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Episode Transcription

Kali Dayton 0:35
Okay, it’s time to bring it all back to the real reason for transitioning to an “Awake and Walking ICU”, which is for our patients and our survivors. Today, we’re gonna hear from Amber as she shares her traumatic journey throughout critical illness and mechanical ventilation after suffering pregnancy complications. Amber, thanks for coming on the podcast. Tell us about yourself.

Amber Latsch 0:56
Yeah, so I am a mom of three boys. And I’m also a certified nurse midwife. And almost four years ago now, I can’t even believe that when I had my twins, I got very sick with a complication of pregnancy called acute fatty liver pregnancy and ended up in the ICU for seven days. And six of those days I was intubated and sedated and then spent another week inpatient before I was discharged. And so, being from being a nurse midwife, I do OB things, obviously, that’s my job. But ICU is like the furthest thing from what I know. And so it was very odd to kind of come to terms with my what what my experiences are and what I know about labor and birth. And then what happened with the twins.

Kali Dayton 1:44
You ended up in the wrong it out in the wrong floor.

Amber Latsch 1:46
Yes. Like, this is not I don’t belong here. These aren’t my people.

Kali Dayton 1:51
That’s how I felt when I go on to give birth. Yeah, no, I’m in the hospital. This is all foreign. Yeah, yeah. Absolutely. And what was it like to be intubated?

Amber Latsch 2:02
Yeah. So it’s been very interesting. Looking back now that, obviously, my cognition is back to normal. But initially, I couldn’t get my head around how sick I had been. And I was still, when I woke up, you know, when I was weaned off sedation and excavated, I couldn’t separate. Like, it just felt like one continuous timeline and experience I couldn’t really separate, like what was real. What had happened when I was intubated, versus right now, when I was awakened, actually talking, it felt like I had been talking all along.

And I felt like I was had been there all along. So when I saw a picture that somebody made me like a little digital journal of what had happened to me in the ICU, which I love, love having that. And there was a picture of me in there intubated, and I just started bawling. Like, and I said, I didn’t realize that I was intubated. I thought I was just up there, you know, talking to you guys. And no one was listening to me. So that was very jarring. Because my experience wasn’t like, taking a nap and waking up, right. It was like, I spent seven days wide awake, thinking that all these things were happening that some of them were and some of them were obviously not. And so that’s been very strange to reflect on.

Kali Dayton 3:20
Is that traumatic to have that kind of disconnect?

Amber Latsch 3:25
Yeah. So at first, it made me feel really crazy. And I felt so frustrated, because the things that I you know, having been previously a healthy, you know, 20 something year old at the time, I had never had hallucinations, you know, auditory and visual, visual hallucinations. And holy cow, are they so real. And so I was just so angry, I was really angry. At the beginning, I was angry that I felt like my husband in my, my doctors, and my friends and family, like people who I loved and trusted, had betrayed me, because I thought that they did all these horrible things to me.

And I remember at one point, thinking that I was saying this, but I was intubated at the time, I figured out but like, saying to my husband, like, “I thought you loved me, like, why would you do this to me, If you love me!” like, and I mean, I had to go to therapy and like, try to kind of like, of course, he loves me, though, you know, of course, he was there at the bedside, being just the most amazing supportive partner but from what I thought he was doing, which was basically trying to get me to lay still and try to catch doctors that are harvesting organs, and were like, secret spy.

And basically, I’m the bait and so I’m like, I can’t believe you would use me as bait like, you know, like that I can be really anxious. Like, you have to know how scary this is for me. What if they actually do take my organs and gets up? So I thought that he had done all this to me. And even when I knew that it wasn’t real, it was so hard to shake that feeling that like, at the time, it’s, it’s it seemed very real and so, so strange to try to reconnect to normal life and normal relationships from the ones that I’m like, I don’t know where you guys were, but we went through a lot of

Kali Dayton 5:15
oh, they through with their own trauma, I am sure it was stressful, but it’s nothing compared to what you thought was happening. Yeah. You know, you wake up from a dream. And a few hours later, you have a little flashback to that dream, but it doesn’t feel like a dream, it feels like it’s a reality. And to remind yourself, it was just a dream.

