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Critical illness impacts not only the patient in the bed but also their entire family during and after the ICU. Eli and Cathy Garrison join us to share their young family’s course of twists and turns of an amniotic fluid embolism to long-term disability.

Episode Transcription

[00:00:00] This is the Walking Home From the ICU podcast. I’m Kali Dayton, a nurse practitioner and ICU consultant. I help teams create awake and walking ICUs through evidence-based sedation and mobility practices. By hearing from survivors, clinicians, and researchers, we’ll explore how to give ICU patients the best chance to walk out of the ICU and go home to survive and thrive.

Welcome to the ICU revolution.

Okay, I know episode production has slowed down, but this is really because the ICU revolution has been ramping up so quickly. I hope you are feeling the winds of change, but I can attest that the climate is shifting, and there is a [00:01:00] growing awareness and hunger to learn. I had so much fun visiting the revolutionists and leadership at Regence Hospital to discuss the financial benefits of the ABCDEF bundle in Minneapolis, and then had the best day running an awakened walking ICU symposium for Allina Health with revolutionists from their region and system.

There are so many exciting developments coming for this podcast, a new case series with a secret star, upcoming summits, online courses, even more teams being trained and transforming. So hang in there and stay tuned. This episode is longer than usual, but so worth the investment of time. I am excited to have my dear friends share their family’s journey in and after the ICU to help keep us grounded in why we are here fighting for these changes.

Eli and Kathy, thank you so much for coming on the podcast. Can you introduce yourselves to us? I’m Kathy Garrett. This is my husband, Eli. A [00:02:00] little bit about us, we’ve been married almost 10 years. We have two little girls who are now eight and six. We live in Florida. We love it here. I’m not sure what else you want to know, but that’s us.

Well, I met you guys at the SECMOO conference. I had such a good time presenting with you, Kathy. We participated on a panel together, almost like an interview, right? Talking about the survivor perspective and your journey through ECMO, and I’m so excited to have Eli with us to share his side of it as well.

We’ve had a few family members on the podcast, but there’s just so much that we need to understand for the family perspective. And for anyone that might see this video, I mean, you guys look so healthy and young, so it’s hard to imagine- Mm-hmm … the journey that you’ve been through. Yeah. And so let’s dive into the unseen things, right?

The past and how that’s imp- impact the present. Can I first say that this is the first time Eli’s ever shared [00:03:00] my story on a podcast, and I have my own podcast. He won’t be on my podcast, Kali, but he’s on yours. So- Which I feel so honored. You know, that we’ve interviewed a number of families and survivors, but I don’t want us ever to take for granted how vulnerable it is to share these stories.

Yeah. Yeah. And it’s like, let’s crack open some of the most traumatic, difficult, life-altering events we’ve ever been through, and let other people in on that. So- I feel very honored, and I had such special experiences with you guys. At that conference, we, I had my daughter with me, and you guys took us around to Disney, and it was so fun to hang out with your family, and you guys are such a special couple.

Aw. You’ve been through amazing things, and I just kept thinking, man, story and who you guys are will really help us refine our perspective of families and what we do in [00:04:00] the ICU. Sure. From Eli’s perspective, we talked about it, and, like, it’s more about just the audience. And, I mean, he really wants clinicians to know what it was like entering the hospital to have a baby and then walk out with a disabled wife, a newborn, and a two-year-old.

I’m willing to do it because it’s- For clinicians versus, like, laypeople. Nothing against laypeople. They’re important, too, but it just is a different audience, and so it’s such a different perspective. And so h- honestly, I’m really proud of him for stepping up to the plate and being willing, ’cause it’s, like you just said, it’s not easy.

And being on, quote-unquote, this side of the mic, not being the interviewer, it’s definitely, like my, my palms are sweaty now. You know, it’s definitely, it really is w- being vulnerable in that space. So my ICU stay was due to an amniotic fluid embolism. Kali mentioned I was on ECMO, so pretty high-level need of care.

We were told that’s pretty much [00:05:00] the Hail Mary of care, like last-ditch effort to try and get things turned around. The punch list of my story is I was in a coma for nine days, endured seven surgeries, one of them being ECMO, one of them being a hysterectomy. What else? I suffered a stroke. Pretty significant a- what I know now to be probably ICU delirium and post-intensive care syndrome, and over six years later, I’m still in rehab, trying to get as much of my life back as possible.

It’s been a very, very, very long road and exhausting and tiring. But with the Lord’s help, we’re able to do so much more than we think we can. And from my perspective, I literally remember nothing. My daughter’s, my older daughter’s birthday’s late August, and that’s my last memory up until September 28th, which is the day I woke up from my [00:06:00] coma.

So it’s a full month that I do not remember, and even Eli, poor Eli, his birthday is squished in there, so I don’t remember his birthday from that year. And so it’s a very wild experience to not have a month of your life, especially when you’re so young. And I still struggle, I think from a multitude of things, I still struggle with short-term memory loss.

Just this morning someone was like, “Oh, we already went through my, like, perinatal trauma story,” and I was like, “Oh, sorry. I didn’t remember.” And I hope, you know, they weren’t offended by that, but that’s just our life. You know, it’s just- Like, while you were interviewing them? No, it was… We were transpo- responding on Instagram.

So it wasn’t in the interview, it was… I was just asking like, “Oh, could you tell me more about your story?” And she was like, “Oh, we already went through that.” And I was like, “Oh. Well, I’m sorry.” But it’s common. I mean, Eli might have a different opinion, ’cause he probably remembers it more than I do, but I ask [00:07:00] like the same questions over and over, and thankfully he’s incredibly patient.

I think even the kids are now starting to pick up, ’cause they’re getting a little bit older. I think they’re even starting to pick up. Like, they’ll say like, “Oh, Mommy, we already talked about that,” or things like that. Like, seeing me sitting here talking now, you’d never know what we’ve been through and you’d never know, like, the things that I struggle with.

So I’ll let you pick it up from there. There’s definitely been improvements- Yeah … but, I mean, it’s definitely far from where it was before we started. Just to give you a little perspective, I was a stay-at-home mom when I had my da- second daughter, and even before that I was a nanny. So like… And when I was a nanny, I had a part-time job at the same time.

So, you know, was probably working 50 if not 60 hours a week. So very, like, full functioning. I’ve always been super athletic. I’m a horseback rider. At the time I practiced yoga. So such a vast difference, and I’ve gotten a [00:08:00] lot of things… Like now I still horseback ride. It’s not the same. I do therapeutic horseback riding, and I’ve since go- since I’ve gotten sick I’ve not been able to canter a horse.

But growing up I would spend my summers riding three to four hours a day, and then go and do barn chores. You know, like, that was my day, like three to four hours of riding, and then the rest of the day, up to eight, maybe nine hours, was doing barn chores. So very active, very full functional. And then to come out of the hospital, and it even took six months, six full months to, for me to fully understand how sick I was.

And we always think, oh, they’re in a medically induced coma, they’re sedated, they won’t know what’s going on, they won’t feel or hear anything. Mm-hmm. That’s usually the end goal. They won’t remember anything that’s happened. For many survivors, that’s not the case, right? They still s- feel things, they hear things, they [00:09:00] remember hallucinations and things like that.

So that’s one scenario, but then we think the best case scenario is that you don’t remember anything. But how did it impact you psychologically to lose that month of your life still? Yeah. Was not remembering anything as good as we hope it is? That’s such a good question. I mean, I don’t remember the last month of my last pregnancy, and I probably will never get that back So that’s probably the hardest aspect.

And like I said, I don’t remember Eli’s birthday. I did remember a year later we went to the same restaurant, and I walked into the restaurant and was like, “We were here last year, weren’t we?” Like, I had that feeling like I knew I was there, but I couldn’t remember- Yeah … if that makes sense. It’s multifaceted.

It’s definitely a blessing that I don’t have the altered reality or the night terrors or the very visceral, just horrific [00:10:00] experiences that some people have described on your podcast. That’s definitely a blessing. It’s definitely my brain trying to protect me. Also, the pain, I mean, I had to have open heart surgery, so I can imagine the pain.

I mean, the pain even post-ICU has been pretty intense. So th- the pain of, like, having my chest open and some, even somewhat remembering feeling that, I can only imagine what that is like. I mean, I struggle to say it’s a blessing ’cause like I said, I don’t remember Chloe Anne’s pregnancy. And when you woke up, you didn’t even remember that you were pregnant.

Correct. Yeah. And so all of these people are talking to me about this baby, and I’m lying in the bed. I’m still intubated, so I can’t ask questions. They’ve not given me a communication board. My hands are too fat to type on an iPad. Uh, I can’t remember my phone code. I know very little sign language, and now I’ve, [00:11:00] like, learned more ’cause I’m like, God forbid that ever happens again, like, I’m gonna know at least, like, 10 signs that medical staff can at least help me.

Because something as simple as, like, once a friend came to visit and I had hair in my eye, and I couldn’t communicate with them that I had hair in my eye, and so I’m trying to wink at them and trying to, like… I don’t even remember, like, thinking like, “This is annoying. I need to get it out.” I just remember it hurting.

And so I remember her moving it, but she noticed I was winking at her, but it was ’cause I had hair in my eye. But it’s pretty wild to not remember so much of your life and always wanted to be a stay-at-home mom. When I decided I wanted to have kids, I knew that’s what I wanted. Thankfully, Eli was on board.

And so I don’t remember the last month that I was a stay-at-home mom. You know? So there’s so many moments of grief And at the same [00:12:00] time, I struggle to call it a blessing, I do, because there’s a lot of mo- moments of grief. I also know, because it’s an and situation, I also know it was my brain trying to protect me, and I think that that is a good thing.

