cute. But I don’t think I definitely don’t think I thought about telling your family about post sepsis syndrome. And so I think that’s an important resource to include as well. Yeah. That there is a life after the ICU. And

Megan Wakely 43:51
it’s not a huge deal. In that moment. You’re so you’re just happy to be out of the hospital and get everything health wise going good. It’s just not I get the it’s not like a priority. Your hair might fall, you might insignificant until you’re at home two months later and all of a sudden,

Kali Dayton 44:17
But if on ICU side, if we were to provide you with a handout that said, You’ve had sepsis, go to this website, because you will likely suffer from Post ICU post ICU syndrome and or post sepsis syndrome. Then when you’re in your right mind, or your family’s things are more calm down, you can go to that resource and go to that support group and have those resources. Because yeah, it’s hard to explain everything in moment.

But even just to say, this is what you’ve had, and this is what this may mean later on. Someone has a kidney injury, you know if they’re, they leave on dialysis. We have discussions about what that looks like, for their lives. And if we expect that to be a lifelong thing, those kinds of discussions but we should also provide that for all other kinds of ICU ICU conditions as well. Yeah. I think primary care also should be aware of that. So your primary care doctors are that How aware are they of your post sepsis and post ICU conditions?

Megan Wakely 45:20
Not very much, probably from I actually told him that I talked to you last time I had a virtual appointment. And I don’t think he knew about it at all before. I’m not sure.

Kali Dayton 45:43
That’s what a lot of survivors are reporting that they bring these symptoms to their primary care doctors, because that’s the only person available to continue their care after the ICU. And they have no idea what’s going on. Yeah, and they feel so low. And it’s not till they talk to other other survivors that they feel validated. So I think you’re you may get example of how there needs to be more communication between the two sides of the healthcare, and that we need to give people warnings and give people support for follow up. And so I don’t know exactly what that looks like in the future. But I think your voice is going to help inspire that change and that awareness.

Megan Wakely 46:20
Yeah, I think that’d be amazing. That was a primary care doctor should just, that should be a given. I feel like because when I even when I got home, he was trying to get me to drop down my oxygen to totally wean off of it. And trying to tell me to take it off at times and, and,

Kali Dayton 46:42
and you’re just like, “No, this is going to be a long term thing.”

Megan Wakely 46:46
I would try it because I thought like, everyone told me that I was close to dying, and I didn’t sweat. Everyone tells me I’m gonna be on oxygen forever. So that, you know, I was try it. And after a few weeks, I think he realized that this is how it’s gonna be so.

Kali Dayton 47:17
Yeah, I mean, you have such a unique situation. But yeah, there’s better communication between the ICU side of the ICU, one of our doctors, or one of us could call your primary care physician and say, here’s what her course really was like. I mean, I would hope that they would have access to your documents and the discharge summary from your ICU stay, but maybe not.

So how can they know they think that you just are recovering from a bad pneumonia? Yeah, yeah, I know, there’s a lots of lots of gaps in their system. So in the end, we have to treat patients like they’re going to have a life after the ICU, we’re fighting for them to survive, but then we don’t fight for them to have a life after the ICU. But I feel like your team, even while you’re on a PEEP of 18 and 100%, they still fought for you to be able to go home and be a functional mother for your daughter and enjoy your life.

And I’m so glad that you’re back. You look so different. You look well nervous, you have your oxygen, but you sound good. It’s nice to hear your voice and see your curly hair. And I am so proud of you and for you fighting to continue to thrive after all you’ve been through and you were absolutely worth the fight. And I really feel like if you hadn’t been awakened walking ICU, you’re the rest of your life would have maybe not had been existent, but definitely would have been far different.

Megan Wakely 48:43
I feel that for sure. I know. That getting up and walking and being that’s the only way it could have got better laying in bed and how how is anything gonna get better? Nothing.

Kali Dayton 49:03
Right. Right. That’s what I keep saying Megan is what I keep saying just you say like, it’s so simple, but it’s not seen as that simple. From the ICU side. But you having necrotic cavitary pneumonia, and septic shock and alcohol withdrawal and benzodiazepines withdrawal. You are making it you’re saying that simply you’re saying “thank you for getting my butt out of bed.”And that is powerful to hear that from a survivor.

Some that’s been their experience that you are on death’s door for weeks, and yet you walked through it. And I think you are going to be a force for good. So thank you so much for being willing to share your story with us to be so vulnerable and honest with us. And I’m so proud of you and I hope that your legacy impacts many patients to come that more patients will be able to provide or receive the kind of care that you did and have providers be As determined to help patients thrive and not just survive. So thank you.

Megan Wakely 50:07
It’s made all the difference. And I didn’t love it there, but I love the nurses and doctors I really liked everyone knows.

Kali Dayton 50:17
And I don’t think anyone really likes their delirium either. So I’m like, “I’m sorry, you’re seeing my face. I’m sorry, we’re in this situation, but I am going to distrust that this side of reality is going to be better than delirium. And this way, you have a chance to have a life outside the ICU.” So keep supporting us as an ICU community and as well as survivors. We need you you’re worth the fight, man. Keep up the good work.

Transcribed by https://otter.ai

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