Amber Latsch 5:34
Sort of, but I feel like when I think about dreams, they seem more like distant and like, there’s more things about them. That seemed like an imaginary place where the it couldn’t really be real, or, you know, I guess like, it doesn’t have the full scenery that my memories do from from the ICU, where it feels very much like, I was living it with my own eyes and ears and body and I could smell things and see things and hear things and it so it feels different than a dream. It feels so much more real and detailed and like not fuzzy at all.

I mean, the the timing of it feels weird because it feels so continuous. And it’s hard to tell like when one hallucination stopped, and another one started or how I jumped between them. But it feels just so much more concrete, and especially having woken up in that room. And then I later went back to the ICU, just to take care not to take care but to assist with an obstetric patient up there. And it was so weird walking in the room, because it was like, Yes, this is the room like I remember this counter. I remembers where these outlets were like, all these things that I shouldn’t really be able to remember right. But it was like, I knew that that was there.

Kali Dayton 6:58
Was it triggering? Did you…. some survivors, when they get triggered, they get pulled back into those…. I don’t even like to call them “hallucinations”, I call them experiences. Did you get back into those scenarios?

Amber Latsch 7:08
Thankfully, I didn’t because I was just so focused on that patient and what was happening with her. But it was later like when I got back to my call room that I just cried. And I just thought about like, “oh my gosh, I can’t believe….” I think that’s when I first really….. I knew that I had known things were happening and that I that like my my experiences were real, but also false at the same time. But I think that was the first time I realized how, how much of them was real and that I felt a little bit validated. Like I wasn’t crazy, I knew that I was seeing this or that the window was here and the door was here. And there was a chair here. Like it all just kind of made sense. Just seeing the room. Like as a normal person just looking at us.

Kali Dayton 7:56
And on your social media on your Instagram, you share some really intimate details about what was occurring during those hallucinations and scenarios, if you’re able. And again, there’s no pressure to share anything that’s beyond your comfort zone. But what did you experience as a new mom?

Amber Latsch 8:13
Yeah. So there was an interesting shift that happened, there was a portion of my experience where I didn’t realize that I’d had the babies. And then there was sort of like a secondary portion where I knew that the babies were out there. And I thought that someone had taken them away from me. And I I think that what happened was that that shift happened when they brought my babies up from the NICU and they put them on my chest when I was in the ICU, which I’m so like, I don’t mean to make it seem like I wish they hadn’t done that. I’m so glad they did that.

Because I think it also gave me like a fight and a drive like, “I need you to get my babies!!” – but and it was just really nice to have those pictures because I’ve missed the whole first, you know, eight days of their lives. And so to be able to feel like I was at least sort of there for that, you know, it just was really special to have that. But I thought I remember thinking that someone had had brought my babies into my room, which is true, they did and then had stood at the foot of my bed and told me how the you know, after the babies came out, and they went to the NICU because I was up here. They didn’t think they were mine.

Because if they were mine I would be down there. And that I couldn’t prove to them that they were my babies that I had grown these twins and so since I couldn’t prove that they remind they were going to give them to a different couple and like this couple some imaginary couple was there and they were like we’ll take your babies we’re going to take good care of them. And it was probably the ICU nurses right saying to be like taking care of your babies like things but to me I was like like no those are my babies like don’t take them away and like I know their mind like I don’t need to prove that their mind like I have been pregnant for knows Do we and, and I remember feeling so frustrated because my husband was there and being like,”Garrett!! Those are our babies. Yeah, like tackle these people like that do not let them take our babies.”

And so I, and then the other recurring experience that I had another thing, but it’s such a it’s a weird conflicted feeling, because I’m so grateful that everyone did the things that they did. But they just kind of altered the course of my experience. So one of the things the nurses were doing, so kindly was pumping me. And so the labor and delivery nurses had like a schedule of like, who would come up every four hours, somebody was pumping, because they knew how much I would want to breastfeed.

