Navigating the healthcare maze before tragedy strikes

0:00Well, come to the untold, take it deep breath, take the higher road, that's why they always say, as if they know the way, they won't take it from me. But don't ever doubt yourself by swiping just a drain, you made your own so kick and scream. The people will lie with a never-ending force, you never have the chance, so watch your waiting for it. This is come, my friend, cause this is one. It's time and this is one. Welcome to the nurses' report on America Outbound. I'm your host, Ashley Caputo, registered nurse, functional medicine practitioner,

1:03and someone who spent years working inside the healthcare system as both a clinician and a nurse case manager. And if there's one thing I've learned along the way, it's that navigating the healthcare system today is not easy. Between insurance denials, prior authorizations, referral barriers, and fragmented care, patients often find themselves overwhelmed and fighting battles they never expected to fight, while simply trying to get care for themselves or their loved ones. Many people assume that once you get a diagnosis, the system just automatically moves into action to help you, but that's not how it works. Sometimes patients need an advocate. Someone who understands the system knows how to push back and knows how to navigate the maze of insurance companies, hospitals, and specialists. Today's conversation is about exactly that, the power of advocacy and healthcare, because sometimes the difference between getting the care you need and falling through the cracks is simply having someone willing to speak up.

2:10Joining me today is Amy Whitlock, someone who knows firsthand what it's like to fight inside the healthcare system, and it often feels impossible to navigate. Amy's journey with her son Adam into advocacy, of course, didn't start as a career. This was personal. She became an advocate because she had to, and like many families navigating complex medical situations, Amy found herself facing roadblocks from insurance approvals to access to specialists, and quickly realized that families often have to become their own case managers. Over time, that experience turned into a deeper understanding of the healthcare system and importance of patient advocacy. Amy, along with myself, were also connected with remnant healthcare, an organization that helps patients navigate medical care and provides advocacy supports when families feel like they're running into walls. Amy, welcome to the nurses report.

3:12Thank you. So Amy, I know people probably know a little bit about you because you were on Melissa's podcast on the nurses report. So they know a little bit about your story with your son Adam, but let's, you know, for some of the listeners that maybe didn't hear that, which I would encourage you to go listen to that episode. But start a little bit just about your story with Adam. Let us know a little bit about who you are and how you got here. Oh my goodness. Adam, I know that's what it's a lot. It's a long story. It's like an onion, like you just peel so many layers and then just, you know, then the water works happen. But in a nutshell, Adam, I really believe Adam was, I don't want to say pre-curse, but I almost felt like where we were living at the time. There was just so many things going against a second-taminated whale. We were on farmland. We had, you know, bad soil.

4:14I mean, so many things. And so early on, Adam began, you know, portraying symptoms of autism. And we already had autism in the family. And sure enough, at age two, he didn't meet his milestones. He was diagnosed. And so we at the time were equated with Great Plains Laboratory. And I was doing some work for them. Advocacy work just to help other families. You know, spanning off our experience. And we were able to work and get, you know, specific labs done for Adam and the things in this kid's body was, it was frightening. Arsenic mercury. I mean, just so many, so many high levels of contaminants. It was unreal. And so, you know, we did our due diligence. And back then, we had the Dan protocol, excuse me, D-A-N. Defeat autism now. And so by the time he was 11, he was basically recovered. I know people say you can't recover autism, but with God's help, we have twice.

5:14And when I say the kids were autistic, I don't mean they just couldn't handle social interaction. I mean, they were nonverbal, biting me and kicking me, panicked at therapy. There was no language. They're, you know, they were very, very moderate to severe. And so by age 11, Adam was showing huge progress. So much so that the speech therapist was like, I don't want to code this for insurance. I don't see the autism anymore. And then shortly after that, well, let's see. No, that was in, I'm sorry, he was 14 by then. At 11, we were seeing some autoimmune issues kick in, but he was still doing good, like neurologically with autism. And then I'm in 2021, when he was 14, that's when she made that statement about, I don't want to code this. But he shortly after contracted the astro virus. And I was told at a children's hospital that it was basically eradicated that they rarely see it anymore.

6:16But given he was an immune suppressed kid, it didn't surprise them. After that, he started displaying symptoms of what I recognized then as autoimmune cephalitis. We felt through the system. They did not listen to me. And it was eight months later, they finally hospitalized him. And this was after reoccurring hospital trips, emergency room visits. He was losing weight. We were like, my charting, his symptoms are worse. Could we test him for this? They're like, it's not that mom. Well, it was. So he got his diagnosis, his official diagnosis in September of 2024. And yes, 2021 to 2024, it took us that long to get his diagnosis. Yeah, that's great. I mean, you hear that so often with parents feeling dismissed, like the nobody's listening to them. I learned, I don't know why because I know when I did my rotation in children's, like a children's hospital.

