Why It's Important to Question Our Children's Doctors

Do you ever find yourself wanting to ask your child's doctor(s) more questions, but find yourself holding back?  Today is all about arming you with strategies to take control of medical decisions for your child. We share how we confidently question our daughters' medical providers and expand on the importance of questioning  in our role as advocates. You'll learn how to push past  "white coat syndrome," weigh risks and benefits of treatments, and learn the value of hitting pause so you aren't rushed into a decision before you are ready. We highlight the importance of considering the impact of these decisions on your entire family and emphasize the necessity of choice in selecting your child's medical team. It's no secret both Emily and Ashlyn are big supporters of seeking multiple opinions when possible! So press play, prepare to be empowered by hope, and together, we'll navigate these challenging waters.


Get your copy of She is Charlotte: A Mother's Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon today: https://www.amazon.com/She-Charlotte-Emotional-Spiritual-Complexities/dp/1735401994/ref=sr_1_1?crid=3B8LVR7E5PLSH&keywords=she+is+charlotte&qid=1697506854&sprefix=she+is+charlotte%2Caps%2C152&sr=8-1

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Transcript

Speaker 2: 0:13

Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while empowered by hope, is here for you, though we wish you didn't know this heartache. We're so glad you found us, so together we can walk this journey in hope.

Speaker 3: 0:36

Hello and welcome to the empowered by hope podcast. It's your hosts, ashlyn and Emily, here with you together today, which we always love the best when we get to do this. And, emily, thank you for running solo with last week's episode. It was awesome. If you haven't listened to it, go back and check out her gosh, your what would I call it? Your overview, your 30,000 foot view of what a month is like. You know, caring for a child with medical complexities and I would say it was caring for a child like on the level of steroids, how much goes into it and how much you handled and you act like it's just. You know well, it is just another day, another month gone by for you and there's just so many awesome tips to get from that. So if you haven't checked it out, be sure and listen to that episode.

Speaker 3: 1:29

But today, emily and I are excited to talk to you about something that's really really important to us and in our journeys with our girls, and something that we've learned, sometimes the hard way, and we're probably still perfecting and will be, but it's really one of the biggest keys to to becoming an empowered advocate, and that is learning to question your child's doctors, their medical care providers with confidence and with you know, with trusting yourself that you're asking the right things and that you allowed to be and should be asking questions, that you yourself, as the parent, as the caregiver, have a seat at that very important table and in fact, emily and I would probably say you have the head seat at the table of providing guidance and requirements and requests and all those things at the table for your child's overall treatment, care, quality of life decisions, et cetera.

Speaker 3: 2:30

So we are excited to dive into that topic today. But before we do that, we love to open up with you all, share what's going on in our lives, because there is no shortage of things that are going on. So, emily, I'll toss it over to you to give an update and then I'll wrap in with my, you know, one or two little things that are going on.

Speaker 3: 2:50

Yeah, just a little just a little, and then we'll dive into our topic today.

Speaker 4: 2:55

Fantastic. Well, let's see where to begin. Well, I gave you a whole month in the life of last week. So since that recording we have been navigating fevers and testing to figure out where those fevers came from, and one or two ER trips, I can't remember now, I think just one. We almost went again but decided not to and thought it wasn't a UTI, maybe it's just viral. And then three days later the culture comes back. In fact it is a UTI, and not only is it a UTI, but it is a UTI with a bacteria that is resistant to all oral antibiotics except one which tastes disgusting and is only available on the market in one form.

Speaker 4: 3:40

So that has been the last week on the medical front of just trying to find where this one antibiotic is and what dosage can we get, and can she swallow it? Or do we need to be admitted to get an IV for this antibiotic because it tastes disgusting? So, thank goodness, charlotte is a champion the first night and this is how it always goes when we have a new medication we have to take, which happens all the time, especially if it tastes bad. If it doesn't taste bad, she has this reaction of just losing it. Usually she breaks out in hives, she's sobbing, she vomits, usually, and then eventually she takes it and then literally the very next day she'll take it for the 10 day course or whatever. It is no problem. This is how it goes every time.

Speaker 4: 4:29

But you know, my husband and I have talked like this is her trauma response to being put on all these new meds. So we have to find ways to help her feel and control. You can't control the fact that you have to take this medicine, but do you want apple juice with it? Do you want it crushed? Do you want it cut? Do you want me to hold you while you do it or do you want to sit on the floor? Just all that fun stuff. I know you've been navigating a very similar situation with a little someone.

Speaker 4: 4:58

So, yeah, that's been going on, still determining whether the antibiotic is doing the job or not. But in the meantime I was preparing for a talk I delivered at the Parents of Parent Leadership Institute actually literally an hour ago, which is very exciting A conference through an organization that we have partnered with and absolutely love. Lily Brown, their co-executive director, has been a guest on here several times, and so I was honored and privileged to be able to represent Charlotte Tope Foundation and be a speaker at their online conference, and we talked about the number one tool to combat the epidemic of isolation, and so that was really fun to be able to do that. What else has been going on? I think that's a pretty good update.