And I’m like, what a kind, like above and beyond things for them to do. And I did I breastfed for a whole year, and it was so great. So I’m like, thank you for doing that. But at the time, I remember thinking that there were these like, milk factory workers, and they were trying to extract my breast milk, to give it to other babies. And they would tell me, “Well, if there’s enough leftover, then maybe your babies can have some. But we need to, we need to sell this and we’re going to, you know, give it to whatever, all these other babies.”

And I remember, you know, thinking that I was at the top of a waterslide. There were two water slides and like, which is probably my right and left side, maybe. And I was thinking that like one waterslide is to the babies and one waterslide is to the factory. And the factory kept saying, “Well, we just need to take more and more and the factories getting bored, your babies don’t get any.” So like, what a strange thing to think is happening.

Kali Dayton 11:44
What did you feel in that scenario?

Amber Latsch 11:47
I was so angry. And again, I thought I was talking to people so I was you know, trying to say like, “You can’t do this. This is my milk. This is for my babies. Like I don’t want to be a part of your factory like, like, let me out of this weird prison that I’m in.”

Kali Dayton 12:05
So stressful! I mean, just it just what like Larium preying on motherly instincts.

Amber Latsch 12:11
Yeah, yeah.

Kali Dayton 12:12
Could there be a more dynamic combo? Right?

Amber Latsch 12:17
Yeah. So yeah. So that was sort of the, the motherhood related ones that I had a lot was that you know so much with my babies, and now they’re taking my milk. And then, you know, I had a lot of, of experiences that focused on what were probably just routine cares in the ICU, right? Like being turned. And I’m, I don’t know this to be true, right? Because of course, I don’t like have timestamps. But I’m just sort of associating like, “Okay, if I thought my body was doing this, that’s probably what was going on.”

But I remember thinking I had to, like, hold on to this spinning thing. And they were lifting us in a crane in the air, and people were shooting at us. And I like, I was being like, you know, just turn in all these weird ways, and like trying to avoid gunshots. At one point, I had a hallucination that somebody had like a vacuum hose. And they were trying to, like, get information out of me. And if I wouldn’t talk, they were gonna stick it in my throat and like, suck all my air out. And so I remember thinking that was being put in my mouth. Yeah. And I was like, they’re taking my air like, “Okay, I’ll talk but like, but I don’t have anything to say.” And so it was just scary. Yes. Yeah. I was like, “Please don’t suffocate me, or don’t take my air out.”

And so it makes sense, right? You’re like, oh, they were probably suctioning me or doing some sort of care with my, my tubes. And then you know, I would have I had a lot of ones that were probably related to the I am sedatives that I was getting. So I felt that I was getting injections in my legs. And my husband’s like, yes, they were giving you like, there were these I am, I don’t know, something that I was getting. And I remember thinking like, my husband, this is where “he’s, you know, exploiting me as like the bait. And so we’re trying to catch the doctors that want to give me the poison to kill me.”

And then “If we wait too long for them to leave before the good person can give me the anecdote, I’m going to die.” And so I remember like feeling the shot going into my leg and then being like, Okay, I have to pretend to be dead, because that’s what will make them go away. And then the good person will come in and give you the anecdote. And I remember thinking, like, too intelligent trying to tell Garrett like, “Hard to like, hurry, like, I’m, I feel myself going, like, I feel like I’m like, they would give it to me and I would feel like I’m gonna, like pass out or I just, I don’t like something feels weird. Now!” It’s like, “You need to give me the anecdote quick!” like, so. I don’t know, there were just all these really weird things that you know, kind of align with, like physically, like actual inputs that were happening, but And of course, the story that I imagined around them was far more elaborate and distressing than anything that was actually happening.

Kali Dayton 15:08
And were you just sedated? Because you were intubated?

Amber Latsch 15:12
Yes. So I did I had to clarify this with my husband, because I was obviously not really there part of it. Yeah. So he said that for about six hours before I actually got intubated, I was just, I was just unresponsive at that point. So I wasn’t awake at that point anyways, but then, you know, I was the sedation was maintained, because I was intubated. And then I, you know, he said, they would try to wean it and see if I can maybe be extubated, but I would get very, like aggressive trying to pull out my central line trying to pull up my tubes. And so I was, you know, restrained. And I remember that I remember thinking I was tied to a bed. And that, you know, again, I couldn’t leave. Yeah. And I remember thinking, like, I can’t talk, I have to be quiet and pretend and play along, so that they won’t know that I’m like, a double agent.