7:24I learned probably within the first 10 minutes, listen to the parents, because they would come in and say, like, this is what's going on with my child, or I'm worried something is about to go wrong. And if you dismiss it, sure enough, something goes wrong. Parents know their kids. And it's not like it wasn't our first radio. I mean, these people watched Adam physically recover from autism. And they're like, I don't know what you're doing mom, just keep doing it. And it's not like they had a reason to dismiss me. It's just, I think you get caught up in the system and they become a number. And when you frequent the hospital, it's just like, oh, they're back again. And as a matter of fact, if you don't mind telling how you and I met. Yeah. So we were advocating in 2023 for IVIG. And we got turned down by the insurance. And then January 3rd, I believe it was the exact date.

8:28You called me because you were our liaison at our insurance company. I've never met you. And literally, like we were new to you because our husband's company, my husband's company had just changed our insurance. And so January 3rd, like literally you're seeing our case. And that's what makes you the greatest advocate. And you call me and you're like, why is he not approved of what's going on? And so I told you this story. And then from there, that was January of 2024. And then you got to doing research and you found within our insurance company that there was a program called diagnostic odyssey. And anyways, you helped get us to Boston Children's Hospital. And they have a lot of studies there that our hospital did not have. And so that's, I mean, just to let your audience know that's how you and I met. And that's how, you know, this whole advocacy dream got started.

9:30Because I thought if we can do this for Adam, we can do this for more. Yeah. Yeah. And the system, I mean, I think, like I said in the intro, people assume that if you get a diagnosis and a doctor recommends a treatment that you're just able to get it. Right. And I think it's so frustrating to know, to be told, hey, there's this medication that could really be life changing. But we can't give it to you because it's not approved. And these are not cheap. IVIG is not cheap out of pocket. So it was totally an optional. We were in the immune dysregulation department in Atlanta. And like they were seeing Adam and we were running genetics. We were running. I mean, you name it. That doctor in that department is a genius. And then his assistant was just listening to our story. And it was just on a whim. I told her, I don't understand any of this. But all I know is when he gets sick, because he had COVID,

10:30he's like, when he gets sick, the neurological stuff dies down. And it didn't make sense because, you know, COVID, especially the worst thing in the world, you know, it's like a death sentence, but Adam's getting it. And neurologically, he's walking around and he's fine again. She was like, oh, my word. He needs antibodies. He needs IVIG. And it's that one statement that I thought meant nothing. It was really just a rant. I don't understand what's going on. Let me tell you what he's doing. Like it sparked her thinking. And so I encourage mothers don't discount anything. Like just tell your story. And if you've got a doctor that listens to you, it may just be like golden. And so that was in November of 2023. And we kept getting turned down. And he kept declining. And as you and I were working on the approval in March of 2024, we went to the hospital and I told them run the IVIG, run it. And so our doctor came out and she said, you know, you don't have approval.

11:31I said, I don't care at this point. We're going to lose him. So I found the paper. And, you know, I had peace about it. And I felt like if the insurance could see his improvement, they would prove it and sure enough, six weeks later, they approved a very tiny dose. And so we were able to get another tiny dose. But the hospital was, was very good. The immune dysregulation center at that time called and said, how is he doing? It's like the very next day. And I told the nurse. I said, he just walked into therapy by himself. She said, do what? I said, yes, ma'am. I said, and he talked on the way home. And you have to understand his autoimmune and cephalitis. It was like stealing him academically. His memory was gone. He even forgot who his first crush was. Like, he, like, how, how can a little boy forget his first crush? You know, there's parts of his memory that still isn't the greatest. But I mean, like, back then, I'm talking about a boy that could not walk in

12:32to the hospital, like his, his brain. Like, he was physically able to move his legs, but like his, his brain would not allow it. And we were doing everything for him. It was like having a, uh, fit seven toddler. And so when on the way home from that initial IVIG, he spoke, it was like, wow, wow. This is what we need to do. And so the hospital was blown away. And even then, finally, they sort of advocating. But it really wasn't until you got us to Boston. Children's, that the insurance was like, oh, well, they now have an official diagnosis. So let's just, yeah, let's approve this. But it took months and months and months. I mean, we went across the world trying to do this. And the world trying to get this get approved. I think, um, something that, that listeners, in case, you know, they haven't had to experience this, you know, a lot of these medications, they do have to be approved by your insurance company.

13:32And in order to get that approval, most of the time they have to be FDA approved for your diagnosis. Right. So with Adam, it was really complicated because he didn't necessarily have the diagnosis, not yet, right? Right. And so they wanted to use this medication, and it was considered off label or experimental to give him this medication and they wouldn't approve it. And that's where, you know, I get, I have mixed feelings, right? I feel like insurance companies overstep their bounds. If, if a doctor is saying someone needs a treatment or a medication, who's the insurance company to say no? On the other hand, I get that they are paying for it. And you, there is abuse in the system. So it's almost like there has to be some sort of regulation. I don't know how to fix it.