Speaker 3: 5:42

Well, I can say that it was the. I was really excited. It's the first time I have actually got to watch Emily present live and I can only imagine how much better it is, even in person, because it was great online, which is not always an easy thing to do. So I'm super proud of you, friend, and excited to. I think we'll be able to share some of that here in the near future, hopefully.

Speaker 4: 6:04

Yeah, we'll have the recording and get it out to our followers. And yeah, it's definitely. I know a lot of people are, you know, scared to public speak. It's like the second fear, I think. But for me, I was born to do it. I don't know why I just I like it. It's a lot of fun.

Speaker 3: 6:22

Oh my gosh. Well, I don't know why.

Speaker 4: 6:24

But some of the things that have been the hardest for you your your biggest struggles and you get to turn them and use them for those who have come to to hear you talk, to help them grow and flourish, and I just love that. I guess it's a teacher's heart, so it's a teacher's heart.

Speaker 3: 6:41

And it's your God given talent, no doubt. Yeah. Well, on the Thompson front, let's see here. Two weeks ago I officially gave my notice to the corporate world in my career and I am so extremely happy that this day came. It actually came up a little faster here at the end than expected, or you know, quote unquote planned for, but I just know in my heart and my gut and all the ways that it was the right time to do this and I am so excited to be going all in on Charlotte's Hope Foundation, on the Empowered by Hope podcast, and then on the side, I've also started this really cool bracelet journey that I'm going to be sharing with you all here in the future and bringing these things that I called Hope bracelets that were kind of a vision of mine a while ago. So, anyway, jumped into that and working on transitioning to life without 8,000 emails going off every hour on the hour, which is a wonderful, wonderful thing I do not miss at all. I think the twitch in my eyebrows finally gone, so that's really good.

Speaker 4: 7:58

Well, we at Charlotte's Hope Foundation are elated to have you 100% and I mean, guys, look out, things are gonna. I mean things have been happening and how, I'm not exactly sure. Somehow, and I know it's by the grace of God between you and I and all of our surgeries and our work and our this and our that we like looking back to what has been accomplished since the inception of Charlotte's Hope Foundation is absolutely astounding. And now to think that you are stepping 100% into the role of executive I mean, you were executive Hope director, but being able to do that with all your time instead of being divided is so exciting. So watch out, world, this thing's about to explode.

Speaker 3: 8:41

Yes, it is, and my first step many plans oh my gosh, all the plans.

Speaker 3: 8:45

That is never a shortage here and, in fact, if you want to hear some of those plans and learn about some of those things that we've already done, please, please, please, provide us your email by subscribing on our website, or you can always send us an email or dms on our social channels, but send us your address and we would be so happy and honored to send you our first official newsletter or annual update, or whatever we're going to call it. Don't expect a certain cadence yet. We're not there on our way eventually. We're just not ready to commit. Yes, exactly, we're committing to enough other things.

Speaker 3: 9:21

Yeah, but in terms of things that I committed to one of my first steps afterwards and this is just a little breadcrumb for you all but one of the first things I did was invest in this really awesome program by Amy Porter Field, and we are going to be venturing into something that we've been asked to do for a while, and now it is the time I actually have time we are going to be creating some really awesome, super powerful and very much needed digital courses to help parents, caregivers, navigate this world, especially earlier on in your experience. We are just so excited to have more of that to share with you as time goes by and look forward to hopefully having something live as early as beginning of 2024, and I'm saying this now. I'm saying this now because this is an accountability thing, folks, so we're doing it for it.

Speaker 4: 10:14

It's happening, it's happening. And also that reminds me I forgot we're also enrolled in a motivated mom prenuer program with Leah Dero, which has been so amazing. It's been a three month course. We're on month three now. I think we have three more weeks to go and we've been talking about branding, we've been talking about marketing, we've been talking about mindset, and so we are just like the canon is loaded. Watch out, it's about to explode. It's very exciting. As I've told Leah over and over, it's no shortage of enthusiasm, passion or ideas. The key is narrowing in on, like the one or two, that we're going to move massively and I think courses is one of them, so obviously the

Speaker 4: 10:57

podcast and I'm also a speaker, obviously. I just, you know, told you I was one an hour ago, and so that's something we'll really bolster quite a bit to get in front of medical audiences, get in front of parent groups to be able to shed light on the realities that is, you know, living the life of complex medical needs and help guide the medical community as they're building complex care clinics. And also help bolster parents to, you know, embrace the role of complex care, mom and jur and and what that looks like. So it's very exciting. We have lots going on. You're going to be seeing our website updated. You're going to be social, seeing social exploding. You're going to be seeing lots of things happening, but we also have to pace ourselves because, you know, while, yes, you have quit your full-time job uh, yeah, gotta take some deep breaths. Do a couple things at a time.

Speaker 3: 11:54

Yes, yes, and if you're listening to this and you are a social media guru, we are always open to great advice with our any tips you have on how to make that easier, which I know there's lots of ways to do it, but we would love, love, love to hear from you if you have some recommendations on some things you think we could do to help elevate ourselves in terms of social, because we've had a lot going on and I can say that that has not been our number one priority.