Kali Dayton 16:10
That you can laugh about it now.

Amber Latsch 16:11
I can, I can, because I think it helps that I, you know, I’m young and I recovered. So, like, so rapidly, you know, considering what so many people go through after critical illness. So for me to be like back to my baseline within a few months is awesome, right? And so I feel like I can, it helped me mentally that I physically healed so quickly. And I could kind of just look back and be like, Wow, what a crazy ride that was.

Kali Dayton 16:44
And that’s, of course, a lot of the research that shows that the psychological well being is closely intertwined with their physical well being. So when people come out, validated, they psychologically suffer higher rates of depression, anxiety, PTSD, things like that, for I’m sure, lots of reasons, but that, that makes sense. Yeah. And how long were you going through this process of trying to when you came agitated, and then they resumed sedation?

Amber Latsch 17:10
Yeah. So it sounds like maybe two or three days. And then there was one full day that I was extubated, but was just kind of slow to come around. And then apparently, I mean, that’s little that’s obvious. That’s fascinating. I see you, but you know, I wasn’t yourself yet. Yeah, I wasn’t myself. And I wasn’t really it wasn’t speaking anything coherent. I was just kind of like moaning and mumbling. And then the first thing that they that I did say was, I was saying, “Where’s Garrett? Where’s Garrett?” which is my husband, to the nurse. And so my husband is like, “That was the best phone call I ever got, like, at three in the morning that you were awake. And you were asking for me.” And I was asking for themselves mad. I was like, “Where did he go? Like, he needs to get me out of there. He left me to get harvested.”

Kali Dayton 17:57
So scary.

Amber Latsch 17:59
Yeah.

Kali Dayton 18:00
Yeah. And that, that just makes me wonder how much sooner because you have been extubated? Obviously, you had a lot going on. Yeah, prior to intubation. But what point is it go from encephalopathy from the fatty liver to then delirium from sedation? If if there could have been at least a few days of like, mechanical ventilation, would that have changed things? I mean, we talked about like workload for nurses. That’s just another couple of extra days to be on the ventilator to be in the ICU, you took a day to still be in delirium, still be in hypoactive delirium, it sounds like.

It just adds to the whole big picture and even just more trauma, longer in the hospital, you’re away from your babies for longer. Yeah, because of that. And you said it took a few months to really recover. What was that like?

Amber Latsch 19:36
Yeah, so I feel like my physical recovery was the fastest part. Like, every day I like, “Okay, this day I was able to stand up” the next day, I could stand and use the walker to the bathroom. The next day, I could walk around the room with a walker and it so it seemed, really, I felt really awesome. Like, yes, look at me go like, “Alright, now I’m walking in the halls, like I’m getting the heck out of here.” And so that part felt like, I mean, it was frustrating for sure. Again, being a young, healthy person, and then needing someone to teach you how to stand up. I was just like, “Excuse me, watch this.” Then I’m like, “Oh, yeah,”.

The same with like eating, I couldn’t figure out how to make a spoon get to my mouth, like I’m hitting myself in the face of spilling over myself. So that was very weird. Like, I’m just like, “Why doesn’t my body work? This is so frustrating.” But the longest part was just cognitively. So it probably took me three or four months to feel like I could think normally again, I had a lot of just lingering memory loss and confusion.

So for example, when I got home, I remember thinking like, “Okay, I’m gonna get a glass of water.” And I just stood in my kitchen, like, “I don’t know, where my cups are, like, I don’t know where things are in my own kitchen.” And that’s so odd. Because, you know, it wasn’t I was only in the hospital for two weeks, but there was just so much deficit between things that are, like, obvious for me.