14:32Like, I've, I've racked my brain like, what could be done differently? Because if, if you just opened it up that doctors could do whatever they want, you do open it up to fraud and abuse. But at the same time, you're denying people treatment that could potentially change their life. And by the IG changed his life. I think what really gets me about his story is it was not until we got to Boston because like, they have all the studies. What bothers me the most about his story, we presented all of his testing that we finally were able to receive in Atlanta. And the doctor in Boston, she looked at me and she said, they did a good job. They didn't do anything differently than I would do. It was just eight months too late. And if they had listened to me in August, September of 2021, he would not have declined so badly.

15:33I think that's what bothered me the most about his story because I mean, they stole his childhood, you know? Yeah. So if there are providers out there listening, nurses, doctors, whoever listen to the parents, listen to mom. She knows what she's talking about. And I always, the way I approached it too is because we see this with families, you know, in the hospital. They say, well, do you think it could be this? I want to try this, you know, what's the worst that could happen if you explore it? Right. You know, the worst thing that happens is, well, you know, we didn't get anywhere. But I don't think dismissing and gaslighting people gets you anywhere. By the time our doctors at Atlanta did his lumbar puncture, because you have to catch those antibodies at just the perfect time.

16:35And since that lumbar puncture was eight months too late, there was no hardcore evidence. They were just like, no, we don't have an answer for you. And it was devastating. They had no answer as to why my high functioning child could not feed himself, could not walk to the bathroom by himself. He couldn't do anything but sit in pain and repeat mom, mom, mom. He literally got, I mean, and as a mom, to hear that constantly and to watch him in pain and you can't do anything about it, it's frightening, especially when they're telling you, you know, he's just our one and a million. We don't really have any answers. I don't have any answers for you. But they could have if they had just listened eight months earlier. And it's not that we didn't have good insurance. I have no doubt our insurance would have paid for the lumbar puncture early on. I mean, he qualified, he had so many neurological dysfunctions,

17:36he qualified for a lumbar puncture. So it wasn't our insurance wouldn't pay. At that time, it wasn't, that wasn't shoe. It's just they wouldn't listen. And that's the thing, there's, there's not just hurdles with insurance companies. I think insurance definitely gets the brunt of, you know, people's troubles. But there are hurdles within the hospital, with the providers, with hospital policies, and families become the advocate. But if you're not familiar with how the system works, you can just get swallowed by the system. And people feel frustrated and they give up, you know, because they don't know who else to turn to. They kind of just feel like there's, I can't do anything. And that's where advocacy comes in. And I've always been very passionate about it, because in nursing school, it's like nursing 101, your main job as a nurse is you are the patient's advocate.

18:39And I think that gets lost along the way when you start practicing as a nurse, because you get used to, well, these are the orders, I have to do it. Or, you know, these are the medications they're due right now. I'm sorry, you know, and you forget that you are there for the patient. You're not just there to carry out orders. And I don't think, don't give me wrong. Nurses, I don't think are, are all just robots. And we're here to push meds. But I do think that it gets a little lost, that your number one priority is advocating for that patient. They have to do what they're told. And Adam recently had a flare up and we were actually in the hospital for IVIG and had a conversation with a doctor. I guess it's okay if I told this story. Yeah. We had a conversation with a doctor. This literally just happened a week and a half ago. And she's familiar with Adam's case and she came in. It's, you know, running down, you know, rabbits that we've experienced in the past.

19:41So to speak a little bit of Southern language, running a rabbit. And so she and I are talking. And I'm like, okay, do you remember his reactions to the flow rates? Like, like, we, we've got to have a slow for a flow rate. And she said, that's no problem. She said even the recommended label on his dose for IVIG is to infuse over 10 hours. I'll just tell the pharmacy to send up the formulary chart for 10 hours. It's like, perfect. Well, the nurse gets there. And within 30 minutes, Adam's reacting to something that's been golden for him and he said something's wrong. And I mean, he has whole personality begins to change. And it's like, he walked out and someone else walked in. I knew something was wrong. I called the nurse in there and like, he noticed he's like, this isn't Adam. What's going on? And so we looked at the formulary chart and the pharmacist had sent it up to, to run over five hours. So he was getting infused too quickly. He was getting too many antibodies too quickly. And when that happens, you know, it can create a, you know,

20:42a storm in the body, an autoimmune storm. And that's why he was filling. And he was in so much pain because those antibodies, it being a blood product, it's got to do its thing. It's got to go where the blood is made. You know, we're talking about pain in his bone, the bony matrix. And so they came in and they brought in the night shift doctor and he's like, I don't know what happens. And I was like, I don't know, but stop this infusion. And he said, well, if you stop it, your insurance may not pay, pay for the rest of it. I was like, I don't care. Stop it. Like, I'm just like, what? Really? Like, so here we are, you know, talking about, you know, he instantly talks about insurance, not paying. And I'm like, he's in pain. Like, when it was severe pain, so they had to run reversal because his muscles were like literally just, I mean, it was just insane. Like, the way they, they were literally constricting. And so it took him about 12 hours to get over that one mistake. And so the doctors come in the next morning. I'm so sorry, I messed with luck.