Speaker 4: 12:22

Nope, at this point but we are in a social challenge right now with the motivated mom, motivated mom-preneur program, so that's been fun. It's been forcing me to post things that, um, you know like, I have post ideas at least five times a day. It's just a matter of actually stopping and posting them.

Speaker 4: 12:40

So it's been good to be encouraged that, um, you know we're in this challenge, so that's very exciting.

Speaker 4: 12:46

Okay, so our topics today. I love how you said we are here to talk about how to question your child's doctors with confidence, and I think this is very important because at the very beginning of the journey, it's very easy to think that doctors know a lot more than me. I don't know that much, so I'm just gonna listen and try to. Basically, you know, hold on tight, but any good talk, any good doctor would expect you to ask questions. They might not say that you should ask questions, but any good doctor will expect that you will because, yeah, the doctor of course has the knowledge about whatever it is that you know the diagnosis is or whatever the specialty is. You have knowledge of your child. You also have knowledge of what your goals are for your family and for that child, and so it is 100 expected that you're going to ask questions, and as many as you need to, until you feel satisfied and then you can follow up and ask more after you've thought of them once you've left.

Speaker 4: 13:50

I think you and I are the queens of questioning queens for sure, my husband's always like okay, I think that's enough questions. I'm like nope, I got 10 more.

Speaker 3: 13:59

Hold on oh, and that's usually just getting started, and that's why I still have a hard time realizing it is not the norm to get your specialist mobile number or WhatsApp number so that you can basically reach out to them anytime as needed. I don't always expect immediate response.

Speaker 4: 14:17

I'm just gonna say I've got over 20 specialists and literally none of no okay. One one has given me their mobile and I've asked, so it is not normal, asha maybe you can start a WhatsApp group for all her specialists.

Speaker 3: 14:31

Oh geez, okay, just kidding actually that would be really difficult to navigate a lot of work, moving on or moving back to our topic, right, so, asking questions with confidence and I just think it's really important to focus on the fact that this is your right as your child's advocate, to ask those questions and it is just evidence of your love, of your commitment, of your concern, all of those things for your child, and that is not anything to apologize for.

Speaker 3: 15:09

Now, absolutely, how you ask the question is also important very much, right? Tone is something that always plays into it, right? We all know how to ask questions respectfully and that's certainly something that you want to be able you know who encourage to always do, because you want to be a part of the team, you want to work with your medical professionals. Asking questions does not mean that you doubt your, your medical professional. It does not mean that you do not trust them necessarily, but that lack of understanding or concerns often we can bring things to the table that they're not able to think about because they don't live the day in, day out. They don't know your child as well as you do, nobody does, and so you can bring up questions that would never even cross the radar, that could, honestly, sometimes even completely change the way that your child needs treatment you're familiar with that, aren't you?

Speaker 4: 16:06

But we have to go down that path because that's going to be a big story we have to share. I mean, we've shared a little bit, but we have to share it in this episode. Yes, I think how you question is very important and also really recognizing. Okay, if you are in, let's say, an ICU setting, let's say you're in the NICU, or you're in the PICU, or you're in a very critical moment with your childcare, it might be so overwhelming and so intense that you feel like you're basically watching it go down right. You're just like a fly on the wall, and it can feel like you have no control over anything.

Speaker 4: 16:43

But here's one aspect I guess I'm gifting you if you're in that situation, you do have control over understanding the situation to the best of your ability and being the voice for your child. And this is the exact way you can do it. You know, if you're in rounds and they're rattling off a bunch of things and they get to the end and they're like okay, do you have any questions? Your answer is always yes, and then, whatever questions you have, you ask them, even if it makes you feel like you're the one with the least amount of education in the room is totally okay, right, because you don't have a lot of control of a lot of the things going on, but you do have control of your better understanding of it and you're going to be able to be the advocate then, because you'll better understand things and be able to be like.

Speaker 4: 17:28

But is that really our best approach? Gosh, I question doctors all the time, I'm sure to the point where I drive them crazy, just purely because it takes a lot of time. But you know, like, if somebody puts us on a new drug, okay, well, tell me why that drug and why not another one If somebody, you know, if we just play with that example and go along with that. Oh, I just heard a baby noise and it distracted me because they're so stinking sweet. I am, yeah.

Speaker 3: 17:56

Okay, and Mary is here and Cole is home too. My mom just walks in with them because Cole, my six year old, had his tonsils taken out last Friday and ear tubes put in, and you know, I'm thinking a little bit more about it. I think the way that Cole is acting is probably, truthfully, his trauma response to his experience with his sister. But Cole is not a fan of taking any medicine, and so we keep finding ourselves in the position of him being in extreme pain, and it's been rather frustrating, but we'll talk about that more after we get through this. We're going to survive this first.