And same with driving. Like, I felt really hesitant about driving, because I felt like, “Okay, what do I do?” To be able to do that? Because it just, it felt confusing, which is, yeah, again, very frustrating for a young person to feel like, “Why can’t I find the words that I want to use?” And I just felt so much compassion for like, my grandparents and, you know, people that I’ve cared for, like, back when I did med surg, where you’re like, Man, I used to take care of a lot of stroke patients. And, you know, it just felt like, Oh, my God, no wonder they’re so angry all the time. Like, you know, it just like, mad at us as staff. Like, it is so frustrating. You’re like, I’m trying to say something. And I don’t know how to say it. You guys don’t understand what I’m trying to say.

Kali Dayton 22:16
I know, I should be able to….

Amber Latsch 22:18
Yes, yeah. Or you’re like, I know, I should know this. Like, why don’t I know this? And I remember feeling really scared. Because then, you know, the babies were going to be coming home. They were there for a month. And I remember feeling really scared. Like, “Can I be alone with them? Like, am I going to forget to do something? Am I going to forget to go to them? Am I going to leave them in the car? Like can I take them to appointments?” I was just so scared that I wasn’t like, good enough to take care of my own babies. And, and my husband expressed the same thing. He was like, you know,

“I think we should have people with you with them.” And, and I agree, but at the same time, it made me angry. Like, even though I know you guys are right, and I don’t trust myself. I also just wanted to fight back and be like, “Excuse me, I could take care of my own babies. Like, you don’t have to babysit me.” I don’t know, it was just a weird, conflicting feeling.

Kali Dayton 23:11
Yeah. Now to imagine is the birth of your children, right? Yeah. No, not at all. And have you did you know that you had ICU? Delirium? Did anyone explain that to you?

Amber Latsch 23:21
So I remember thinking so you know, I, like in nursing school, you learn about ICU delirium. And I remember saying that to people when I when I got to the post-paryum floor afterwards, I was like, “I know, I’m just having ICU delirium. I know that that’s what this is, like, I know, that’s why I’m hallucinating and having all this.”

Yeah. So I remember telling nurses and my husband and family that I knew I was having experiences of ICU delirium, and that that’s why I was hallucinating. And that’s why I like I was starting to come around to this weird reality of like, “Okay, I know that I’m seeing things that aren’t really there. But also, maybe people are just lying to me…” you know, trying to come to terms with that. Yeah, so I think it was helpful that I knew of ICU delirium, and I was cognitively able to make that connection, like, “Oh, this is what’s happening”

And I think, you know, at first, especially, like, some of my, some of the feedback that I got from providers or family was like, No, you don’t this is just because of, you know, your high ammonia levels from acute fatty liver. Like, “You don’t have ICU delirium, like you’re too young for that. Like, that’s something that old people get, or you weren’t there long enough.” you know, and I was kind of like, “No, I really do like, I can’t sleep I can’t..” you know, like, I just felt so disoriented by time and just everything and then looking back I’m like, “No, I definitely did.” like yes, I I’m sure I still had some mental status changes related maybe to ammonia levels still coming down. But it just seemed like so much more than, like a little bit of confusion. Like everything was just totally turned upside down.

Kali Dayton 25:15
Wow. And the assumption that you’d be too young or too healthy. That just exposes a lack of understanding that we have for what sedation actually does to the brain. And yes, there are risk factors. Age is one of them that make people at higher risk. But anyone that is deprived of a REM cycle for even just a few days, yeah, high risk of developing delirium.

Amber Latsch 25:37
Yeah. And I remember feeling really, like, embarrassed when the first day that I was awake and talking in the ICU, which I think I was only there for a full 24 hours, maybe. But that was actually the case before I was just like, moved. But I remember the neurology team coming in to do their evaluation. And they asked me, you know, can you count from one to 10? And I couldn’t, and I was so just like, “Oh, my God, this is so embarrassing. Like, I know that I can do this. Like, I just needed, like, maybe a little hand..”, but I remember them asking me, “Do you know what, what day it is?” And now I kind of feel like, again, not. That’s a fair thing for them to ask. But I also feel kind of frustrated, like, “Man, I really felt like they made me feel stupid about that. But like, I’ve been intubated. I don’t know how long.”