Yeah. And Eli, you go into the hospital for the birth of your second child. So excited, everything’s great. You’ve got a young, healthy wife, normal pregnancy. Get this baby out, and then boom, everything changes. Yeah, that was scary. Definitely unexpected. I don’t think I fully thought through everything that was happening in the moment as I was jumping from emergency to the next emergency and next, “This is the next thing I need to do.”

When it first happened, I remember them removing me from the room and not wanting to leave, because I, in my mind I knew if I got too far away from the room, I was gonna be placed in a waiting room and h- have no information or knowledge of anything going on. [00:13:00] And is this while they were resuscitating her, they were doing CPR?

Yeah, they were doing CPR. So I remember I left the room with them and got just far enough away from the room where I was outside of the action taking place, so I knew I wasn’t really gonna be in their way, and I just sat on a bench And they tried to coax me to get in the waiting room, and I was like, “No, I’m just gonna stay here.”

And- Because at least I could look down the hall and see, you know, still taking place. In my mind, I was like, “Okay, at least I know they’re working on her.” He could see. You know, he’s like, “It was a surreal experience to see, like, 30 to 40 people lined up,” and it was kind of like, “All right. You’re out, you’re in.

Like, we need you now, we no longer need you,” kind of situation. But then also, he got to hear Chloe Anne’s first cries, and then at the same time, he got to meet her on the way to the NICU. You know, and had he gone to the waiting room, that wouldn’t have happened. Yeah. He would’ve just been left wondering.

And- See, I knew if Chloe came out of that room, I could at least see the door, and [00:14:00] I knew that she was leaving the room. Yeah. Or if Kathy was leaving the room. And I just think, like, medical professionals, I understand their highest priorities, as it should be, is to save that life. In our situation, it was two lives, and that should be the highest priority, but there’s still a person or multiple…

Like, my doula was in the room as well. So there’s multiple people waiting, wondering, who care about me and Chloe, wondering what’s going on, and giving… When so much of your autonomy is taken away, like Eli could not cut the cord, he couldn’t see her be born. You know, all of these things were taken from him.

I think it’s important to try and give any peace, even if that’s hearing her cries. Like, that is so valuable, and it’s priceless. Like, again, it’s a situation like had that not happened, he would’ve only heard Claire’s cries. And the [00:15:00] labor and delivery floor, fortunately, it’s not common to have codes running, CPR happening like in an ICU.

And there’s a lot of discussion, even research, in the ICU and ER, where these codes happen, in terms of keeping families there, allowing families to, to witness it, be involved in it. Used to be a very old mentality to rush the family out, get them out of the way. But that can increase trauma. If they don’t get to see what’s happened, they don’t understand what went into resuscitating that person.

If it doesn’t end up well They don’t know if it was called too soon. You know, they don’t have any kind of involvement or say in those final and pivotal moments. Mm-hmm. Not, not every, every family member does well. So what would you recommend to an IC or ER that really tries to get families out of the situation and separate them, and then circle back later, versus those that allow them to be involved or even witness it if they want to?[00:16:00] 

So I would say try to have a staff member assigned to that person, because I know in a code there are many jobs, and everyone has their role and their tasks. So having someone’s task be the, the family member’s, and giving them… Assigning that person the task of determining, is that family member capable of staying in this room?

Do we need to remove them? How far do we need to remove them? And kinda trying to keep that at whatever is minimally reasonable, because, I mean, it’s gonna be different for every person that’s in that room and what they can actually take. So- And what kind of things were helpful? What kind of things help a family member during that moment where you’re in shock, you’re trying to get information, you can’t process much information?

What’s helpful and what’s not? So one of the pieces of feedback I gave the hospital, because they came and asked me a similar question was, “What could we have done better?” And I said, “Because…” This is very unique to this situation, but because it was a labor and delivery, giving me some kind of task. [00:17:00] So Chloe came out and I got to meet her, but I didn’t scrub before I met her, which is typically something you do before you meet a new infant.

So if they would’ve taken me to have been like, “We need you to scrub so you can be ready to meet the baby,” just the process of scrubbing would’ve been something that I was like, “Okay, I need to do this,” to occupy and give me a task to do, for lack of a better term. Yeah, the sense of responsibility, I think, as a husband, as a father, to fix it, to be involved, to do something in such a dire moment is so innate.

Yeah. And so I know if someone had told me to sit back and just watch things happen—and granted, I’m clinical, right? Like, I have personally bagged my own daughter in a pre-op room. And if I had been told to back off , I think I probably would’ve gone into some sort of hysteria. And granted, there really wasn’t anyone else in the room to do it.

So I can only imagine needing something to do with all that panic that you’re feeling. And I think even during critical illness, right? [00:18:00] Yeah. Uh, we can kinda get into that, too, but families need a responsibility. Yeah. Yeah. Most family members. Finding some task to keep them occupied. Yeah. And I think it’s important to know, like Eli said, every person is different.

So asking the question, “Do you wanna stay? Do you wanna go?” And then explaining, “If we let you stay, you have to keep your composure.” Like, setting that expectation. So then on the other side of if the question is asked, but then there’s not the explanation, then the family member’s being like, “Well, you said that I could stay.”

But, you know, there is that, like, you can’t be in hysteria in a room because that’s distracting. Well, and maybe even having that person that’s w- assigned to the family kinda explaining what’s going on. Oh, yeah. That would be helpful. That’s been my role. Yeah. Uh, I’ve been a companion to family members n- numerous times, and it’s, “Sit here.

Like, here is your spot in the room. L- If you wanna stay, you have to stay calm, and I’m happy to [00:19:00] explain everything that’s going on,” and just kind of keeping it quiet, but just saying, “They’re doing compressions. They’re now giving a medication to try to increase the blood pressure, get the heart started again.

Oh, now they’re gonna give him a shock. Just…” And very calmly, right? Yeah. Yeah. Yeah. Yeah, in a calm manner explaining process of… Because I mean, as a layperson, we don’t understand everything that’s going on. Yeah, absolutely. It’s not the movies. No. So they brought Chloe. They were running the code. I was sitting outside.

They brought Chloe out, and the plan, we had actually talked about this prior, too, if something had happened. I was going to go with Chloe. Mm-hmm. And they said, “No, you have to stay on the floor.” Because we need you near by what’s going on here. This is… They were the ones that made the decision that this is more important, you need to be here right now.

So I sent Brittany up with Chloe to the NICU, and I stayed on the floor. After things looked like they calmed down a little bit, they were able to get me to move to a room. [00:20:00] They put me in another labor and delivery room, and gave me some space in there to start making phone calls and talking to other friends and family, and informing them of the situation.

After, I want to say, 20 or 30 minutes, they came in and told me that they had moved her in the OR, and they were working on her there, so they no longer needed me on the floor and I could go up and be with Chloe. So I wasn’t actually brought over to the ICU until, I want to say, 11:00 or 12:00 that evening, and this incident took place around 5:00 PM.

So it was some time before I got brought over to the ICU. I think it’s also important to note that the OB who was the OB on call for my practice was in another C-section. So he kind of met the team when they were walking into the OR. He had stepped out of one C-section and then went into [00:21:00] another OR. And three months to the day before my AFE, there was a mom who had an AFE, and that mom unfortunately didn’t make it.

And so my OB has told me that that’s probably what peppered his decision to do the hysterectomy pretty immediately, because in that case, they did not. They waited to do a hysterectomy. But they… Yeah, they decided to do the hysterectomy immediately, and I think, you know, it’s so important to note that whoever is listening to this, if you put on scrubs I mean, you experienced each traumas right alongside the families.

And so I wholeheartedly believe that woman helped save my life. Yeah. But l- so later that evening, the NICU got a call that I was needed over in the ICU, and they came in, they’re like, “Can you go to the [00:22:00] ICU?” And I was, I just kinda looked at them like, “This is a big hospital. Where, where the heck is that?”

And it’s like- And- … they ushered you, like, like, “Oh, you’re a family member. You know how to play this role.” Yeah. “You are here. She’s there. You will go to her.” Like, as if this was something routine. Yeah, like something routine, and they’re just like, “Oh, yeah, just go on over to the ICU,” which is three buildings over, and multiple floor changes.

And I’m looking at them like, “I have no clue where that is.” Yeah. So- And even getting to the ICU is overwhelming in that situation. Yeah, I was like, I, I couldn’t find it if I tried, or it’s gonna take me an hour to get there, because I don’t know where I’m going. This is a- Yeah … massive hospital. I think it- It’s one of the biggest in the country.

Yeah, I think it’s one of the biggest hospitals in the country. So I, I, I told her that, and she’s like, “Oh, can you get to the bottom of the elevator?” And I was like, “Yes, I can do that.” She’s like, “Someone will be waiting for you at the bottom of the elevator, and they will take you the rest of the way.” And I was like, “Great.

I can do that.” [00:23:00] So Deb met me at the bottom of the elevator. I just remember she met me at the bottom of the elevator and actually took me to where I needed to be, and she stayed with me for quite a long time. was that helpful? Yeah, it was nice to have somebody, because she knew that that time of night nobody was, like I was by myself.

Yeah. Did they prepare you before you came into the room in terms of what you would see? Yes, they, I do remember them kinda trying to prepare me, and I don’t think there was really anything they could say for me fully to understand what I was going to see when I, when they brought me into the room. I remember I didn’t stay in the room very long.

It was a very brief interaction, because I wanna say when they got me over there, they brought me in to see her, and then they brought me right back out, and they’re, they told me there was additional bleeding, they needed to take her back into surgery. And they called me over to basically approve that next surgery.