Speaker 4: 18:34

Well, and isn't it funny too, because we've been through such big surgeries we tend to brush things like, oh, ear tubes and you know, tonsils out. We're like, oh, it's no big deal, we'll just. I remember you were like, oh yeah, we'll record a podcast the next day. I'm like no, you're not going to do that, I know it's minor compared to other things, but it's still surgery.

Speaker 3: 18:55

Well, you're right. It helped me realize that my perspective has been skewed a bit because of the degree of surgeries that Emery has had that tonsil lectinine is still a really big deal and it's still super painful. It's painful, it's very painful and nobody wants to deal with pain, and especially not a six year old. So anyway, back to our topic at hand, and I already forget exactly where we ended things, but the one thing I know that I wrote down so I wouldn't forget, is Emily brought up such a like you said it was a super helpful little gift to give you that you do have the right to ask those questions, even in chaotic situations, like you know, if you're in NICU, picu, et cetera, always ask questions at rounds, even if you need to ask them to.

Speaker 4: 19:44

you know, is this what I'm saying back to you and my understanding correctly, the plans, yeah, that's a great one to repeat what they said and then be like this is what I'm hearing you say. Is that what you meant, Right?

Speaker 3: 19:56

Exactly Because a lot of things get lost in translation. And I'll be honest, like sometimes I've even had the experience where, like different doctors from you, know different cultures, different backgrounds, sometimes their language is a little bit different than what I'm used to using, and so they might mean one thing but I'm interpreting it as another, and so when I take the time to reiterate what I believe they've said, then that's an opportunity to clear up some confusion so that we don't end up, you know, later that afternoon and I'm saying why is my daughter getting this? Because this, I was told this was only going to happen if this happened, you know one of those deals.

Speaker 3: 20:32

Yes, but the other thing that's really important to hear and please, please, please hear this it is so easy to feel like there is no time to ask questions or that a situation like it's too critical, it has to move too fast, that hitting pause button is the last thing that you can do. I'm not saying that there aren't times that that is the case Of course there are but more than not, it is usually okay to hit the pause button and say you know, I need more time to understand this better. I need to ask more questions, or I need to take some time to think about the questions I have after digesting all the information I just had. Yes, or I would like to get a. I'm the you know, we all know, emily and I are like the queens of multiple opinions, so that's usually another step for me is okay.

Speaker 3: 21:25

I know we need to move quickly on this, but I personally like, in order to find the piece to make a decision that is, you know, usually very weighted, I would like to take time to ask some questions to somebody else you know, another doctor or another patient, family maybe who's been through this beforehand, to make sure I'm not missing something, and that way I can have the piece to say, yes, I agree with this plan. Or, alternatively, actually can we look at this option instead? Or these are my concerns. What have you? Yes, if you hit the pause button, you do not have to constantly keep moving forward to make progress.

Speaker 4: 22:05

Yes, yes, oh my gosh, we can apply that to everything in our life, Right, but it's so true. The other thing I wanted to point out is you know, if anybody has been in the corporate world or really any team at all, you know that any good team, any good functioning, high functioning team, questions each other, and they don't do it because they don't believe each other are talented. They don't do it because they're questioning the other person's integrity or their knowledge or anything, but because you know one person might think about it one way and another thinks about it a different way, and so I mean that was something that we talked about a ton at my previous work, where we were like we need to question each other and we need to be able to do it comfortably. There's nothing wrong with asking questions. So you know, keeping that in mind, this is your medical team for your child.

Speaker 4: 22:55

You are I would like to say like you are at the head of that team. You're the captain of that show. You're the captain. It doesn't feel like that a lot, but you are, and so you have every right, and not only right, but job. It is your job to ask the questions that are going to help you feel confident, or at least not totally uncomfortable with the direction you're going right with their care. And then so just transition to how do you ask questions? Well, right, Well, before I do that, do you want to make any other points? No, let's continue on.

Speaker 4: 23:28

Okay. So how I often make a list of questions before we go. I have a running notebook that I just take to every appointment and I will like, if I know, oh, we have cardio next week and a question pops in my mind, I'll write down on the page that I'm going to use for cardio appointments. I'll write that question down or I'll put it in my calendar, like if I have a you know the cardio appointment on my calendar for Tuesday, the 5th, then I'll go into that event and I'll write the question in there so that I have it and it's out of my brain. It's in like so I know I can access it at the time that I need it. So that's yeah, go ahead, you're raising your hand like you're.

Speaker 3: 24:04

I just I really did. Yes, here I have a question. No kidding, um, for the people who are not super tight, who are not like type A or really organized and like Emily is so fantastic with that stuff, I just keep a note in my phone, like as questions randomly pop up. Sometimes you know that can be the easiest place to just add your questions in that as they pop up. That's fine, and I want to add on too, emily, how many times have you had your list of questions and then you just run out of time, like you don't get through all the questions right, or you go down a rabbit hole with like one or two questions and then you end up with 17 more questions that you didn't have on your list.