Yeah, like, I really don’t know. Like, I have no concept of that. Like, that’s not something. So, you know, I remember feeling so stupid when I was like, it was July. And I said “Is it may? And then I’m like, is it fall now? Is it is it October? Like, I don’t know, how long have I been here?” And they didn’t really, you know, answer me. They were just like, “No, no…” you know, and I was kind of like, they said, like, “It’s July blah, blah, blah”. I’m like, “Okay, cool. You could have just told me that I got it. Now. I’m gonna remember it’s July. I just like no one had talked to me yet.” So I told my husband, I was like, “I feel like I should have studied for that test. Like, I should have got some answers from you.”

Kali Dayton 27:09
I mean, I feel like I would be really panicked to to be lost in time. We’re not know what month it is.

Amber Latsch 27:16
Yes. And you’re like in that feeling? Like, I know that there was some sort of break in time. And I don’t know how long that was. Like, “I don’t know how long I’ve been here doing this.” Because it didn’t feel…. it felt like one continuous just awake experience. Like I didn’t…

Kali Dayton 27:32
It was. You probably…. if you were sedated, you probably weren’t getting sleep.

Amber Latsch 27:37
Yeah, I waas just frustrated. Like when I went to the postpartum floor, and everyone’s like, “Amber, you need to sleep you need to sleep, you know?” And kind of like, not, but sort of scolding me like, “Why are you awake, you need to sleep.” Like, I would love to my brain is just like, I’ve never felt more awake in my life. Like I if I close my eyes, it’s just constant thoughts. And the, you know, hallucinations just be even more intense. And then I’m just like, “Well, now I need to open my eyes and see like, is there a car in here?” And like, I think it’s just, yeah, it was crazy. So I think it took me another two days before I actually was able to sleep sleep. And everyone just kept telling me like, “You need sleep to get better. You need sleep to get better.” Like, “Yeah, cool.”

Kali Dayton 28:22
said, yeah, yeah, I think we’ve all experienced when we come home from a shift or just from being awake for 24 hours, and we think that we’re going to pass out the second we get home, but then we don’t. We’re in this mindless zombie land, or hard to fall asleep. So that’s, that’s what I can relate to, at least as you’re just in between worlds, but to hold if an extreme in your case. Have you talked to other ICU survivors? Do you feel like you can relate to them?

Amber Latsch 28:55
I haven’t talked to them. I have listened to a lot of your podcasts and it makes me feel so validated. Like, “oh, my, okay, like other people had the same, like very similar experiences and very similar, you know, like interpretations of what was happening to them.” And it made me it made me feel so validated, like, “Okay, I thought my brain just really went off the rails. But turns out other people’s brains also react to this way.” And so, yeah, I mean, I haven’t, like I said, I haven’t talked to anyone. So I don’t really knowb anyone personally, who’s been through anything like this. Again, being young, right? Like, my friends haven’t been in an ICU. So yeah, I felt like your podcast has been super helpful to hear other survivors and helped me feel like I can connect to that.

Kali Dayton 29:45
Good and that’s, you know, talking to so many people. I’m relieved for you that you’re back to work working as a midwife and live your fullest and you will take care of your family and be the mom that you want to be. Really because that’s often not the case. Yeah. Oh, no. Survivors have 120 times greater risk of having long term cognitive impairments.

Amber Latsch 30:07
Yeah. And, you know, I, that was one of the things that I was really scared about in those first few months was feeling like, I’m not going to be able to be sharp and be a midwife like, I need to be able. And especially after this experience, I felt, not that I didn’t feel responsible for patients before I certainly did. But this just really hit home like, “Wow, I’m a mom that almost didn’t go home to my family and almost had a funeral instead.” And to think about, I never, you know, that never felt very tangible to me as a provider before.

And so then I just felt like, well, now I need to be the best I’ve ever been, like, I need to really, like take the absolute best care of all these moms. And I can’t do that if I feel like I can’t make connections that I can’t, like, detect, you know, subtle changes and things anymore. And so I was really worried that I wouldn’t get to go back to doing this work. And so I was so glad when the fog lifted after a few months, and I took six months off work, which was I think, really important. And I felt good going back to work like no, I feel confident that like I’m even better than before, because I have this happen to me.