21:43And you know, blah, blah, blah. And I'm just like, I appreciate the apology. But why don't you go get the pharmacist that messed up? And she's like, we're opening an investigation. And I'm just like, okay, fine, but what are we going to do now? And so I call you and I call another nurse that I know. And you know, just honestly, just just getting an advocate's advice. And so after about 12 hours, they come in again. And they check on him. And they're like, you know, mom, what do you want to do? And, you know, you being our insurance lady, you know, you're like, well, if you leave the hospital, there's a change in the hospital. Our insurance lady, you know, you're like, well, if you leave the hospital, there's a chance he can't get it for four weeks. But while you're there, that's what he's there for. Like you've cleared the air and explained, you know, what could be done. And so like just just having that sounding board, reiterating what the doctor said and in you basically correcting the doctor. So she's like, mom, what do you want to do?

22:43And I'm like, I want you to run a part of that dose. But you know, do it over six hours because he'd already had a portion of it. She's like, consider it done. How easy was that? Why could it's like, I just don't, I don't understand why, why does it have to get so bad before they listen? It's just like his oxygen dropped to 88. He was in severe pain, his blood pressure. It kept dropping. They couldn't keep his blood for all because the flow rate was wrong. And at that time, remember I called you and I was like, I should have been paying more attention. I should have advocated more. I felt like this is my fault. And then you reminded me, no, you're the parent. This is their job. They should have got it right. And it just, I don't know, just having advocacy on board. It gives you like, it's your compass. And it helps you think. And you know, it also helps you speak as you should to the position and to the nurses because like when they know advocacy is on board,

23:44because I even made the statement to them, I'm speaking to his advocate. They're like, oh, okay. Yeah. And so after that, they were like, she means business. And it's not the first time that's happened. But just having an advocate, honestly, it just, it solidifies in those doctors' minds that this family is very serious and we need to listen to them. Yeah. I had no, I had no point. Should it be that way? Right. You know, you shouldn't almost have to kind of quote unquote threaten that you have an advocate. The providers are there to work for you. Right. You know, to work for the patient. But it just gets so drowned out in the system that unfortunately, I think everyone who is in the hospital, especially if you're there for extended time or you're dealing with chronic illnesses, would benefit from having an advocate and an advocate. And, you know, there are parents become very good advocates

24:49and become very well versed on the system and the conditions that their children have. But at the same time, that doesn't happen overnight. That's something that develops over time. And what could happen in that time that you're learning, you know, you can get dismissed and not get the treatments that you need and, you know, feel like you're not being treated fairly. So that's when an outside advocate can step in. Now, hospitals do have patient advocates. So in a pinch, you can request a patient advocate. But what you have to remember is that these are still people within the hospital system. Right. I think the hospital that I worked at, I do think that some were volunteers. So they weren't really, you know, guided by the hospital itself. But basically, if you felt like something wasn't going well or going right,

25:53you could request these patient advocates. So it can be helpful. I don't think that that is the best advocate for you to have. And I want to dig more into advocacy and what we do with, with remnant health care and how that can help as well and how you got involved. We do have to take a quick break, but we're going to continue this conversation with Amy and dive a little bit more into how to get an advocate and what exactly they do. So you're listening to the nurses report on America Out Loud. We'll be right back. Let's get real. Let's get loud. On America Out Loud, talk news. Yes, this is Dr. Peter McCullough, and I'm personally inviting you to join me in Nashville. Until I second, third and fourth for historic experience in 2026. America Out Loud News, 250 slash 10 Nashville. Along with clear and the wellness company, we're celebrating two big milestones,

26:53250 years of America and 10 years of America Out Loud News. I'm calling all Patriots to this historic weekend, with inspiring entertainment, incredible fireworks, and nationally recognized speakers who proudly stand for freedom. I would love to see you there, because your presence matters, and you are family now is a time to get together and weaken, you know, exchange ideas, answer your questions, and enjoy fellowship. Join us and register now at AmericaOut Loud.News, forward slash Nashville. That's AmericaOut Loud.News, forward slash Nashville. We'll see you there. Are you struggling with thinning hair? Try roots from the wellness company. This Dr. formulated non-oily hydrogel uses seven powerful peptides and key nutrients to nourish your scalp and support visibly thicker, healthier hair. The twc.health forward slash Out Loud. News code Out Loud for 20% off your first order. That is twc.health forward slash Out Loud.