Speaker 3: 24:47

My recommendation for that is your last question should be if you don't get everything answered, your last question whether it's to the doctor or the nurse before you leave is what is the best way to send you the rest of my questions so that you can answer them, you know, in a timely manner and what works for you, you know. Do you want me to email you or should I email your assistant? Should I be doing this on the patient you know on our patient portal. Submit those questions, have a plan and let them know to expect more questions are coming from you and you in turn, expect answers for those questions.

Speaker 4: 25:24

Yeah, that's fantastic. Yeah, I love that. The other thing is if a doctor answers you know if you have a question and they don't know the answer, which is totally valid, and I love it when doctors say I don't know because, then it's like okay, I appreciate that you're honest with me about what you don't know. That's great. But then the follow up question to that is well, who do you think I could go to to help me get the answer to that? If it's an, you know, and it depends on the question. If it's critical for moving forward, then you know recommend like.

Speaker 4: 25:53

I remember last year we ran to a point in Charlotte's care where one of our specialists was like I don't know what the problem is. I've done everything, I know how to do and I don't know. And I just looked at her and was like, okay, well, I really appreciate all that you have done. Who do I go to next? Because there's no need for you to go out. I mean, you can, but there's no need for you to go out and research what the next step is.

Speaker 4: 26:17

The doctor probably knows they just might not have stopped long enough to be like ooh, let's send her to this person, whether it's a second opinion, or it's a totally different specialist that might be maybe look at the problem from a different organ system or whatever. So that's a really great way to do it too. If the doctor has kind of reached the end of what they can provide, you can just be like okay, where do I go next? And there's nothing bad like. I remember feeling nervous to ask that because I didn't want her to feel like I thought she was less than, but she point blank told me she didn't know. So that's totally fine to just be like okay, who do I go to next? And she gave me three names and it ended up being the best thing for us.

Speaker 3: 26:57

That's awesome. I remember when that happened and I give a lot of credit kudos to doctors and nurses. You know people who admit that there's something they don't know. So long as the follow up to that is okay, how are we going to, like you said, what's the next step? How are we going to figure out this information? Because we can't just stop at the point that you don't know the answer.

Speaker 4: 27:20

So let's figure this out together. Yeah, if it's critical in their care, then what's the next step? Yeah because there's some questions that are like, well, that would have been nice to know, but you don't know, and that's fine. But there's many that are like, well, I can't move forward with a plan until I have the answer to that question.

Speaker 3: 27:33

Right, yes.

Speaker 4: 27:35

And I mean truthfully, if there's okay. This reminded me of a story. So we had an ophthalmologist, a fantastic ophthalmologist, an hour north of us. We've been going to him since she was a baby and we were just going there because all our other specialists were there. But you can like, there's ophthalmologists everywhere.

Speaker 4: 27:51

So while we were driving a whole hour to get to an ophthalmologist, I asked him. I was like I love you, you are fantastic, but it is so silly for me to be driving an hour for you to look at her eyes when, yes, she has some unique things about her eyes, but it's not life and death, like it's not like any ophthalmologist can do it Right. And he laughed. He was like okay, well, where do you want to go? So I told him the hospital or the area I would like to go and I was like can you give me a recommendation? He goes, yes, and he goes.

Speaker 4: 28:18

I'm going to send you to this one and not that one, because you ask a lot of questions and that one is not going to be patient with you with all your questions, but this one will. And he chuckled and I was like well, I appreciate that, because that would have been very frustrating if I got sent to somebody who would just be like tell me the script and send me home without answering all my questions. He was like, yeah, and I don't mean that with him probably two or three times and honestly, ophthalmology is so low on our list of priorities that I don't think I had that many questions for him. So if he thought I was some of you questions a lot, imagine whether urologist thinks or the gastroenterologist, they're probably like.

Speaker 4: 28:58

Emily's coming in with Charlotte. We need two hours.

Speaker 3: 29:02

Oh, I love that and there's absolutely nothing wrong with that, and I'm sure that there's other parents who hardly ask any questions, so the time probably all balances out eventually, yeah it's all good.

Speaker 4: 29:13

No big deal, but in our case, I think we have so many complexities going on. If you send me home with a glasses script, I need to know a lot more about it. Or lately, we've been told we have to do patching. Well, tell me the implications. What if we're in a surgery and I don't have the time to do a patch for a whole month? What's that mean? Like what? How does that end?

Speaker 4: 29:33

You know which in fact, we yeah, we were sent home with patches and haven't done it for three months for that exact reason, anyway. But yeah, those are the kinds of questions that, like, are constantly popping up in my brain of like, well, if we're going to do this, how does that impact that you?

Speaker 4: 29:49

know, or even we're put on this antibiotic this week and I'm asking well, what about how it interplays with the other medications and what about the fact that we have prolonged QT and that drugs interplay with it? And you know just these things. If you have these questions, ask them, and if you don't have questions and you're feeling like, oh my gosh, I'm a bad caregiver because I don't have all these questions. It's okay, you will have questions when you have them and, when you have them, ask them.