[00:24:00] Wow. Which at that point, I mean, how am I supposed to really y- have any informed consent as to what’s going on? It’s like, just do whatever. Yeah, I’m like, just, yeah, if you say we need to do it, then go ahead and do it. And what was it like for you to see her, and then, uh, to be apart from her again? It was surreal, and it was very, I don’t even know how to describe it, because it, she didn’t look like her when they brought me into the room.

And so while she was in surgery, you were … I was in a waiting room. Okay. Deb stayed with me in the waiting room for- Okay … quite some time that night. What I was told is she stayed with you because it was, I think, 2:00 in the morning by this point, somewhere around 2:00 or 3:00, and I was taken back into surgery, and my mother-in-law and my sister-in-law were at the hospital, and they were supposed to be sleeping, but neither of them could sleep.

So once Deb and other people [00:25:00] realized they were actually awake- They brought them down … then I think Deb stayed with you until your mom and your sister came to be with you. And so she returned from surgery, and it was, sounds like it was just touch and go for a while. It was for days. And I remember another question, every time they would come to me and they’d ask, like, “We need to do this,” I’d ask a few questions, and the first question was, “Well, what if I don’t?”

And just to understand what’s the consequences- That’s- … if I tell you no, and what’s the benefits if I say yes? Why are we doing this? And then the other question I would always ask would be, “What’s the worst case scenario? Like, what’s the worst outcome of if I say yes, what’s the worst thing that’s gonna happen?

Or if this doesn’t go well, w- what’s the next thing we do?” And I remember at one point we got to the answer of, “Well, there is nothing else we can do.” This, a- w- when we got to ECMO, I asked them, “What’s the next thing we do past ECMO if ECMO doesn’t work?” And they’re like, “There, there really is nothing left.”

[00:26:00] And that was a strange moment to be like, okay, well, this is our last ditch effort here. There is nothing- No further option. And I did that to understand and prepare myself, so when the doctor came back in the room to tell me what the outcome was, I already knew the worst-case scenario. And it helped you maybe- I, I feel like that definitely-

be grateful for any kind of step of progress or- Yeah. Yeah, because I could be happy with, okay, well, that’s not the answer they’re giving me. Mm-hmm. They’re not giving me the worst-case scenario. This is good news. Would you recommend clinicians just say outright the worst-case scenario? I don’t think, uh, I personally have not been one to be like, here, like, to just throw out the worst-case scenario.

D- the families are so different as far as what they can handle. That’s gonna be so different- Do you have any recommendations … on a person-to-person basis. I mean- Yeah … for me, that, I feel like that was important in that it, it let me start processing, what is the worst-case scenario here, and where do we go from here, and start thinking about, okay, well, then when they come to ask me to make the next hard decision, [00:27:00] I now have time to think about that hard decision before I have to make it, because normally when you walk in a room and you’re like, “I, I, we need a hard decision,” we need the answers now.

You, you, patients don’t have- So some sort of warning of like, “Hey” … the families don’t have times to think about that- Yeah … or contemplate- “It’s looking rough. It, we may need dialysis down the road. Okay, hey, now it’s time to talk about dialysis.” Yeah. That kind of heads up. So for me, it was helpful to kind of pre-process some of that.

Mm. So I could have those decisions ready and feel like I was making good decisions. And during that time you were not able to discuss any of this with Kathy? No. No, she was completely in a coma, could not speak. I had to make every decision on my own and do the best I could. I at least have a twin sister that he talked to a lot, so kind of like having an extra Kathy.

Not really, but kind of. He was like, “No, that was not my wife.” He had several people he could process with, and I mean, we do live in an area called Medical City, so [00:28:00] we had friends in the medical field that I could call for different things and be like, “I need you to explain this to me on a level that I’m going to understand.”

Yeah, and Kathy, obviously, that was a crisis situation. Maybe you did have to be sedated. For ICU clinicians that are trying to consider avoiding sedation when able, what would you explain the value of being able to ha- make those decisions with the patient themselves from a family member’s perspective?

Yeah, I mean, I definitely remember asking about sedation, and at the time I was all pro-sedation. I’m like, “Why, why would you wake her up?” Like- Right … that sounds like crazy. Like, leave her asleep. She’s got a tube down her throat, her chest is open. Like- She’s been through enough … she’s been through enough.

Let her sleep and we’ll wake her up when she’s better. So I think if someone, if a clinician came in and was like, “Oh, we’re gonna wake her up,” I would’ve looked at them like they had four eyes and been like, “You’re crazy.” Now, after hearing more of what [00:29:00] you do, Kali, and some of the research behind that, I would have a very different opinion about that.

Do you wish that you had been told, and now that’s hard in that moment when we’re really just trying to focus on survival. So maybe once all these procedures and in and out of the OR and ECMO being placed had finally subsided, do you feel like it would’ve been helpful to be taught and explained the risks of sedation, even if it was unavoidable, that this could cause a brain injury?

She may come out very confused and very different. Oh, no, I think that would’ve been very helpful to have all those things explained to me. I was m- definitely a family member that wanted to understand everything that was going on. So in that sense, yes, I wanted to know what all the risks were, and I wanted to calculate, at least cal- try to calculate in my mind what all these risk factors were to try to make the best decisions possible.

I mean, I know that at one point we knew she was having blood clots, and we were pretty sure there was bleeding in her [00:30:00] brain, and she was too sick to move downstairs to the imaging. So we had… They were just kinda guessing of what to do, but sh- there was also increased pressure in her spinal column. So I had to make the decision, because the increased pressure in the spinal column was causing paralysis in, in her body, of what to do at that point.

Because what one of the doctors had explained to me was, well, if we remove the pressure, because they were gonna do some kind of spinal tap to release that pressure, the spinal cord and the brain are all the same pressure system, and if we release that pressure, then that bleeding’s gonna get worse. So we had ultimately, I also ultimately made the decision at that point to not have them release the pressure and risk the additional paralysis, as to not have more bleeding in the brain.

That’s a hard rule. You rationalized it as it’s okay- The brain’s more important. Yeah. You [00:31:00] can live with paralysis, you can’t live with dead brain. Mm. I also wanted to add, like I have the unique experience of being the patient and a family member. At Cleveland Clinic, my dad went through an intensive care stay and, you know what, I was obviously was not the one making the decisions, but seeing my dad come out of the ICU a vastly, vastly, vastly different person.

And it’s taken probably seven years, maybe eight, for him to remotely get like his confidence back. However, like just the anxiety and the depression and the PTSD and it like, you know, brought up war trauma and all of these things. And he remembers things from his coma and he had the hallucinations and thinking nurses were stealing from him and like the TV was showing inappropriate images.

So he had a lot of that confusion and delirium in present moment. [00:32:00] And I’m trying to remember. I think he was only in a coma, I say only, three days is still a long time. He was in a coma for three days. So shorter than a lot of people who go through the ICU, but still it was enough to really set him back physically, mentally.

Yeah. And your family was probably not told anything about that. It’s like, “Hey, he’s got sick lungs.” No warning of a brain injury coming. Eli, you knew that she, we had suspicions of bleeding in the brain. She had high pressure in the brain. They w- were talking stroke. You had some warning or anticipation of some neurological injury, right?

We knew that there could be a neurological inju- injury and actually not even could, but there was most likely a neurological injury. We just couldn’t assess what that neurological injury was until she got better. So when they turned sedation [00:33:00] off, what were your expectations of how she would emerge from that coma?

You know, I think that they just, they just said she’s gonna wake up at some point and we’re not sure when. And how long did it take? Days. So you were there every day being like waiting for her to open her eyes and come back? Yep. I mean, I don’t think I left the hospital for the first … What day of the week was the event?

It was on a Thursday. And then- It was on a Thursday. I didn’t leave the hospital until Monday. Yeah. And at some point, I think it was like Saturday, one of them was like, “Have you slept in a bed yet?” And I was like, “No.” And they put me in an on-call bed and was, they’re like, “You should sleep for a couple hours here.”

I remember warning p- families all the time, like, “Hey, ICU delirium is very real for patients and families.” Mm. It’s sleep deprivation. I mean, that’s one of the main causes. You don’t have to be critically ill to have sleep deprivation. This happens by torture by sleep deprivation. People have, without [00:34:00] critical illness, they are being tortured, and they can have hallucinations, brain injuries, and afterwards they have cognitive, physical, and psychological damage.

So you don’t want that happening to families as well. Oh, yeah. I’m all about families being able to stay overnight, but I think it’s important early on to say, “This is gonna be a job, and it probably needs to be treated like shift work. Someone needs to come and stay for a shift. Someone needs to come and stay for another shift so that the, uh, spouse or whatever can, can step away and sleep.”

I know that in a situation like yours, Kathy, where you were young, you were healthy, you had this crisis, we’ve got ECMO. Eli, did they ever pose to you that this was the beginning of a many years journey? They, yeah, they did, they did pose to me that this was the beginning of a long journey, and it was probably gonna be y- years and years long.

But they, I didn’t really fully process what that meant. Yeah. How can you, right? Yeah. I think it’s really [00:35:00] important to take care of families, make sure that they are sleeping, eating, resting, and it’s so hard in that kind of situation. But if you wear down the caregiver’s body, mind, soul with depriving it of basic needs, how does that then impact your ability to cope with all this trauma you’ve been through or to then be there for Kathy when it is your turn to, to do all the things?

What are your thoughts on that, and how do we allow families to be involved but also make sure that they are being taken care of? If you’ve been listening to this podcast, you’re likely convinced that sedation and mobility practices in the ICU need to change. The ICU community is facing incredible difficulty with the trauma from the pandemic, staffing crisis, and burnout.