27:54In just two minutes per day, you could reclaim your health and cut your grocery bill in half with one simple convenient product. Our Dr. formulated green 85 juice formulas powerful dose of ultra-concentrated essential nutrients stops hunger in its tracks and supplies your cells with what's missing in the grocery store food. Go to chemicalfreebody.com, forward slash Out Loud today, get nature's super multivitamin green 85, empower your immune system, cut down on your grocery bill, and save 20% on your first order. Have you been looking for a healthy snack from the go? Well, not all energy bars are soft and sugary. Bear bars are a crunchy savory bar made from just six simple natural ingredients. Bear bars are plant-based, organic gluten-free, contain six grams of protein and are low temperature dried for a unique crunch. Most energy bars are based on chocolate or fruit and are held together

28:55with serps or sweeteners to learn more. Just visit bearbar.com slash Out Loud. You wouldn't go a day without brushing your teeth or washing your hands. What about washing your nose? I mean, your nose does filter the air you breathe. Air loaded with bacteria, viruses, and irritants. Make nasal hygiene part of your routine with clear. No messy bottles to fill, no drowning sensation. Clear is a natural drug-free saline with the added benefit of xylitol, which blocks bacterial and viral adhesion. Available in stores and online at clear.com. That is x-L-E-A-R dot com. In a world of rising prices, you can still grow abundance. I'm Doug Evans, author of the National Best Seller, The Sprout Book. Sprouts grow in three to five days without soil, sunshine, or fertilizer on your kitchen countertop for under a dollar serving. Take control of your food and your future. Visit thesproutingcompany.com slash Out Loud and use the code Out Loud

29:57for an exclusive offer. Grow food, not feed. Welcome back to the nurses before. I'm Ashley Caputo, registered nurse and functional medicine practitioner. And today we're talking about something incredibly important, advocacy and health care. My guest today is Amy Whitlock, and we've been discussing the real challenges patients face navigating the health care system. So before the break, we were talking about how important having an advocate is especially when you're in the hospital. So as far as, you know, your son goes, you have become like the gold star advocate for him, although you do, you know, need to rely on some outside sources. But for people who haven't quite been navigating the system for a while and are having difficulties, what would be kind of your best advice to them,

30:57especially in the moment when you feel like you're not being heard? Well, and not to use this as a fear tactic, but I do believe if you are advocate had not have volunteered to make that phone call. You didn't have to call me January 3rd. You did not have to, but your heart is for the children. And he was so sick, I believe, if we hadn't have had your help as an advocate, I think we would have lost Adam. I wholeheartedly do. As parents, we had to come to the realization that God's healing might not happen on this side, but his ultimate healing might have been in heaven. He was that sick. And I was so tired. I couldn't think. I mean, we would be up 42, 56 hours at a time. It was unreal. And if I dozed off, he would panic. What if I need you?

31:58What if I need you? And he was just, it was so pitiful. And as a mother, when you're running below E, and then an advocate steps in, like it's not just saving the child, it's saving the family. It's powerful. And I would say most families don't understand the impact until they've been there. But at the same time, I hope they never understand it at the level that we get it. And that's why I love advocacy because I want to rescue families from what we've been through. Yeah. Yeah. Because, you know, with Adam, I was like a dog with a bone, you know, I was like, oh, this is going to happen. Yeah. I, something touched me with your story. And I think God brought us together to help Adam, but also for us to meet each other. And because we've, we've had a journey, I think, you know,

32:59since, since we started working on this, and we'll, we'll kind of get into that. But, you know, it's easy to feel defeated in the system. And I felt that way as a nurse as well. So although your nurse is supposed to be your advocate, you know, it, it's not easy. And I, I have one story that really ignited my passion early on in my nursing career. I was working and I had this patient, and he had heart failure, and he had kidney failure. And he had been in the hospital for a while just really struggling with, with fluid balance he was having to get. The IV medications that he needed would affect his kidneys, but if he didn't get the medications, then it was affecting his heart. And it was just this, you know, if, if you're in healthcare, you know, the balance that you have to find when you have somebody in heart failure and kidney failure. And he was just really struggling.

33:59And so finally the doctor said, you know, we don't have an option. We have to do dialysis. And I saw his face completely changed when she was talking to him. He just sat and listened and she said, you know, I'm going to put the orders in. We'll get a dialysis catheter and we'll get you going. And she walked out and as any good nurse would do, you know, you're there to kind of translate and really talk to the patient. Because a lot of the times they don't speak up when the doctors and the room. So I spoke with them and he said, I don't want to do this. I do not want dialysis. I'm done. And we talked for a long time about this, the, you know, what it looked like if he didn't do dialysis, which was basically, you're probably not going to make it, you know. And he said, I understand that I want to go home on hospice. I want to spend time with my family. I don't want to die in a hospital. I don't want to spend time in a dialysis center.

34:59I want to go home. I want to explore to other options like home dialysis and all these things. You know, we, I pulled out all the stops because I'm like, this is a big decision. But ultimately he was like, no, I do not want dialysis. So I called the doctor and she said, well, that's ridiculous. He's going to get dialysis. Yes. So I was kind of shocked. I said, well, you know, you can come speak with him because I've had a long conversation with him. He's refusing. He does not want dialysis. So she came up and spoke with him. She walked out of the room and unfortunately she went in there. I was not, I was with another patient. So I wasn't in the room. And when I went in and talked to him, he said, well, I guess I don't have a choice. I said, what do you mean? And he said, well, she told me I'm getting dialysis. So fast forward, he ends up in the dialysis. Like it's interventional radiologies down there to get this catheter put in. And they called me. They said, I don't quite understand what's going on because he signed the consent form.