Speaker 3: 30:17

Right, that's all we're encouraging is we're not saying that you know you should walk away from this thinking you need to ask a minimum of, you know, seven questions every single time you're having conversation not the case at all. We just want you to be empowered and understand that it is your right and it's the right thing to do to ask those questions you have because you have them for a reason. That intuition, that those gut feelings, those, those are what we want you to listen to. That's what helps make us really good advocates. One of the other things that popped into my head that I think is a really important question to keep in your back pocket that can be used a lot of times is is this critical or is this absolutely necessary at this age or at this time? Because doctors will always, always pursue more information, more data, more tests, right, like that's that's what they feel their role is, and a lot of times that's great and helpful.

Speaker 3: 31:13

But you know, I look at our somewhat rather limited experience in comparison to Charlotte, but with Emory we've been through experiences that have been highly, highly traumatic and I started asking some questions about you know there were some tests that were ordered last winter for Emory and they wanted to do them while she was awake and I was just, I could not shake. I just had this pit in my stomach that this was just really unnecessary to put her through that trauma again, when the reality was we weren't at the time, we weren't going to be taking any steps forward anyway anytime soon. So why would we get information at this age if it's not going to make a difference in how she's being treated for at least another year or two? And I understand wanting to get benchmarks, but you know, had Emory been experiencing a lot of UTIs or something or other symptoms, other concerns, I would have looked at it differently. But because she was doing so well, I felt confident enough to question and say I would rather we let her just keep being a kid and we only do things that are really critical.

Speaker 3: 32:27

And I learned that from you, emily. You taught me that and I think you know. The first way that you taught that to me was when you told me the example of you know if Charlotte was going to have an upcoming, you know, procedure or something that was going to be done under anesthesia and you knew that she was going to need lab sometime soon or she was going to need some other type of assessment that's maybe uncomfortable. Can we stack these things so that she's only under anesthesia once and everybody's getting what they need with the least amount of trauma to Charlotte? And I just think that's a really powerful thing that we can question and we can consider, because it's not that the medical providers don't care about our children's well-being and you know where they are emotionally.

Speaker 4: 33:10

I mean, that's their job, they, they, that's what they love. That's what they do. Yes, but right.

Speaker 3: 33:16

But we're the one that's use them.

Speaker 4: 33:17

Yeah.

Speaker 3: 33:18

Yes, we know the. We understand the cost, yes, of some of these things that take place and you know you talk a lot, emily, about. You know risk versus benefits and that's a great way to help come up with questions is to start you know whenever something is being considered or needs to be addressed, write your own list of risk and risks and benefits that you are understanding and then have that conversation with your doctor and that could help bring up a lot of really great questions for both of you to understand.

Speaker 4: 33:51

That's so good I do. Actually, now that you say that I do that a lot, where you know it's surgeon will say well, you can do the one of these three options. And so then I go home and I write down well, if we did this, this is a pro, this is a con, blah, blah, blah. And they go back to them and be like am I missing something? You know, that's really powerful because then it opens the conversation with them to really flesh out the options a little bit more, and I wholeheartedly agree.

Speaker 4: 34:16

One a fantastic question is what you were saying is is this medically necessary, whatever test or whatever we're doing? And also, does it have to happen now? Like we, our ENT has said that we need a tympanoplasty, which is where the ear tubes fell out and the holes of the the ear drum didn't close. So basically he has to reconstruct the ear drum and it needs to be done in both ears. And he was like, yeah, okay, we'll get that on the books. And I think he thought I was crazy. But I was like, look, we just had surgery number 17.

Speaker 4: 34:49

This was probably a month before he told me this about the tympanoplasty and I was like is this urgent? Because I'm afraid, if we patch up these holes, that the ear tubes left and then she needs ear tubes again. What have we accomplished, you know? And also, she just wrapped up surgery 17. Like, how many times am I? I'm just going to keep repeating that she just wrapped up surgery 17.

Speaker 4: 35:14

So if this isn't impairing her ability to hear and grow and be healthy, then let's just wait. And and he was like, okay, well, how long do you want to wait? I was like I don't know, but ideally at least a couple of years. And he was like, yeah, I mean, unless you show me symptoms in the last couple of years that make it so we have to move sooner, we can wait. And that was such a huge win for me, cause I was like, huh, that was a, that was good questioning Emily, cause we could have had her under anesthesia again, you know, this summer for her ears, when the doctor was like, well, I mean, yeah, if you want to wait, we can do that too.

Speaker 4: 35:53

Now there's a lot of surgeries you can't, or a lot of interventions you can't but that question is still worth asking, because then they can give you the reasons why it's important we do now, right I?

Speaker 3: 36:02

also think so. This is getting like more brass tacks. This is a lot more black and white. But another time that question can be really helpful is honestly evaluating where you are with your insurance. Have you met your deductible? Is this something like or does it make more sense? Can you wait and push? Is it like, is it maybe October or November and you've already reached your deductible? So okay, yes, let's go ahead and get it done, or you're already.