We cannot afford to continue practices that result in poor patient outcomes, more time in the ICU, higher healthcare costs, and greater workload for the ICU team. Yet the prospect of changing decades of beliefs, practices, [00:36:00] and culture across all disciplines of the ICU is a daunting task. How does this transformation start?

It can begin with a consultation with me to discuss your team’s current practices, barriers, and to formulate a plan to help your ICU become an awake and walking ICU. I help teams master the ABCDEF bundle through education, consulting, simulation training, and bedside support. Let’s work together to move your team into the future of evidence-based ICU care.

Click the link in the show notes of this episode to find out more.

That’s a good question, because I don’t know that I would’ve left if I was told to. Yeah. Was there a bed in the room? No, there was not a bed- Like, a couch that turns into a bed. There was not a bed in the room, and the one rule they gave me was I was not allowed to sleep in the room where she was at. In the ICU.

And they, they’re b- like, “You can do anything you want. You can be here as much as you want. You can come and go as you please.” [00:37:00] Because it was a secure unit, but they said, “The one thing that you can’t do is you can’t sleep in this room, even naps during the day.” I think the same is- ‘Cause I think I fell asleep once, and they woke me up, and they’re like, “You can’t sleep in here.”

NICU, I could sleep in the NICU room. Okay. So one of the k- key parts of what made our awake and walking ICU so successful is that families were treated as part of the team. They didn’t get kicked out at night, but they have to be taken care of as well. And so certain patients, we didn’t have couches that turned into beds in every single room, so we were strategic about knowing, okay, as someone’s coming in, y- you kinda know if it’s, like, a patient with DKA, they’re not gonna be there for days on end.

Their family maybe doesn’t have to be there all the time. Certain other patients, like some of our bone marrow transplant patients or just certain other diagnoses, Cathy, yours would be one that we would think, “Okay, let’s make sure we put them in a room that has this couch bed situation that will facilitate the families being able to stay overnight [00:38:00] and to sleep during the day or night.”

Like, make it a restful environment because we’re not just treating the patient, we’re treating the family as well. Yeah. Now, you’ve got hospitals with the really old, antiquated rooms. They don’t have room for any of that. But as we design our hospitals, it is something that we really need to consider is, how do we make it a restful environment that allows families to be available for their loved ones?

I might be jump- jumping ahead a little bit, but from my perspective, too, it was really scary having to stay in an ICU by myself. It’s a situation I wouldn’t wish on anyone because, again, for multiple days I was intubated, and they probably did give me a call button, but I don’t think that I even remembered how to push the call button.

Or could you physically push it? I don’t think I could. Like, my, my hands were sausages. Mm-hmm. I mean, I had, like, no space between my fingers. That’s how [00:39:00] swollen… I mean, my right hand is still swollen to this day. That’s how swollen my hands were from the fluid overload. And I don’t think I had the wherewithal.

I mean, maybe I did. I can’t quite remember. There’s some things about the ICU that are pretty fuzzy, but, you know, I don’t think that I, like, thought, “I have this need. I need to call the call bell, uh, the button.” Like, sometimes those multi- like, what is that considered? I think it’s executive functioning.

Planning things out like that w- was a skill I had to relearn. Yeah. And being unable to write, text, talk The, there were communication gaps that I’m assuming Eli could understand you better than anybody else during that time. Yes, that was- Oh, absolutely … once we got home, it definitely, or once we moved to rehab, it really wa- it felt like I was an interpreter and had to interpret everything she was saying.

She would speak, I would listen, I would then talk [00:40:00] to you, you would then respond to me, and then I would break it down to very simple, basic words to then say those back to her. And it might take two or three times for me to talk to her for her to understand, and then go through this process again. But yeah, it very much felt like being an interpreter.

Multiple years. Yeah. Wow, for years. Yeah. Yeah. It will happen, like, if I get tired, if I’m like, you know, 10 o’clock at night, definitely still not firing on all cylinders And did anyone explain to you why that was happening or kind of what that recovery would be like? Eli, did anyone explain to you delirium?

No, I don’t think anyone explained to me delirium or what it was or what to do with it. It was just a side effect that we just had to figure out. And then I feel like there was a lot of things that we were just left to figure out. Yeah. ‘Cause there were some motor impairments explained by the stroke.

Yeah. My assumption was it was [00:41:00] just part of the brain injury and that it just was what it was. When I asked, “Is this gonna get better?” The answer was, “Well, we don’t know.” Which is, you know, kind of the case with delirium. Yeah. You just don’t know if it’s gonna recover, at what rate it’s going to recover. Did you have anyone else that you could talk to, like a support group, other spouses in similar situations?

I remem- so there wa- we had a friend that was… It was about two years prior, her husband had been hit by a car and taken to the ICU and was in critical care as well. And I remember through the first couple of days, everyone saying like, “We just can’t imagine what you’ve been through.” So I remember eventually saying, “Well, I’m tired of hearing this.”

So I was like, her name was Anna, and I was like, “Go get… Someone go get Anna and bring her up here, because I wanna talk to someone who’s, like, gone through this before.” Yeah. Yeah. So that was helpful. And [00:42:00] what did it mean to be able to talk to Anna, and how did that impact you to have someone that actually understood as a resource throughout this journey?

It was definitely helpful to have somebody who could understand and help process through that. Yeah. How do we standardize a process in which Annas are av- available to families? ‘Cause I, I’ve heard of survivors and families wanting to help, wanting to get involved. How do I make that an option? That’s a hard question, because honestly, I think if they would’ve brought a random person in the room I didn’t know, I think I would’ve looked at them and been like, “Why are you here?

I don’t wanna talk to you.” Hm. And the only reason that that worked was I already knew her. Yeah. And it was somebody coming in the room that I already knew that went through that situation. So, and that could be different for every, every person. [00:43:00] But maybe just the recommendation of, like, “Do you know anyone who’s gone through something similar before?”

And even though the events were not identical, they were close enough. Well, and I know, like, I’m on a couple of councils at the hospital, and they’re trying to pilot mentor/mentee. They’ve started in the NICU, so families who have gone through the NICU are now trying to mentor families. And obviously there’s always the question prior to, like, it’s not pressured on and, you know, you can dissolve the relationship at any point in time.

And with AFE survivors, I’ve wanted to be, and ECMO survivors as well, you know, I’ve kind of wanted to be that sounding board for people locally in person. I think for the right person, it, meaning the person who wants that, I think it can be incredibly, incredibly valuable. ‘Cause I just think as clinicians, unless you’ve laid in [00:44:00] that bed, you don’t know what it’s like.

I mean, you’re vulnerable, you’re wearing uncomfortable clothing. There have been so many clinicians that have tried to explain things to me. One in particular, I refused to see him without Eli present, ’cause he would just talk at such a high level that I just couldn’t even begin… And he would talk so fast, so I couldn’t understand.

And granted, like, we would FaceTime or do a phone call so he didn’t have to be in person all the time, ’cause he works and, like, is taking care of kids and, you know, he’s busy, but I just think, like, that shouldn’t be the patient’s responsibility to provide that person to help understand medical terminology.

Well, and that’s where that translator came in. I had to be there as the translator in that period to e- for her to even talk to the doctors. It’s ridiculous. Well, and the other [00:45:00] unique scenario about this was because this was labor and delivery, Kathy wasn’t the only patient in the hospital. I had the ba- I had Chloe in the hospital as well, and I had to be attending to her doctor and medical team as well, and th- they’re both on two separate wings of the hospital, two completely separate teams.

Which was, so it was a lot of medical staff to be talking to. Well, and I had- And so much information. Yeah. I had every specialty on my case, so it was a, a lot of people. A- and Eli, you’re a very educated, highly intellectual individual. For out, out of family, it was like you were one of the most qualified to understand information, research it, stay appraised of everything.

And yet I just can’t even imagine, like, how much information that is. I- I’ve been a family member. My daughter has had numerous hospitalizations, and I, like, slept in the crib with her in the PICU, [00:46:00] and I, like, didn’t wanna talk to anybody. Even though I understood the information and she wasn’t even that complex of a case, I just…

It was like, “Everybody just get out of the room.” Like, “I will suction her. I will do the things.” I, I didn’t wanna talk to anybody. So if anyone had come to me and said, “Hey, I have a child with chronic conditions, severe disabilities, airway stuff. Let’s chat,” I probably would’ve been like, “I’m fine. Go away.” Why are you…

Yeah. But then when the doctor actually recommended a palliative care consultation, which has a very different connotation in the PICU, but I wasn’t prepared for that. It was like, “Hey, you have a long journey ahead. You have a lot of chronic illness, like, chronic condition. This is life-altering. Talk with a…”

Basically, I call palliative care chronic illness doulas, but I didn’t see them that way. And so I was like, “Okay, fine,” but I was like… And I hadn’t cried, right? When I stepped out of that room, and they just, like… It was someone apart, someone that, like, did this, that understood, who asked the right questions about how I [00:47:00] was doing.

Like, boom. But having someone there that was, like, there for you to talk to you about what you were going through, that was Anna. There was other people who also came in and helped, helped speak to me t- as well. Was there a certain approach that the clinicians had that was h- more helpful for you to support you than others?

The ones that weren’t rushed- Mm … were definitely more helpful to me. Because there were definitely clinicians that flew in and they had their five minutes in the room, and they were ready to go. And I was like, “I didn’t really even feel like I got all, half my questions answered.” Mm. And then there was other ones that felt like they stayed for an hour talking about the case and under, making sure that I fully understood what was going on.

Do you feel like there were certain clinicians that were more emotionally available than others? ‘Cause everyone’s different, and this is a very emotional situation. For [00:48:00] ICU clinicians to have a complication of birth, it’s really hard. It’s like unless you’re in an OB-focused hospital, that’s not why we’re here as ICU adult clinicians.