36:01But he says, this isn't what he wants. And so I kind of explained to them, well, they still went forward with it because he put his signature on the paper. And he got a round of dialysis. So he comes back to me and he sent tears. And he said, I told you guys, this is not what I want. So at that point, I was like, all right, I, I don't know what to do. But I have to do something. And I went to the chief of staff. I went over everybody's head, which is kind of a big no-no. But I did it anyway. And I called him on his phone and told him what was going on. He came and spoke with the patient. And he walked out to me and he said, don't worry, I'm going to take care of this. Through the doctor off of his case, cancelled all the orders, put in a hospice consult. And that same day, that man went home with hospice. About a month later, his wife came to the hospital to find me.

37:01And she told me that he had passed. But that she was so grateful that he was able to be home with his family. And thanked me for getting him, you know, getting him home. Right. And I knew in that moment, I was like, this is what nursing is about. This is what we're supposed to do. But unfortunately, you know, a lot of my colleagues looked at me like I had five heads. They were like, what are you? Right. You can't go up against these doctors. What are you doing? And so I did become the nurse that other nurses went to when they had to push back with the doctor. And they're like, do you actually can you call? And I think that's so unfortunate. You know, that that you get your fearful of pushing back. And I think parents and patients feel that way as well. Right. It's almost a title that you earn, but you don't really want. Yes.

38:01Yeah. Because in the earning is a lot of hardship. And I had like, we had a great, this last hospitalization, we had great nurses. But even they were like, well, I can pause the infusion, but I can't stop it. I'm like, I don't care what you do. Just just just stop it. Well, I can't stop it without the doctor telling. I'm like, he's having a reaction. You can't stop the infusion. Because I'll call. I think there needs. And I'll go. There needs to be some reeducation. Yes. Because that's not true. Nurses can use nursing judgment. And you know, you a doctor could put an order in for a medication. And if I feel that it's safe, I do not give it. He came back the next day. He saw Adam same on the board. He was like, when I came in and saw his name, I figured that he either had a worse reaction. Because he was like the night shift nurse. And he walked in. And we've had him before as a nurse. And he actually shares the name of one of our other sons. And he reminds me of our other son. And I'm just like, you know, you're like one of my sons. I'm not mad at you. And he's like, oh, I'm so relieved. He said, I thought I did something wrong.

39:01I said, you were only doing what you were told. And I was like, but just as a mom of why I always listen to the mom. And he said, yes, I will nail it. And I'm just like, you know, it was just, it was saying words. I was just sad though that he felt obligated to this doctor's demeanor versus the patient care. And he truly has a heart of gold. And he has like, he is one of the best nurses. But he felt limited. Because of what the doctor might say. I feel like there's something that's shifted within the system where the nurse's power has been kind of taken away. Yes. Yes, because we're we're very much autonomous. You know, like when when you have your patients in the hospital, you're making decisions about how they're cared for. So I go through their med list.

40:01And if I feel that a medication is inappropriate, I don't give it. Right. Now, I do let the doctor know I can't I can't put in an order with I mean, there are nursing orders that we can put in. But I can't just order a medication or cancel a medication, but I can not give it. And I can provide an alert to the doctor. Hey, this patient, because do you know how many patients they see in the hospital every day? Oh, yeah. And the nurse is one on one with how many? Like how many would you typically be on one on one with? Depending on the floor, you could have four to six. So four to six is very minimum compared to the whole entire floor. Yeah. You know what I mean? Yeah. I think doctors, I think it's unintentional, but you know, I think that's why the nurses are there to. I don't want to say catch a mistake. I'm not saying that not making mistakes. But there may be one medication that like might throw something off and you know. You're absolutely right, though.

41:01We are there to catch mistakes. And we even learn this, you know, in school, you have the doctor that orders the medication. And then you have the pharmacist that reviews the medication. You have the pharmacist that fills the medication. And then it gets sent to the floor or the orders get approved in the computer. And then what was always stressed to me was that the nurses are the last line of defense. Because I am there to review the order and review that medication. But then my job is also to administer it. So if there's been a mistake that has not been caught along the way, I'm the last chance for that mistake to be caught. And it does happen. I've caught med errors before and you actually have to fill out this whole report as a near miss and like all these things. It's a lot of paperwork. So you don't want to find mistakes. But but you do because we are all human. And there is a computer system in place to help catch mistakes.

42:05But a computer is not a person. So critical thinking is completely left out of it. Right. So, you know, I loved the team that I worked with in the hospitals. I would have pharmacists calling me and they're like, do you know what the doctor was thinking? Because he put this order in it. It just doesn't make sense. And then, you know, we would we would figure it out. And sometimes there was a reason, you know, and other times it was a mistake. Or, you know, they put the wrong. Yeah. And it's great. This is running another rabbit trail. But what I'm seeing very, very recent. I'm seeing too much AI. Yes. Take the place. I totally agree. I asked multiple times. Do you mind if I use AI to take your notes? And the pharmaceutical mistake was a big one. And I was wondering how it happened. You know, speaking of this last mission. I just have to wonder, you know, how was it generated?