Speaker 3: 36:29

Maybe you've already met your deductible, but you know that. You know, pushing this to next year so you can knock your deductible out at the beginning of the year is actually going to be more beneficial to your family. And if there's time to wait, then that's okay to make decisions like that too, Because, as the advocate, as the parent and caregiver, we are treating not just the child, but you are. You are caring for your entire family collectively, because it's not just about our child, which, yes, they are the center of our focus, for sure. But it's okay to make decisions and ask questions because you realize the impact on everybody in your inner nucleus.

Speaker 4: 37:08

Yep, 100%. That was so well said. I don't have much to add to that. That's amazing, mike. Thank you very much. So, in terms of like, how to ask questions in a way that feels unabrasive I mean, some go to what are, some go to ways that you do it. I'm trying to think of ways. A lot of times I'll be like you know, help me understand this. Can you describe this in different terms? Or sometimes I'll be like okay, I heard you say XYZ. Can you put it in layman's terms?

Speaker 3: 37:40

Yes, or if you were telling me how simple can you explain this? Like I need kindergarten language.

Speaker 4: 37:47

Yeah, if you were talking to a kindergartner, how would you describe this? Draw pictures. That's a fantastic question to say. Will you draw me a picture of what you're describing so helpful when they draw pictures? What else? How do you do it so?

Speaker 3: 38:00

for people pleasers like myself or who struggle with that I like to use. Sometimes, you know, if I'm actually uncomfortable, like maybe it's a newer doctor or I just I don't maybe have the sense that there is open to questions, I like to do the sandwich sandwich strategy, which is where I'll start out with like a compliment be like you know, like I'm really happy with where we are at this point, but I am a little concerned about this. I know that this has gone well in the past, but can we address this concern that I have, or I'm just still not feeling comfortable with this, and can we explore this further? And I just think to it, just looking at it, as you guys are making it like your teammates. Right, if you talk to them like you are just as much of the teammate as they are, your jobs are both extremely important to your child's well being, then there really doesn't need to be that discomfort.

Speaker 3: 38:56

And I will say this is maybe a little bold but if you have a, if you have a doctor who, it's one thing, for sometimes, culturally, being asked questions isn't something that they're necessarily always used to, or maybe you know, it's just something that they need to work on themselves as being used to getting questions from parents. Right, that's okay to help them grow. But if you have a doctor who it is my way or the highway, I'm going to say it. If it all possible, it might not be a bad idea to hit the highway and see what else is available, because keep in mind that somebody who's not open to questions is often a more closed minded person in general, and if you're seeing that in your doctor, I would question not saying that they're not, but are they staying abreast of all the possibilities? Are they willing to go outside the box? Because, let's face it, a lot of our kids they do not fit inside a box.

Speaker 4: 39:56

There is no box shaped to fit them, which is what makes them so beautiful and so complex. Okay, I love what you're saying and I wholeheartedly agree. If you don't feel comfortable asking questions, then maybe you need to find a different provider, and that's really fine. You can even say like hey, you like, let's say, you're going to a specialist and they have five other people in the same clinic, right? Five other specialists that all do the same thing and you have one. Let's just use cardiology as an example. You have a cardiologist. There's five, five cardiologists on the team. You can approach the nurse or the nurse practitioner or whoever after the appointment and be like hey, I just don't know that I am how would you say it? Something like a biding. Yeah, we're just connecting. Great, is there another cardiologist I could be matched with? There's nothing wrong with that, that's so good. And any good cardiologist would be like yeah, we're not going to. I mean, no one person is going to be a good fit for everybody.

Speaker 3: 40:53

It's totally fine. Exactly, it's just like relationships, any type of relationship not everybody's meant to be friends, not everybody's meant to be married to. You know, like that's why you find your person right, that that fits you and your styles work well together.

Speaker 4: 41:08

Yeah, and I will say too, as far as Something I have had to learn and work on a lot, so I tend to be somebody who Explains away a lot of my questions or like not explains away, but like I will have a bunch of lead-up comments before I actually ask my question because I don't want to offend them, right? So so kind of like the sandwich approach, but I'll, I'll overdo it and I have learned Doctors have very short amount of time to spend with you. They have to get in, they have to get out and they have to be efficient. So you will have more success asking questions if you're efficient, and so I've had to learn.

Speaker 4: 41:47

Yeah, direct, get rid of all the couching. Like it's totally fine to do the sandwich approach, for sure, but don't overdo it Just be like yes, this is my question point blank.

Speaker 4: 41:55

You know, I've had to learn to just be super upfront and just be like. This is what I'm concerned about. Help me understand it. Another thing and this is a little bit of a side note, but I think it's so important the way we dress Impacts the way we show up, and so when we have appointment days, I dress as if I'm going into an office, like like a business office, not not suit, but like a nice top and jeans or a Nice up and, excuse me, a nice top, and like black pants or something, because I want to show up as the team member With this doctor who is in the white coat and the tie.