Yes. Like, we don’t wanna do the whole baby thing, and this is just, it’s so personal, it’s so sad, it’s so stressful, it’s so emotional. A lot of times you were probably about the same age as many of the nurses and doctors there. So it’s like I know that Kathy’s room was, like, everyone’s heartache of the unit.

Yes, I’m sure. Did you feel that? Yeah, I definitely felt that. And so I’ve befriended one of the nurses who was on the floor when I was there, and she says if sh- there’s a code in the L & D, she doesn’t go. Like, she cannot do it anymore. And I’m like, “I totally get that.” Like, all of the men go and do that code.

Yes, I was on the rapid response team for a while on, in a hospital that had a L and D floor. And every time, and I wasn’t even a mother yet, but every time a code was called, it was [00:49:00] automatic nausea. Like I, if I had, you know, wearables at the time, my heart rate would’ve been at least double for those codes rather than others, just because it’s, yeah, it’s so personal.

What kind of difference does it make when the clinicians come in, if they’re not emotionally prepared, or can you tease that out? Or what kind of emotional availability was helpful to you, and what was not helpful? I don’t think I necessarily needed the emotional availability from the clinicians themselves.

I understood that they were very focused on a task, and in some ways that was important that they were focused on that task. Their most important thing was making sure he was all right, or in whatever specialty that they were focused on was all right. I think making sure that clinicians were talking, especially with us, me, and each other, s- because there were so many specialties on the case, and ensuring that once you get that many specialties on the case, every clinician [00:50:00] is focused on their thing.

You br- you bring in a cardiologist, well, it must be a cardiac issue; and a pulmonologist, well, it’s something with the lungs. And everyone’s looking at their thing. But trying to get everyone to look at the whole, I feel like sometimes was difficult. And you could feel that? Yes. If you thought there was disconnect, how did that impact your confidence?

Definitely times where I was worried because one doctor would come in and say, “We need to do…” I don’t even remember what the scenario was, but, “We need to do this to best support the heart.” And then another doctor comes in and says kind of the opposite thing, but to support a different system. And I’m like, “Well, wait a second,” like, “the last doctor said that we’re concerned about the heart.

Like, why are we doing something that’s gonna be, gonna have a side effect towards it?” Like, we all need to sit down and make sure that we’re on the same page, all working together, and not just protecting our specialty. [00:51:00] We have so many jokes and memes and skits about cardiologists versus nephrologists because it’s a real thing.

Those are real dynamics in the hospital because management can, of one can impact the other. Yeah. And I guess I hadn’t really thought about what that’s like to play that kind of, like mental ping pong with the families. Yeah, so that was definitely hard. And I definitely remember at one point being like, “No, I, I want all the doctors in here at the same time.

You two have to duke it out with each other and then tell me what the plan is.” Approach the families with like a set plan- Yeah … and rationale as far as why that plan is, but not leaving that, that conflict That can’t be left to me. Yeah, right. Yeah, that’s very stressful Like, I need you to come to me with a solid plan that all the doctors have agreed upon.

There were definitely other times where I had my own opinions and, mm, you know, some of the doctors agreed with me, some of them didn’t, and I just [00:52:00] did what I needed to do to make sure that the doctors that I agreed with were the ones that got their way. So… Yeah, there was definitely a situation where the, the one doctor told me we ac- absolutely could not extubate her and we needed to do a tracheotomy, and I was very against the idea of that, and he actually made me sign off on it and they had it scheduled for the next morning.

And my, and my big push was like, “Well, can we do a breathing trial right before we do the tracheotomy to be 100% certain that this is one, uh, absolutely necessary?” And they’re like, “No, we’ve done too many of them. We just need you to sign off on it, and we’re gonna do it in the morning.” So my plan was just literally just show up in the morning and be like, “I revoke consent.

Do a breathing trial.” I was all planned to go down to the hospital before that was scheduled and just basically remove the consent from them. But I had talked to the night doctor the evening before and she’s like, “Oh no, I think we might be able to allow [00:53:00] her to come off the trach and we can try it- Yeah

and the worst case scenario is we’re gonna have to do an emergency trach and we’ll have to do a bedside trach.” And I was like, “Well, that doesn’t sound too bad to me. Let’s go ahead and try it.” And I don’t think that the doctor that had scheduled the trach in the morning was terribly thrilled to come in the morning and find that we had overridden his instructions.

She was awake and breathing on her own, and we, we gotta skip the whole side effects of having a tracheotomy- But- … which was a whole nother set of trauma that we didn’t n- actually need to go through. 1,000%. You’re talking to like a group of clinicians that are totally on your side who are all about early aggressive extubation and avoiding tracheostomies, and that was your intuition.

Yeah. You did prevent a lot of harm with your advocacy. Yeah. Well, my thought process through the whole thing was just any procedure that was not absolutely necessary, like let’s let her body fight and do what it can for itself before we have to [00:54:00] medically intervene and cause more damage. Because ultimately any surgery that we do is more damage.

I think as clinicians, it’s easy to say, “Oh, well, Eli, you’re not medical. You don’t know what you’re talking about. This is just the way it goes. This is how we do it here, and because we do it this way, it must be best.” Yes. But the perspective and the insights of a family member can be lifesaving. I’ve seen that repeatedly.

We can’t necessarily always go along with what families are recommending, but allowing them to ask questions and allow ourselves to be questioned and to pursue those questions, to make sure, to double-check that what we are doing is essential and the m- most updated evidence-based practice. Why do we do it?

So do we do tracheostomies because it’s always essential, or b- it’s because it’s what we’ve always done? Because a patient on ECMO oftentimes ends up with a tracheostomy for ventilator weaning. Are we really being aggressive in breathing trials? So yes, I feel very [00:55:00] passionately about that. I think you clearly did the right thing.

She ended up breathing just fine without it, so she didn’t actually need it. Absolutely. I mean, there was a situation where they wanted to do a fasciotomy in the OR, and they came and asked me, and I asked them, “What happens if we don’t do this?” And they’re like, “Well, it might cause a clot.” And I was like, “Well, what happens if she has a clot in a room later?”

And they’re like, “Well, we do an emergency bedside fasciotomy.” And I asked them, “So what’s the additional risk for that?” And they’re like, “Well, there’s not really many additional risks to that.” And I was like, “Well, then let’s wait.” Let’s take the risk that we don’t have to do it. Yeah. Yeah. And I was like, worst-case scenario…

And basically it came down to, “Well, it would be inconvenient for us to have to do a bedside fasciotomy.” And I was like, “Well, we’re not here for your convenience.” Ooh, I had a kind of an exhale, ’cause that’s- it’s true, and that’s a hard thing to look at as an ICU clinician, to be like, “Yeah, there are things that we do because we love to have control.”

Yeah. We love [00:56:00] to plan out our shift, our day, our units as much as possible, because so many things change and so many things are beyond our control. So the things that we can control, we are dead set on controlling, and that’s not always a good thing. Love that you come in and, and ask, “Why? Do we have to?

What if we don’t?” Just to make sure the clinicians are making decisions for Kathy and not just for us as the team and the convenience of, again, having that control and having it planned out. Yeah. And sometimes we… It is for safety. Sometimes we perceive it as for safety. I don’t think we always understand our own motives or what’s inspiring the decisions that we make.

Yeah. And minimizing emergencies that you have to go deal with now is wonderful for your schedule, but if that means causing more damage to a patient’s body, that’s detrimental to the healing process. Well, and I think it’s important to note that there probably, outside of the incisions, there probably [00:57:00] was more damage to my leg as a whole.

But the damage would’ve been more severe- When the doctors first came to me and explained to me what an amniotic fluid embolism was and how rare of a condition it was, and one of the things they said was, “Well, we don’t fully understand everything that’s going on,” is it is such a rare condition. I had asked the doctors, “Well, do we need to be collecting samples or doing some kind of research or collecting data for research on this?”

And the response was, “Hmm. Yeah, but we don’t really know what to do.” It was strange to me that there was no procedure in place to have this rare condition take place in front of medical professionals, and that data not be collected in a way that could help future patients. Spoiler alert, there is now a process.

Or I, I shouldn’t say now. It probably was in place years ago. But the Amniotic Fluid Embolism Foundation, I should know this, I think you’re supposed to pull a purple [00:58:00] top and a red top, and I think you’re supposed to put it on ice. But go to the AFE Foundation’s website. The AFE Foundation has a whole procedure of what to do, because I believe you have to do it before the BP meds are administered.

I think it’s, like, a quick blood draw, and it will help us- save future patients. It will help save lives and hopefully decrease the severity of the conditions. Oh, that’s a- And not just for AFE, but all conditions. Yeah, good point. Also, I didn’t agree with the fact that the L&D team told Eli not to Google it.

I would’ve done it anyways because- Yeah … that’s who I am. But I think it would’ve been, it would’ve given Eli support, because the AFE Foundation then could’ve reached out to him and could’ve known, like, one, one simple thing is, like, taking pictures of your loved one in the ICU. Like, obviously Eli didn’t know if I wanted [00:59:00] pictures or not.

Mm-hmm. I did. I do now, but he didn’t know that. Now it’s not an option. Now it’s not an option. He at least did take a picture and a short video the first time I, quote-unquote, “met” Chloe Anne when I was still sedated. So we do have that, but that’s literally it of the entire… We didn’t even really take a picture for another, what, two to two and a half weeks.

So we weren’t documenting the journey all along the way, and that’s one thing that the AFE Foundation encourages is to take those pictures, ’cause if you don’t know if your family member wants them… I mean, don’t do it if you definitely know it’s a no. But the AFE- the AFE Foundation encourages it because if your family member wants them, wants the pictures, then you have them, and if they don’t, you just either trash them or don’t show them to them.