Kali Dayton 31:21
Right? Like, what a maturing experience.

Amber Latsch 31:24
Yeah, yes, it was very eye opening. Yeah.

Kali Dayton 31:27
And I see you on social media, I see what some of the things that you’re doing share with us what you’ve now dedicated yourself to.

Amber Latsch 31:34
Yeah, so when I went into the six, when I woke up from this experience, I really, I hadn’t known a lot about acute fatty liver of pregnancy, it’s really a rare pregnancy complication. And it’s something that the outcomes are really closely linked to it being diagnosed appropriately and then managed, like aggressively. And so I felt like, Wow, I can’t believe I didn’t know more about this, I feel like if a patient had come to me with the symptoms I was having, I would have kind of been like, you know, these sound like some pretty normal pregnancy, things like, I would have probably brushed it off, at least initially, until you know, I got really sick.

And that’s what I was doing to myself and my head, right, like I was just, you know, by so now I really, and then I went to like, find things about this afterwards, I’ve become like ravenous wanting to research acute fatty liver, and they’re just, there’s not a lot and there’s definitely not a lot from people that have experienced it. And so there is a Facebook group of acute fatty liver pregnancy survivors, that’s like a international group. And it’s been so awesome to connect with these other women that have gone through this.

And so now I’ve been trying to use Instagram, it’s kind of like a combination of just for me, like not for anyone else just to kind of, like reflect on things that happened. And you know, sort of, again, like a little journal right of some of the stuff that I experienced, but also to try and just put content out there about acute fatty liver pregnancy, with the hopes that nurses and midwives and physicians, you know, that take care of these patients, or patients themselves can start to feel more equipped to recognize this, because it’s so rare. And so that’s what I’ve been trying to do is just kind of put little things out there.

And I feel like I don’t do a lot not super active on it. Because you know, I work full time and I’ve 3 kids, but I try to like put things out there when I can and you know, do I’ve done a few, you know, interviews and things just related to acute fatty liver. And so trying to just get more information out there for people because so that hopefully people don’t have to go through what I went through. Or if they do at least, you know, they, maybe the everyone feels a little more prepared or like what to do.

Kali Dayton 33:51
Yeah, and your voice is so powerful for a community that believes that sedation asleep, that, you know, looking at you that you were probably blissfully unaware of what was going on in the ICU place. And that was mostly mean, and that’s deeply ingrained into our culture. And some patients don’t have experiences. Sometimes they are agreeable if they were sedated. But so often, it almost seems like more often than not what they experienced was likely worse than the ICU and you bring in such a powerful example of that. What else would you share with the ICU community when it comes to sedated patients?

Amber Latsch 34:22
Yeah, so I mean, I would say, prior to this happening, well, I’d never even heard of this. So I’m so excited when I found your podcast. I’m like, What is this? Like? Oh my gosh, this is a whole new world. Again, ICU isn’t at all my specialty, so I don’t really there’s a lot of things I haven’t heard. I thought you know, prior to going into this, I had always thought like, “Man, if I have to be intubated. Yeah, I want to be like so sedated. I have a terrible gag reflex. Like that freaks me out to think about having a tube in my throat like, brah, I don’t want to have any experience of that.”

But then it came to the reality and I was like, “Oh, I had the experience of that and so that plus a million other really terrible things that were so much scarier.” And so I think, you know, obviously, everybody in healthcare really goes into it because you want to help people, and especially in the ICU, right, you’re like, I’m just like, kind of catching babies that are going to fall out anyways, like, the ICU are like literally saving people and like impacting their whole life course of like, what is this person going to be able to do if they survive this? And so I think it is so worth like, re looking at the way we do things, right to just be able to give people like you’re not hurting people by not sedating them, like, it’s so scary, being sedated. And it still I had pain, like it hurt things hurts. And, you know, and things were just so much more twisted and dark than if someone had just said, “Hey, you have to have this tube in your throat. And sometimes we’re gonna suction it”, you know.