Speaker 4: 42:33

I'm not gonna show up in sweatpants and a raggedy shirt and Be able to step into the role that I know I need to do. Like it's a mental game, for sure, but it just helps me a lot. So if you find yourself trying to decide what to wear to your big appointment day, at least jeans, that's my suggestion. I mean in the hospital, obviously, whatever goes Tights, whatever, whatever keeps you clothed, it's cool, right like if you're hospitalized. But if you're an outpatient appointments, I'm all about At least putting on something that makes you feel confident.

Speaker 3: 43:05

Yes, absolutely, and that's for your benefit. Yes, if you feel better about yourself, you're going to feel more empowered, you're going to feel More courageous to to ask the questions that are needed. Right, you're not going to feel less than because that white coat syndrome is Always somewhat there. It's always, it's always present to a degree, I think, and that's just a pretty. It's a simple way to do it and you don't have to put in a ton of effort to do this, like if you're hearing this and you're like, oh my gosh, they're talking about getting dressed up for this event. No, it's just dressed up, just dress right. Yeah, exactly like. Maybe you know not the pajama bottoms, not the flannels, not the, you know the. If you're gonna wear yoga pants like athleisure is a thing then then just wear your nice ones. You're nice, I had matching set right.

Speaker 4: 43:52

Whatever makes you feel confident, that's what you need to wear. Like for me, you know, I might not actually put on makeup, but I'll just at least put on mascara, just because it makes me feel confident. Or, you know, it has nothing to do with the other people and and it's all about me showing up, or, you know, instead of wearing that hoodie that I really want to wear today, I'm gonna wear a nicer sweater.

Speaker 2: 44:14

Whatever it is.

Speaker 4: 44:15

It's just. I have noticed that has made a profound impact and I know that's a little bit of a deviation from our topic, but I think it's important because then, when you feel confident, you will step into the role of asking questions.

Speaker 3: 44:27

Could not agree more Well, I feel like this was a pretty good dive into this topic.

Speaker 4: 44:34

I think we gave you enough to chew for one week.

Speaker 3: 44:37

Yes, exactly, I would love, love, love to hear from our listeners about, like, give us some examples of what are some. You know, maybe some time that you've asked a question to a doctor, what's something that you're really proud of, that you push past your discomfort and ask questions. Or Maybe something really great came out of asking questions that others weren't asking and you know, don't be afraid to. You know, go against the flow, in a sense of it's okay to be thinking differently from what maybe Even you know other support families that you are connected to. If you're looking at things differently, that's okay, that's a good thing. That's how we expand and grow and improve in our health care and that's ultimately honestly right there. That, in the sum, is how we ended up in London with Emory having her.

Speaker 4: 45:28

Yeah, how do we get over that story?

Speaker 3: 45:30

Oh, I know. Well, I think we need to dedicate a whole episode to it.

Speaker 2: 45:33

We do honest.

Speaker 3: 45:34

Yeah, but Ask the questions that are in your gut and don't think twice about them. The only bad questions are the questions not asked, because they will haunt you, they will eat away at you and nobody's got more time for that, like we have enough things to worry about, don't ask. Don't add your unasked questions to the list.

Speaker 4: 45:55

Yes, and actually so. We had a phenomenal neonatologist when we were in the NICU and the very first thing he told me was exactly what you just said ask your questions, and the only bad question is the one you're not asking. And he actually happens to be on our board of advisors for Charlotte Tope Foundation and has been pivotal in our lives. But he he was my coach at the very beginning about Asking all the questions and I remember in rounds we would get to the end of rounds and you know they're throwing out terms. I have no idea what they're talking about and I'm taking notes as if I even know what I'm writing down. And then we get to the end and he's like okay, I can see you have a lot of questions hit me. Yeah, absolutely very rare and amazing, but I think what you said is so spot-on the only bad questions are the ones that don't get asked.

Speaker 3: 46:47

Yes.

Speaker 3: 46:48

I think, if there's anything that we want you to take away from today's episode Because we talked about a lot and hopefully you all picked up a lot of, you know, various tricks or things that could be helpful to you navigating your own journey but the two things are one. The only bad question right is the one not asked. So ask your questions, please, please, please. No matter what it is, no matter how silly or trivial it may seem or, you know, unreasonable even it may seem, just go for it. You will not regret it. You will only regret the ones you don't ask.

Speaker 3: 47:21

And then, after that, I would say the other thing that I hope, if you take away anything from this episode, it's that know that it is okay to hit the pause button and take time to get your questions answered. You do not have to be rushed. It is okay to say I need more time, or I need you to take the time to help me better understand this before I can move forward or make a decision. You have that right and that is the best thing for you and for your child. All right, I think that's it for today, as always. Thank you so much for joining us. We love you, we're thinking about you and we believe in you and we will talk to you next time.

Speaker 2: 48:02

You are capable, you are equipped and you are not alone.

Speaker 1: 48:06

Together, we can do hard things for our children if this episode connected with you and you want to hear more, be sure to hit the subscribe button.

Speaker 2: 48:14

We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlottehopefoundationorg. And, last but not least, if you know of someone who could benefit from this podcast, please share, and I hope it's bear.