Like, it’s not a big deal. Well, there’s so many organizations that exist. We don’t point families towards those- Yeah … the way. So I’m even imagining just making [01:00:00] a list, and maybe we’ll do this later, but, like, make a list of different organizations for different diagnoses, and just make that available so if you have a patient come in with X, Y, and Z, boom, you know where to send them.

Um, and send them to the right sources, right? You don’t want them to get a bunch of in- misinformation, but they need information, so- Absolutely … send them to the experts. Exactly. And so I think it’s important that it’s complicated, like with most decisions. But I think Eli did a great job of following his intuition on many fronts.

And I think we underestimate just the power that stewardship of being a spouse, like that connection, spiritualism. You guys are a faith-filled family, and so there are things that don’t show up on an academic certificate, but can be very impactful, and I think it’s important for ICU clinicians to respect and honor that, be open to it, and to be collaborative with families in making those decisions.

And then that can be a hard thing, ’cause some families [01:01:00] are more equipped than others to be involved in a lot of those decisions, so it’s really hard to make a set protocol for how to engage with families- Yes … I’m sure. But I think if we have a bad interaction with a family when they can’t fathom science, medicine, they’re trying to advocate for crazy things, that could impact how we approach the next family.

You know, we kind of paint all families with the same brushstroke. So i- it’s very important to stay open to the insights and recommendations or i- just questions of the family me- members. Mm-hmm. So as you approach recovery, you knew that she’d had a brain injury. Her body had become very weak. Eli, what would have helped you, and I guess Cathy as well, have realistic expectations for the future or to, like, even be remotely prepared for what life would be like after?

Well, one thing I wanna say is one of the things that made it definitely harder was we went down to the step-down unit, and unfortunately, one of the nurses didn’t read [01:02:00] Cathy’s chart- … and goes up to her and says, “Oh, honey, you’ll be going home from here.” And me and the doctor came in later and was like, “No.

No, you’re not. You’re going to rehab. You have to go to rehab.” I was so mad. And she was so mad at us. And I was like- You guys are bad guys. Yeah, I was like, “This, this is not something we’re gonna back down on. You’re going to rehab. You are not well enough to go home. I can’t take you home.” Yeah. And looking back, like, i- in the evaluation, I couldn’t even stand from a chair in my own power.

So it was maybe a little lower than a chair, but still. You know, like, at that point, I still wasn’t going to the restroom on my own, still a lot of ICU delirium. I actually at one point thought I transferred hospitals and was trying to convince Eli that I had gone through, like, the woods and the trees ’cause the ECMO unit used to be right next to the pediatric unit, and they have murals all over the walls, which is great, except it’s confusing to an ICU patient coming out of delirium.[01:03:00] 

Mm. So I tried to convince Eli that I transferred hospitals. That… And I remember what that felt like. I was adamant. Yeah. I was like, “This is what happened.” And I was like, “No, honey, we have not gone anywhere.” And I kept saying, “But there were b- birds and trees and fish and turtles.” And it was so real to you.

“I came to the same hospital.” And I was like, “No, you didn’t.” It was like, “I’m the next building over. Like, we’re not that far from where we were.” But for, for me, like, just going from where the ECMO unit used to be to the new building, I think it was, like, a 15-minute walk Did anyone … No one used the word delirium.

Do- were you- Oh, no … assessed for delirium? Oh, no. Probably not. So you were probably calm. You probably could follow commands. You knew you were in the hospital. Now which hospital, that wasn’t probably being questioned. So did anyone probably even realize how confused you were in your mind? My personality is when I’m in trauma or stressful situations, [01:04:00] I get quiet and I get small.

I’m not gonna be that patient who is gonna become combative. If anything, I wanna get as small as possible so people don’t see me. I don’t enjoy being the center of attention. So I think it’s important to note when you’re assessing for delirium, you have that person who is gonna get combative.

Unfortunately, I’ve heard of many nurses getting injured. But then it’s also important not to overshadow or overlook the patient who, who retreats. Because even one of the things they had put on Grey’s Anatomy, I don’t recommend putting on Grey’s Anatomy for your ICU patients. Don’t put on Grey’s Anatomy.

So they put on Grey’s Anatomy for me, ’cause they’re trying to, like, build memories, connect dots, et cetera. So I understand why they did it. Still, don’t do it. I don’t know if that’s clear enough. Do not put on Grey’s or any other medical show for a patient who’s in the ICU. The episode would end, and the ending credits would come on, and sometimes [01:05:00] it would be, like, be the end of the season, and I didn’t understand how to change it.

But it would just play for a long time. And then the nurse would finally come in and be like, “Oh, let me change this for you.” And who knows how long I listened to it for, but enough that to this day I cannot listen to the ending credits of Grey’s Anatomy. That is a trigger for me. Which sounds horrible.

It’s actually kind of comical at this point. We laugh about it now. But you know, it’s like, “Oh, my God, where is the remote?” Like, it needs to ch- A- and it’s this, like, panic that I can’t even control. It’s hardwired- You know, it’s this- … into your brain. Oh, it’s so hardwired. Again, at that point I was still intubated, so they’re doing, they’re still doing very traumatic things.

The suctioning of the tube is awful But, you know, so they’re still having to do high-level care. So my brain connected that high level of traumatic care to Grey’s Anatomy, which is weird, [01:06:00] but that’s what happened. And the intentions were to bring distraction, comfort, engagement, right? Yeah. And you had no way to tell them, “Okay, that’s driving me crazy.”

No. At the time, I don’t think I even understood that it was driving me crazy. Yeah. ‘Cause again, like, in those stressful, high level of situations, I retreat. I get small. I don’t … I try to, like, not ripple the water, so it- And we like a quiet patient, right? So they’re probably like, “Oh, she’s just sleepy.” “Oh, she’s good.”

Right. “She’s fine.” Yep. Yeah. But then when I did wake up, I do remember one nurse practitioner, I believe I was extubated at this point. I’m, like, 90% sure I was extubated, ’cause I kind of somewhat remember, like, talking to her. But I remember asking for a sleep aid, ’cause it was like, I don’t know, 10, 11 o’clock at night, and I still wasn’t sleeping.

And granted, I’d taken a [01:07:00] nap that day, but still, asked for a sleep aid, and they refused to give me a sleep aid. I’m like, “I’m in an ICU. I have no idea what day it is.” Part of my brain injury is it took years for me to be able to read an analog clock again, so I had no idea. It felt like hours would skip, but then at the same time it felt like 10 minutes.

It- I don’t know. It- it’s hard to explain. But I can’t understand what time or day it is, and granted, they would write it on the board, and they would go over it, but I couldn’t remember that kind of thing, and you’re refusing me a sleep aid. And she’s like, “Well, we just want you to get in your habit.” And I’m like, “I’ve literally been…

I just woke up days ago, and I literally just got extubated maybe 12, 24 hours ago, like, and you won’t give me a melatonin? Like, I’m not asking for fentanyl here,” right? Well, I had asked for a sleep aid at one point, too, and I just got the answer, “Well, you’re technically not the patient, so we can’t give you [01:08:00] anything.”

Yeah. And I’m like, “You guys are all medical professionals. Any of you guys can just simply scribble down a scri- simple script for me.” Yeah, that’s really tricky. It’s not quite as simple, and that is really hard. I- I know there’s legal things behind that, but- The legality is

stupid at this point Oh, yeah. Yeah. It was a lot. I mean- It still is a lot … one of the big things was just knowing what we needed to know to get follow-up care. Yeah. Because we were discharged with a list of doctors to follow up with, and I assumed that that list was complete and full, and that’s what I needed to do.

So th- there was a cardiothoracic surgeon on the list to follow up with. No one told us that that was different than a cardiologist. Oh. And from a patient’s perspective, well, it’s cardio, right? They all do the same thing. Wow. This is just a cardiologist that does surgery. So she had surgery, so this makes sense [01:09:00] that we follow up with him, and they say we’re good, and so we’re good.

So there were n- w- there was no cardio follow-up on a patient that had major cardiac surgery, because we didn’t know we needed to. Well, and it’s now that I need lifelong cardiac care. Yeah. A- and no preparation for that. Yeah. And post-ICU syndrome. Nothing- Nope … for post-ICU… Post-ICU syndrome wasn’t even mentioned I don’t think I heard about it until you talked about it, Kali Yeah.

I think that was, uh, my first exposure, and, like, my dad had it. Definitely. You started talking about it, and I’m like, “What is this? This sounds familiar.” Yeah, I think it was- … like, the meeting that we had for prepping for the conference. Yeah, ’cause Lauren may have mentioned it, but I, I think it was kind of like, “Oh, that’s just some- another medical acronym.

I don’t need to know that,” kind of thing. Like- It’s nice you to have a name for it, for both of you. You both have it. Oh, it’s great to have a name for it. It’s great to validate what it is and that it exists, and that, uh, ha- have [01:10:00] an explanation behind- Yeah … what th- this is. ‘Cause I think, too, like, I’d done multiple neuropsych evaluations, and after I was home, I think it was about…

I was home for about a year, I did- I wanted to do one. It’s kind of in multiple steps, and they say… So the, like, the, what we’ll call, I’ll call, like, the first step, the prelim step, they’re like, “Well, you know what a pen is, what day of the week is, you know who the president is. You don’t need the next step.”

But in all actuality, like, when I advocated for that second step when I… I think it was, like, year two or three when I was still really struggling with things, then it was like we found a lot of things to work on. And so it was good to have a game plan, but it would’ve been better to have that game plan coming home.