43:06That wrong. And I know that speculation. I've got friends that spend in health care for over 20 years. And they recently lost their jobs because AI has come into the hospital. And it scares me. Because I still have a child that's in the system, if you will. But at the same time, that gets us back to this whole conversation of how important advocacy is. And I just, I don't know. I hope people, if they take anything away from this conversation is like how important it is. Don't, don't feel like you're less of a parent or less of a mom because you can't, you know, you can't do it all. Advocacy is not there just for the child. It's there for the family too. It's there to support the mom. And it's there to help things course correct. And I don't know. It's just something amazing that I think everyone should probably highly consider.

44:10And so I think Adam's situation. Ignited something in us because it like it. We already knew the system was like having issues, you know, just based on what was going on with him. During this time, you and I both began different, different paths, different naturopathic studies. And I love the fact because early on, we were joking about our studies. Like, wouldn't it be great to when they work together based on all our experience. And then here we are now having this conversation. And, you know, it's just, I don't know. It's just like a Romans 8 to 8 moment. Yes, yes. Yeah, God had a plan. We weren't quite aware of it. But, but here we are. You know, sometimes you just have to go along with it and trust that he knows what he's doing. Most of the time, I feel like I don't. So you just have to kind of throw that trust in. Well, early on, like, I knew like there was some needful interventions just based on things that we had done in the past.

45:10For Adam, that as a mother, I wanted to sharpen my intelligence. So I started out with something simple, like just a certified health coach. And just just to kind of reframe my thinking because like his case was just so severe and I thought, nah, I'm just, I'm not going to, I mean, yeah, Google's got some good info. But I want some like some concrete something to move forward. And I was just like, I was, I was taken like, so from there after the health coach course, like I went on into the holistic health practitioner. And that was pretty, pretty early on. And I think like how far into Adam's case, did you look into the functional MD? I don't, I don't remember, but it was, it was relatively, it was relatively after he started quick, relatively quick apps started showing improvement. Yeah, it took me a little while. I had to, to research, I couldn't quite find the right place. And I talked with Melissa about this because it wasn't until I came across the functional nurse academy that I was like,

46:10oh, this is where I'm supposed to be. It just felt right. And then I kind of drug my feet through the courses because there's just, for me, there was a lot of self doubt. Like, is this something I can do? Do I know enough? Can I do this? But I'm so passionate about it that it was, I finally, I just said, you know what, this is what I'm supposed to do. Um, which then led me to remnant healthcare. And then eventually brought you on to remnant healthcare. So it's, it's been quite the journey, but it's, it's been a lot of fun along the way. And I think we've learned a lot. And with remnant, they do offer advocacy services. So anyone, the patient, family member, friend, whoever can reach out to remnant and get an advocate, like someone like me or you get a shot or both of us, because we've, we've worked together on cases.

47:11And, and be someone's advocate. So talk a little bit about what we do for remnant. If you, if someone is to have us as an advocate, what are some of the things that, you know, where do we start? I'd say we, we pushed the doors open. I mean, just recently, like the other case, or kick them. Yeah. Yeah, like we're getting this done. So, you know, the most recent case we worked on, um, the, the family was literally in a non-month struggle. And so we were both asked to tackle that case, just due to the complexity. And, um, you know, we ended up you and I in the family. And basically, like half the hospital board was on a call. And do you remember they kept muting us? They did. Yeah. muting us. Yeah, thanks. Like, somehow we kept losing service. Yeah. I mean, in today's age, you don't lose service like that. And I'm sure it was on a land line that they were using. Yeah.

48:11Yeah. Well, you know, they were listening to us because when they would come back on, you know, and take part again on the dropped call, they were following up on what? We were discussing as we were muted. So like, And how do you drop a call and then get back on it without calling? Right. Like, you know, someone hit that mute button is what happened. But well, so to paint the picture, um, we had a patient that was in the hospital. And the family just felt like they were pushing her out of the hospital too soon. That it was not a safe discharge, but then that they were also trying to send her to a place that wasn't appropriate. And so we stepped in. It should be so nasty and dirty. And the physical therapy was on the top floor. And, you know, she had no way of physically getting up there. And it was a mess. It was, yeah, it was no appropriate for her. And for just so everybody understands when you are in the hospital, you can refuse a discharge.

49:11If it is unsafe, they cannot discharge you. And I've been in that position before as a nurse where I push back and I'm like, guys, this is not a safe discharge. Like, I'm either not going to be a part of it or we're not doing it. Um, so, so you do have rights. And there's appeal paperwork. You appeal with the hospital. If your insurance is denying your ongoing stay, you can appeal with the insurance company as well. It has to be a safe discharge. Those sad people don't know they have right. They don't. And nobody's going to tell you. No, they're not. Unless you have a cool nurse like me who would sneak the paperwork and say, hey, just so you guys know. But yeah, it's not like it's just readily available. You have to request it. And how do you know to request it? Yeah. So when we did the initial consult with the family and she told us the story, I was like, this is a nightmare. Like, did this really happen? And so it it.

