Empowered by Hope
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at www.ParentEmpowermentNetwork.org.
Empowered by Hope
Navigating Post-Surgery Challenges Surgeons Don't Understand: Empowering Parents with Pracitcal Strategies
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How do you navigate the daily challenges of your child's post-surgery recovery when the experts can only provide clinical advice? Join us on Empowered by Hope as Emily and Ashlyn share their heartfelt journeys, illustrating the real-world struggles and triumphs of managing a child's medical condition, side effects and challenging realities after surgery. Regardless of the surgery type, we promise you’ll come away with practical strategies and clarity on who and where to get the help your child needs. You'll hear firsthand how other parents have built strong support circles and found the right professionals to guide them through different aspects of care.
Have you ever felt unsure about making critical decisions for your child’s health? We get it. Trusting your inner voice can be daunting, but as caregivers, we know our children best. In this episode, we underscore the power of intuition and being well-informed, helping you to confidently navigate your role as an advocate. We conclude with a powerful reminder of the collective strength and resilience within our community, encouraging you to share your stories and connect with others who understand. Tune in, be inspired, and remember: you are never alone on this journey.
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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
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.
Speaker 2:We're so glad you found us so together we can walk this journey in hope. Welcome to the Empowered by Hope podcast. This is Emily Whiting, here with my co-host, ashlyn Thompson, going with our new, updated format. We are going to dive right into our content today. Today's question we are going to tackle head-on is what do you do when your surgeon or your specialist either A doesn't know how to help advise you with living with the condition or the results of a surgery, or, b, they don't have the knowledge of how to help you with the recovery from that surgery? And we'll play with how to get that really concise question in the title. But the point is this is a burning question that has really been important in my journey with Charlotte and I know it has affected many of you listeners. It undoubtedly has, because as we navigate these really complex situations with our kiddos and we seek specialists' support, input, guidance, intervention they know what they know and there's a lot that's unknown.
Speaker 2:Right, and if I've learned anything, it's that medicine is just as much science as it is art, and so when you run into this challenge and we have run into it so many times we're going to our 20th procedure next week, so we are no rookies at this. How many times have I gone to a specialist or a surgeon? Okay, let's just use post-op as an example. It's post-op, we're recovering from whatever surgery it is, and I go to the surgeon trying to learn how to live with whatever result it is. Let's say I'm going to use the example of cleft lip. Right Now we have to syringe feed or we have to bottle feed, and my child won't take the food from that method. I would go back to the surgeon and ask for help, ask for support, ask for guidance, and often they can't give it. And this is not a dig on surgeons or specialists, but they're really good at what they're really good at. And then the practical how to live with it aspect is a whole different ballgame, and so I'm excited for Ashlyn to help kind of pull the right things out of me for this episode because, as you can tell, it's something I can get very fiery about.
Speaker 2:But if I've learned anything, it's that you don't stop when your surgeon or your specialist can't help you. You just start looking in other areas. So we're going to talk about three things that I've learned and continue to have to relearn. Like last week, I had to reteach myself and have Ashlyn and my husband coach me again about some really important things of this repeated experience where I often and I think many of you can relate I want validation from our specialists, from our surgeons, I want collaboration from them to help me figure out how to move forward at the lowest risk for my daughter, the best quality of life, and oftentimes I find that I come short in that.
Speaker 2:And so there's three things I've learned and continue to have to learn that we are going to share with you today, and the number one thing is that the surgeon or the specialist may not, and often will not, be the one who helps you figure out how to recover from that surgery or to live with the results of it. And I think that's a really important thing to know, and I have to remind myself this all the time because you think, oh, they're the one who specializes in this, surely they're going to know how to recover from the surgery, live with it, the practical aspects of it. But often that is not the case, and so often we have to look elsewhere for that kind of advice and guidance. Do you want to weigh in on that at all, ashlyn? I mean, it's pretty straightforward. The point one is that the surgeon or specialist may not be the one Right.
Speaker 1:I think that's going to be the case a lot of times. So I think if you're new to this journey, that is one thing. That is a big leg up, if you can walk into your journey not expecting your surgeon, slash specialist, to be the one to guide you through the realities of life, either with this condition or with this surgery. More specifically, not that they don't know what life can look like to an extent in broad terms, and what the statistics show, the average patient experiences, et cetera, et cetera. But they might be able to tell you a child will most likely do this. But what they can't tell you is, because your child will likely do this, then it will have this impact on your family as a result.
Speaker 1:You know, or your child may not be able to sleep at night. So how do you then live with having a family that does sleep at night but you can't, and then you have to live during regular day hours? How do we function? How do we? How do we function? How do we get my child to have healthy sleep? That may not be something that they're going to dive into, but we don't want this to sound like you know that's a bummer. I think what's important to realize is know your lane, know their lane and then find other people who are really good in the other lanes who can help you?
Speaker 1:Your surgeon, your specialist is just one very important piece of the support circle that you build around your child.
Speaker 2:And in my experience many of the specialists and surgeons are very grateful when you bring others to the table who know more of that lived experience, that practical. So a good example to help kind of bring this down to brass tacks is like if your child gets a stoma, does that surgeon often know how to bag a stoma? Not necessarily Do they know how to be able to take care of it the best. I mean, they can advise, sure, but are they going to know how to make sure it doesn't leak, how to prevent all the skin rashes, all those fun things? Probably not. They're going to know enough to get you started. And then you really got to go find somebody else, like a wound ostomy nurse or somebody who has a lot more experience with the, the, the stoma bags, to really help you with that. So that's the kind of thing we're talking about when we say how to do the lived experience of whatever it is that you're facing.