I will also say we had a… It was interesting and unique, the time period of when her incident happened- Oh, yeah … because her incident happened [01:11:00] a few months before COVID. Yeah. We- Lot of delay in the process- Yeah … of having access to the right physicians. Yeah. Uh, because we got home in October. Yep, mid-October.

And by February, March, everything was shutting down and everyone was like, “Nope, we don’t wanna see you.” Yeah. “We can’t…” or, “These procedures are no longer being offered because everyone’s afraid of COVID.” The hardest was I needed a pulmonary, a function test, a PFT- Mm-hmm … and they wouldn’t do it because of COVID, and like I’m struggling to breathe, you know?

So there’s that, I understand we’re burning fires here, um, like massive, massive forest fires, and at the same time that quality of life… Because also I had a complication six months after the AFE. That’s when like the light bulb went off, ’cause it was the cardiologist who [01:12:00] explained to me like, “This specific complication is from your AFE,” and I was like thinking…

or I told him, I said, “That’s six months ago.” He goes, “Your body is still healing. This is going to be long.” I, I think in the beginning, and granted, I know, I’m almost positive, Eli remembers too, like there were medical professionals who said, “You know, this is going to be a long road. This is gonna be multiple years.”

There wa- One of my OBs, who I actually really liked, she did come see me, I think just to check in, but, and she asked like, “Do you have any questions for me?” And I’m just like, “Nope.” Again, like that retreating, and that should’ve been a red flag, ’cause they’ve told me I had the AFE and they, the, they told me I had the hysterectomy, but I have no idea what an AFE is and no one explained it to me.

Mm-hmm. I did all of my own research. So I think… And like with the PFT, it, again, like I understand why they [01:13:00] didn’t do it, but I think it delayed my healing. I don’t know, though. I could be wrong. And did anyone pose this as you were embarking on chronic illness, lifelong disability kind of situation? Oh, no.

No. No. No, it, w- my dad encouraged us to apply for short-term disability. Since I was a stay-at-home mom, we had to go through the e- the SSA. And even the first couple times he said that, I was like, “Nah, we’re good.” Yeah, yeah. “This isn’t gonna take that long. We’re good.” Right. Yeah, yeah. She’ll, she’ll get back on her feet and move on.

And then it was the following January, so what, like three, four months later- Yeah … uh, we were finally like, “Okay, this is not getting-” better as quick as we thought it would. Because my dad was like, “You’re entitled to that money.” Mm-hmm. You know, he’s like, “You guys paid into that. You deserve it.” It’s- And having that level of support would’ve been great.

I mean, we still don’t have it years later. And it’s not even about… I [01:14:00] mean, the money is obviously great, especially it took me three years to get my license back, over three years. So Eli and friends and extended family are having to drive me around, and my then three-year-old wanted to do dance lessons.

And, like, had we had that extra income, I would’ve hired somebody to take her to dance. Mm-hmm. But, like, Eli couldn’t do that. He had so much on his plate. But more importantly, uh- The insurance … the insurance. The insurance. Like, we, like…

That’s a whole can of worms. But doing what you can to do- give proper documentation to your patients- Oh, yeah … to show that they are disabled so that they can access those resources, it’s not just about money. It’s about insurance, and it’s about them being able to get the care that they need- Yes … and the follow-up care that they need.

Because when we were in the hospital, anything and [01:15:00] everything was available to us, anything we needed. Once we left the hospital- Nothing … nothing. You have to fight for everything. Even my cardiologist has recommended fluids, like just saline fluids, and I’ve spent three days trying to find a place that will give me fluids that’s not an ER.

‘Cause yeah, I can walk into an ER, but you walk in there… And literally I had a virus, and it flared up my chronic illness. I had to go to the ER three times that week, and granted, they wanted to admit me, but I was like, “No, I’m going home.” This isn’t that… Like, I know my body well enough to know, like, this isn’t that serious.

But the first time I went, the doctor, I tell him my symptoms, and he goes, “That’s it?” Yeah, that’s why patients delay care. That’s why people die. Little phrases like that, those two words, “That’s it?” But I also don’t want to have to go to an [01:16:00] ER just to get fluids. But who knows? Like, if I had Medicare, I’d probably have a caseworker who could find that out for me.

Mm-hmm. And yeah, it literally is Mount Everest in the coldest blizzard with Eli’s trying to carry the family, like the entire family himself, and run his own business, and be a great leader for our family. It’s more than one person should ever have to take on. And Eli, did you- Have any concept of this role that you would be assuming as a caregiver, as, like, the physical

I mean, I’m a mom. We do so much, and I know Kathy still does so much. When you have those physical limitations, there’s a gap, and I’m sure you were already a very involved dad, but now having to do a lot of the physical caregiving that a mom would usually do, or another part of the team, you’ve got a man down.

Yeah. Yes. No, that’s been very hard, and no, no one explained that to me [01:17:00] or did I even fully process that. Yeah, it’s been very difficult to not only become a caretaker for Kathy, but a caretaker f- m- become mom for the kids, mom and dad, w- have a full-time job. And at first there was a great support network.

Everyone wanted to help. Everyone wanted to pitch in. But over time, that support has very much waned and disappeared. And even some of our closest friends, that’s disappeared. The bandit dust. That support system should wane over time. We don’t wanna make it seem like, “Woe is me.” We should, as a family, try and figure out how to do this i- to the best of our ability, because ableism is very real, and people take advantage.

And we’ve never, ever wanted to be a burden to anyone in our circle. But I think, too, you know, my biggest frustration is even though I have my license back, it’s [01:18:00] hard still for me to drive myself to rehab, which is … One of them is 45 minutes from my house, because it’s free. ‘Cause again, insurance doesn’t pay for it anymore So it’s a huge blessing it’s there, but it’s 45 minutes, so it’s an hour and a half round trip, then an hour of rehab.

I mean, as it is, I get home from rehab and I’m tired just by sitting in the car. So then add a hour and a half round trip of driving. Like, I’ve had so many … Family members are blunt. But, you know, I’ve had so many family members be like, “Well, why can’t Cathy drive herself to rehab?” And it’s like, I don’t need you to understand why I can’t do it, but when I ask, I need you to do your best ability and not tell me, like, “Oh, I have to tile my bathroom floor.”

Well, and it’s hard ’cause this is an invisible disability for you. Oh, yeah. Like, when I met you at the conference, you went up, you presented. We sat and we [01:19:00] chatted. You were so well-spoken. You look great. That was a different snapshot than hanging out for the next few days at Disney and seeing the fatigue.

Oh, yes. Um- The fatigue is so hard … I don’t think we appreciate the chronic fatigue that comes with losing so much muscle mass, but also the mitochondrial damage, nerve damage, everything that you’ve gone through. And now so many years later, you still can’t … Like, I, I would liken it to, this doesn’t even capture it, but, like, first trimester of pregnancy.

I feel like it’s like limbs nailed to the ground. I cannot get up. I’m like, oh, my gosh, it’s … People live like this. I had no idea, but that’s like your every day. No, I would do a first trimester pregnancy for the rest of my life compared to where I am now. Like, it doesn’t even, not to offend you, but it doesn’t even- Mm

remotely encompass what my life is like. I think what Kali’s saying is in the first trimester of [01:20:00] pregnancy, no one knows. You’re not telling people that you’re pregnant. Oh, did I misunderstand? Yeah, I think you- No. Well, it’s, it’s like you look fine. You, yeah. But yes, like, inside you’re like- You, yeah … I’m not myself.

You’re like, this is terrible. I’m mostly dead. I cannot function. And I still know that that’s nothing compared to the level of fatigue and- Pain … not being yourself- Yeah … as you experience now. Pain, too And, and just something that no one else can see. Yeah. And no one can see the pain, you know? And I try to tell people, like, just ’cause I have a smile on my face does not mean I’m not in pain.

Mm. So many chronic illness survivors and sufferers, some days I’m a survivor, some days I’m a sufferer. Do that. They mask. They try… W- like, we’ll use allergies as an example. Someone has allergies and they have an allergy attack, they might be laid up on the couch and call into work and re- like, “Oh my gosh, this is awful.”

But to a chronic illness survivor, like, that’s a good day. [01:21:00] Mm-hmm. Like, if you kind of relate the symptoms. Because, like for a chronic illness survivor, my bad day is having to go to the ER three times in one week, and granted that’s the worst flareup I’ve ever had. People will say, like, they’ll catch a virus like sh- strep, which strep is not a walk in the park.

I don’t wanna like minimize strep. But they’ll catch strep and they’ll say, “Oh, I feel like crud.” And it’s like, well, did you have to go to the ER three times in one week? And I don’t wanna try and minimize other people’s experience ’cause their experience is their experience, but it’s just like sometimes I feel as though we need to get out of our own stuff and like l- really, really and truly open our eyes.

It’s not what it looks like from the outside. It’s like, “Wow, you’re amazing. You survived,” which is amazing. You were so, so sick. You can walk. You know, you walk on the stage, you walk off, but then you walk into a wheelchair. Yeah. Yeah. Like, th- you use your wheelchair quite a bit because [01:22:00] it’s so draining and fatiguing.

You can’t just like pick up your kids and run around with them. Those things are very real, but don- you can’t see it from the outside. Or just how exhausting it is to, to drive. So the, the limitations are so real, but they’re also invisible, invisible to the outside and invisible to the government and invisible to your care providers- Yeah.

Many of my- For the most part, right? … care providers think I’m fine, and I’m like, “Okay, I’m not seeing you anymore,” and I go on to the next. And it took a solid four years for me to get a team, and I’m like, “Dear God, please don’t ever take us out of Orlando.” ‘Cause it’s just like I finally have a care team. I mean, even just a couple months ago I switched cardiologists ’cause I didn’t feel like I was getting the proper care.