50:12Again, it's just we have we do not have health care anymore. We have disease maintenance. Yes. And we have red tape and bureaucratic people coming in and being like, no, it has to be this way. And we we know good well. There's a different way as advocates. And so when after that initial consult and then we we scheduled that. That consultation that conference call with the hospital and everyone there. What it was the next day, like when they found out the family, because the daughter emailed the case manager, I have hired an advocate. And boy, it got hurt. And I even provided some verbiage for her to use. Yes. So yes. You know, I think advocates were here in so many different ways. We're here to support the family. You know, what do you need emotionally? Like what what is it that how can I help you? And then you're you're there to help navigate the system. And even where you can't step in, you can help the family.

51:14Step in and provide information and verbiage and research. Like, you know, they don't want to give them medication or something that you're. You can provide research that backs what you're requesting. So there's just so many ways that someone can advocate. And also an outside view. You know, you're outside looking in because there's a lot of emotions involved. And you can come in and look at what's going on and get a different perspective and make some recommendations. So it's so it's so important and the attitude, like you said, the whole attitude of the entire care team changed when they knew that we were on board. And we got what we wanted, not because we are magic, but because it was what was appropriate. And I don't think it's our titles. I think it's our experience. Yes. We've been through enough to know how to finagle some things.

52:16And it's not that we're, you know, doing anything wrong. We just know where the loopholes are. And lack of a better word. But like I really don't think it's our title. Although I am grateful for, you know, just being at remnant. And I also want to point out, you know, as practitioners and or advocates, like we have access to the whole entire board at remnant. And if there's something we don't know, you can pick up the phone and be like, here's the case. What can we do? And I love that. We've got so many people available at our fingertips. That's willing to help families because everyone here at remnant they understand. The impact that we can have, but they also understand. Because they have come out like you as nurses and practitioners, they've come out of the system to reframe something for families. And I'm also very excited that we're about to launch our family packs, our family bundles where the families can, you know,

53:18if they don't want to go to the emergency room or if they're unsure, if it's any emergency situation that can call us at any time. And they assess and we can be like, oh, yeah, this, this warrants the ER. Yeah, you know, I just, I don't know. I love it here at remnant and I love what we do. I do. They offer so much. I mean, it's not just advocacy services. You can work one-on-one with a practitioner for any, you know, health-related goals that you're working on, whether it's your navigating cancer treatment, you're just wanting to improve your health, lose weight, acronic illness, or like in Adam's case, you know, you feel like you're not getting the answers that you deserve. You don't have that diagnosis, you know, remnant health care is there to help and we'll, we'll put the link in the show notes so you can reach out if, if you're interested or needing any services. I know, I know we're running out of time, but recently through remnant,

54:20I purchased Adam. I probably, I contra-vossed versatile medication and because, you know, we discussed with the team about putting Adam on average. And that's something that we offer to our clients. And of course, we were about to start one of our homopathy programs with Adam. So it's a good place to be very clinical, but yet very holistic. That's why I love it at Rome. Yeah, it's individualized care. You're meeting people where they're at. I mean, for instance, I have one client that I'm working with that is receiving traditional cancer treatment, chemo and radiation. But alongside that, he is going to be using some alternative therapies. So I'm walking with him through that journey and another client is completely not doing the traditional cancer treatment and is only going to be doing alternative.

55:21So I think that's an amazing aspect that you really meet people where they're at and what they're needing, you know, and with advocacy, you know, it's something you don't know that you need until you need it. But I think we're here to just kind of encourage people that there are advocates there. I think anybody going into a hospital situation should have one, you know, and organizations like Remnant Healthcare provide those services. I will partly encourage that like if you know you've got a hospital something about to happen, I would not. After what we've been through and after what we've seen. Yeah. With other patients as were admitted, I would not go into a hospital situation without an advocate. No, I wouldn't either. Even being a nurse, I would have an advocate for sure. An advocacy, I mean, it exists because people deserve support.

56:24Navigating a system that is incredibly complex, you know, and in your tired, it's exhausting. So having that support there is just amazing. If today's conversation resonated with you, there are resources available. I will put links in the show notes and, you know, we're here to support you and help you navigate all these complex medical situations. So if you're feeling stuck in the healthcare system or struggling to get the care that you are your loved one needs, having someone in your corner can definitely make a world of difference. So thank you guys so much for joining us today. We are happy that you're here and continue to ask questions. Remember when it comes to your health, asking questions and advocating for yourself is allowed. It's your right. So we will see you next time on the nurses' report. Take care. Thank you, Ashley. It's time and this is why.

57:30It's time and this is why.