Kali Dayton 35:53
and to take your air because you’re not telling us the secrets.

Amber Latsch 35:56
Yes, exactly. Yeah. And to not feel like I was being punished, because that’s what I felt like, I felt like, like, “Why? Why me? Why are you guys torturing me?” And so if I could have someone could have, like, actually told me what was going on? And like, “You’re not being punished, you’re not in, you know, you’re actually at a hospital.” And to help me understand, like, what was going on? I think it would have made such a big difference.

Kali Dayton 36:19
Absolutely. And for survivors that may be listening, what would you recommend for them? You’ve done therapy? And yeah, what has been helpful to be able to mostly cognitively physically recover from this?

Amber Latsch 36:31
Yeah. So I think in terms of emotional recovery, I’ve definitely done and I think the Instagram page for me has been a part of that, for sure. But trying, I’ve wrote a lot of things down, I’ve drawn a lot of pictures of like, what I thought was happening, and where I thought things were in the room. And then are like, I’ve described things, it just helps me sometimes to just kind of talk to my husband or my sister, like people who were there with me in the ICU like, “Okay, this is what I remember. Does this make any sense to you?” And it just helps me get some meaning for them to either say, like, “No, there was nothing with that. Or yeah, there was this person, and they did this certain thing. And that actually makes a lot of sense from what you thought was going on.” And so that has helped me so much to just kind of sort out this like, jumbled puzzle in my head.

Kali Dayton 37:20
What was real and what wasn’t? Yeah, yeah. And we’ll be doing an upcoming episode on ICU diaries. So you have a powerful example of the pictures, the record that people kept for you has been helpful.

Amber Latsch 37:32
And oh, my goodness, I’m so glad. And especially being someone in the medical field, I feel like I really want like, I got my whole chart I want I read there was literally like 10,000 pages that printed off, you know, when it’s mostly just like gobbly gook flow sheet data, but just being able to like, be able to look back and get some concrete, objective information when you’ve had such a weird experience is really helpful. And I’m so glad that, that my family like took the time to write little blurbs like today, we did this.

I mean, I remember my sister wrote in one day, she said, you know, Jackson was my older child, he was four at the time, she said, you know, “Jackson’s in the waiting room with us today. He asked me if I brought my wallet, and he wanted to go to the gift shop. And she’s like, we went there and bought a bear for mommy.” And, and just like these cute little things that were happening. It’s just nice to be able to know like, oh, that’s what was happening on this day.

And yeah, so I think if family members, or a staff can encourage family members to just like, you might think this person does not want to see a picture of themselves right now. And maybe they’ll never want to look at it. And that’s totally fine. But I wish I had more pictures of like, okay, so cuz you know, when people are like, you have this open abdomen like, man, you didn’t take a picture of it. So you know, there’s just stuff that I wish I had more documentation, even though at the time, it probably seems morbid. Like, we shouldn’t be taking pictures of their swollen feet or whatever. But like, I would love to have

Kali Dayton 39:04
…and appreciate how far they’ve come how sick they were, and where they’re at now and celebrate that progress. And like you said, if they don’t want to see it, they shouldn’t have to, but it could be so helpful.

Amber Latsch 39:15
Just to be like, “We have these.” And that’s what I tell people about birth to like, when I take pictures for people or people have someone taking photos or the nurses, I’ll be like, “Just hand the nurse your camera, have them snap some pictures. You’d never have to look at it if you don’t want to.” But like nine times out of 10 those moms are like, “Oh my gosh, I’m so glad I had those pictures. I thought it would freak me out. But it’s so special.” So yeah, so it’s just one of those things where you’re like, This is an experience. It’s never gonna happen again. You can never post for these pictures. Like it’s just it’s happening and it’s gonna be done forever. So just have someone take pictures and if you don’t want to.

Kali Dayton 39:54
Oh, I just want Hey, thank you so much for your insight, and all the work you’re doing on other side. Appreciate it.

Amber Latsch 40:01
Yeah, thank you so much for chatting.

Kali Dayton 40:03
We’ll be in touch. Thanks. Bye.

 

Transcribed by https://otter.ai

 

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