It’s just so exhausting. And Eli- Yeah … do you feel like you have post-ICU syndrome for families? I don’t think I’ve heard that term before. I haven’t. He definitely does. I’ve heard it, and yes, Eli does, I mean- I think so too. Yeah, it’s, uh- He’s [01:23:00] so tired. He’s so, so tired. I think what I was saying earlier when I was saying that, you know, there was so much support at first, I mean, everyone wanted to be the first one to bring us a meal.

Yeah. Yeah. I had 100 people offer me to bring me a meal the first night we were home. But two months later, well, no one wants to bring us a meal. Because it’s not so obvious anymore. It’s like- Yeah … I, I… Well, we don’t have any concept of recovery. When does it happen? How does it happen? So it’s like you’re home, you stayed out of the hospital, you are recovered is the perception.

But it’s like, I can only imagine caring for a baby, one baby, and a newly, like, discharged wife. That’s gotta be like having two sets of triplets. I’m just trying to even liken. The mental load, the physical load, the sleeplessness, and that over time, like the sleeplessness in the ICU, the trauma you went through, the cognitive demand of that, now the physical demand of caring for them afterwards, that takes a toll over time, and that is a chronic condition, and [01:24:00] that is an actual diagnosis.

PICTS, post-ICU syndrome for families. That is real. And so the fact that you’ve never heard that, like you’ve never had the validation of saying, “Eli, you are also a survivor. You took a huge hit to your soul, to your body. What you continue to go through is a chronic condition.” You, like many families, don’t ever get that validation, let alone support- Yeah

’cause you look so good from the outside. ‘Cause I’ve met you guys, you guys are incredible, and I marvel, even with my limited insight to the realities that you face, I still marvel, and I know that I don’t even have a glimmer of the reality of what you go through. But we think the box is checked because you’re not in the hospital, because you survived that incident, because you’re back to work, Eli.

But it, it’s just a daily fight to survive. Wow. And that goes unseen because we don’t talk about it enough. It’s like you’re not supposed to talk about it because you should just be grateful that Kathy survived. Oh, yeah. Yeah. Well, and even going back to [01:25:00] work, six years later, I still have never returned to work the way I worked prior to Chloe being born.

I, I don’t think there’s been a single week where I’ve been in the office from 9:00 to 5:00 For five days straight I mean, it’s was a massive blessing that his company was willing to do that. With FMLA, we, he was able to take a sick day if I had an appointment and couldn’t find a ride. So there is that massive blessing, but it’s still like, it changes your life so much, and you so badly wanna go back.

Or I, at least I do. I don’t speak for you. Yeah. But, you know, I do. There are times, like, I do wanna go back, and Claire, my eight-year-old, has expressed that to me. “I wish I could be two again, ’cause that’s when life was perfect.” And granted, we wouldn’t have a Chloe, but, like, did we have to go through the trauma just to get to Chloe?

I mean, I got laid off earlier this year from the job I had, and [01:26:00] really my only option was to start my own consulting firm, because going into a job that is a nine to five just was not feasible. Yes, I can understand that a lot. That’s- Yeah … a lot of why I went into consulting is because caring for someone with a chronic condition is a lot.

You’ve probably written it down on paper, but when you write it down, that’s a part/full-time job depending on which appointments we’re having to catch up on. Like, there are so many specialists to go to, so much… And then on top of your kids. So I see it. I can’t say that I totally understand it, but I am so passionate about the public at large understanding this, but especially ICU clinicians- Mm-hmm

know that we can do a lot to prevent this. Your condition was very difficult, but creating a system in which families are prepared, they’re encompassed, they’re guided through [01:27:00] this process is so important, that it’ll only happen as we listen to the families and the survivors that have lived it and continue to live through it.

Any other recommendations you would give to other clinicians, even families out there? I would say if you’re a person of faith, just continue to pray. If you’re not a person of faith, I would say ex- try to explore that, as I think that’s really what has gotten us through I mean, trauma is very real for the family at large.

I mean, when my dad went through his experience, I remember feeling very traumatized and scared about what was gonna happen. And even still, nearly 10 years later, he gets re-hospitalized, I feel that panic in my gut. But I think it’s important to note as well that, I mean, I’ve heard it said before, but I just wanna reiterate, that person in the bed, you should treat like [01:28:00] you would want your mom treated or your sister or your best friend or whoever, whoever means the most to you in your life.

And not to forget the, the medical proxy. Like, was it a nurse who said, like, “You should sleep”? Something as simple as, or quote unquote as simple as sleep. Like, she really took care of Eli in that moment, and I know there were many people trying to encourage him to eat. So just… But I also wanna say, like, it’s really important to remember what you’re doing matters because you really are, like, I’ve told

I went to a conference the next month after SICMO, and my L&D nurse, the charge nurse who was there when the AFE happened, was at the conference. And I walked up to her and I said, “I’m here today because of you.” Like, because a nurse trained her team so well, and I know it wasn’t [01:29:00] just her, but the system, like, because they trained their team so well and they knew what to do, boom, boom, boom, boom.

And unfortunately, the previous patient didn’t survive, and you know, that, that’s hard to reconcile, like, why her and not me? But what you guys do really, it’s not just a job. It really does matter, and I’ve told some of my team as well, like, “You saved my life.” They’re like, “Well, I didn’t.” I’m like, “But you did Like, who knows, had you not been there, would the outcome had been the same?

You know what I mean? So that’s what I want to part with. It is amazing to consider all that goes into someone surviving. And- Yes … I think the premise of this whole podcast is that what we do on the front end of critical illness determines the back end. Managing that sedation, managing that delirium, preventing it, treating it, telling the families about it, [01:30:00] seeing that patient for who they are, seeing the families for who they are, what they’re carrying, and the long road ahead of both of them, that this is not just- Yeah

a sprint, this is a marathon. And how we manage our patients determines how much reservoir they have left in them when they go to the next phase, the next obstacle course of their journey after the ICU, that leaving the ICU is really just the start. But ordering that occupational therapy consultation, planting those seeds of therapy for after the ICU- Right

setting them up to understand the rest of the course as much as they can. It’s hard to be prepared for everything you’ve gone through, but posing a way of not just, “Okay, Kathy’s got a pulse. Our job is done. Pat ourselves on the back,” but it’s rather, did we set them up to be able to have the strength, the resources, the system, the support to continue the long recovery ahead and the life changes.

I [01:31:00] think that palliative care should be consulted for far more than just death. Again, I think of them as chronic condition doulas. Mm. So having palliative come, even if it’s not just to talk about end of life, but to talk about, “Hey, you’re having a huge life change”- Yeah … that should be considered. And we need to see critical illness like a new start of a chronic illness potentially, right?

Yeah. So I just really appreciate you guys being vulnerable here. We are setting these patients up for a new life. They’re not going home to their old life. No, no. The reality is anytime you walk in to have a baby, you’re leaving your old life behind. And then add an amniotic fluid embolism on top of that.

Any, any critical lifelong illness- Yeah … it’s changing your life. Oh, for sure. And we did not understand that at all. You described to me, you said, “I survived the ICU, but so much of me died in the ICU.” Oh, ab- absolutely. [01:32:00] Even something as simple as cantering a horse, you know, something that I took for granted so many times, or driving.

You don’t even realize you’re doing about 20 things all at once, and I had to relearn every single one. I mean, definitely when I first woke up, it was shocking. It was good to see Eli, but it was scary, and there’s all of this information coming at me, but I didn’t even try to understand what the next half a decade would look like.

And it was too much to be able to comprehend at that time. I think, like, had I not had ICU delirium, would it have been easier to accept the disability sooner, or would it have changed the disability, the way the disability presented? I don’t think we’ll ever know. I know my chest was open for several days, so you know, obviously they’re gonna wanna sedate me, [01:33:00] so I don’t think we’ll ever know, unfortunately.

But stories like yours, testimonials like yours helps us refine our perspective and our approach in the ICU to be not just about survival, but setting patients and families up to live again, and I’m so grateful for everything that you’ve done and want to invite everyone to check out Kathy’s podcast.

Tell us about it. It’s called Birth Trauma Stories, and I started it in 2022, and I really just wanted to support the perinatal trauma community. And we, I say “we” because a therapist has joined my team, and we’re gonna be hosting a retreat in the spring, a virtual retreat. I just want it to be a sounding board, a safe place to land because so often in the perinatal world, our stories are minimized or diminished or we’re told, “Well, I don’t wanna hear.

Your story is too much,” or, “It’s too scary,” or, “It’s too hard.” And granted, don’t listen to my podcast if you are pregnant. [01:34:00] Do not do that to yourself unless you are, like, a very logical person. But I reiterate, just because I had an AFE and that’s my story does not mean that’s gonna happen to you. And so when…

unfortunately, when perinatal trauma happens, and it doesn’t have to just be physical, it can be clinician dismissal, like the ER doctor that I mentioned, like, that happens all the time in labor and delivery. When that happens, I wanna be that safe s- that safe spot, that safe place to land and be able to just be that sounding board for people.

No, I love that we’re having more resources available to survivors, and so I think ICU clinicians have an opportunity to find those resources. I need to include yours as well to say, “Hey, you have this condition. This may help. Families, here’s another survivor podcast.” Invite survivors to continue to speak out, make those [01:35:00] voices known so that more families like yours can know that you are not alone.

Yeah. This has been way too lonely of a journey. Thank you so much. Thank you.

To schedule a consultation for your ICU as well as find supportive resources such as the free ebook, case studies, episode, citations, and transcripts, please check out the website.

Transcribed by https://otter.ai

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