Speaker 2:So point number one is that the surgeon or the specialist may not be that person, and that's okay, that is okay. And that's something I have to remind myself a lot because I just assume they will be and then find myself very disappointed when they're not and my husband has to remind me multiple times like that's okay, it's okay. So then the next question is point number two. So who does right? Who does know how to help you with recovery from surgery or to help you with living with whatever the condition is? That's going to be the biggest chunk of time I have found, as the caregiver is finding the right person or persons who can help you.
Speaker 2:In my experience, it's often the senior nurses, the ones who have been around whatever that condition is the most and helping with the patients, that they are phenomenal. If there's a care coordinator who's really elbows deep with families with whatever condition we're talking about, they are phenomenal. Obviously, you can search for parent support groups. That's always really helpful. Where I find surgeons and specialists are phenomenal at is informing you of the risks versus benefits, the things you need to be aware of, things you need to be careful of, things that are coming down the pike, and then you can take that knowledge and go to others to find who can help you with navigating the realities of this challenge, whatever it is.
Speaker 1:Yeah, also really quick. Want to throw in that list, I think too, another one that maybe is a little more out of the box. Maybe it's not somebody who can deal with the actual like. You gave the great example of a, like an actual wound care nurse. But even looking to child life experts, yes, so helpful for an out-of-the-box person, somebody to give you that collaborative experience, to think, okay, how do we actually live with this? Well, maybe we can't find a way to improve the actual thing that is making life really hard. So what can we control? How can we empower our child to communicate about this? How can we empower ourselves as parents to make modifications to our child's life or our family's life, to improve what we can always ultimately seeking greatest quality of life?
Speaker 1:And I found that child life specialists are really really good in those conversations and often too, depending on the age of your child even younger than you'd probably think helping your child participate in conversations when it's appropriate.
Speaker 2:Yes, child life. I can't sing enough praises about them. They are absolutely phenomenal and oftentimes they might not have the answer, but they also know enough about the hospital system, different roles, that they can help point you in the right direction. I do often ask the surgeon before we have a surgery, or the specialist you know who on your team is equipped to help me with navigating the realities of XYZ. Sometimes they know, sometimes they don't, but it's a great question to ask. You can start there, because they're the ones you're already talking to. But also know, if they don't know, you don't have to stop there. Okay, so then point number three, and I think this is the most important. It is and I had to remind myself this last week when we had this repeat situation you know your child the best, right, and so if you go like, you don't need your surgeon's permission, and so if you go like, you don't need your surgeon's permission to be able to take a step in your child's care. Now, in no way am I saying you should do anything against the surgeon's advice. That's not what I'm saying. But often they will tell you, or the specialist will tell you risks, benefits, whatnot.
Speaker 2:I find and I'll just be really vulnerable here. I want them to say Emily, you should do X, you should try and do this. What I often want them to do, because Charlotte's so complex is to help me brainstorm like a controlled experiment to figure out how do I live with this and achieve best quality of life. And rarely is somebody going to do that with you. And so the bottom line I have to keep reminding myself is I'm capable of that. I know how to do a controlled experiment. The surgeons inform me about the risks versus benefits. It's really hard, because I want the validation of that doctor, to say, oh yeah, that's great, why don't we try it this way? Or to brainstorm with me. I want the collaboration, I want to feel like the weight of the decision and the risk is not on me, just speaking candid. But oftentimes the reality is the weight is on me, the results and the risk is on me. But I'm also educated enough to do it wisely, to do it smart, to involve my husband, to talk about it with whoever it is I've determined in point.
Speaker 2:Number two could be helpful, whether it's that care coordinator, the senior nurse, bounce ideas off them, and so the bottom line is you have the power to figure out how to live with whatever condition you're facing or post-op recovery, and you are capable and you know your child best.
Speaker 2:So there's a couple situations that I could give as examples of the last couple weeks where I felt like my hands were tied and I couldn't do anything because I didn't get the guidance or the permission I was seeking from the specialist. And my husband and Ashlyn so gently reminded me yes, you do and yes you can, and of course a specialist and a surgeon is going to be grateful that I took that initiative to run with it right. But at the end that's up to me to figure it out. So there's a few things, like in Charlotte's situation, where I know her quality of life could improve if we can trial and error, a few things to figure it out. So really the bottom line is I have to figure out what are the risks we're willing to take and what are the possible outcomes of them and then take it one step at a time.
Speaker 2:So, yeah, go ahead, Ashlyn. I feel like I'm on a roll.
Speaker 1:You are on a roll, emily. I think you've done a great job of laying out the three things that we wanted to get across this appointment and I just want to add here you know, with this last point about you know your child best. With that Also, this is an opportunity You're going to have lots of opportunities for this life lesson to go through in which you can only make the best decision you can with the information you have at the time, that you have it right with, with what you have available to you, with what you have available to you. And it can feel so scary and so overwhelming and, frankly, at times paralyzing to make that type of a decision for somebody else's well-being, not to mention the person that you love with your entire being.
Speaker 1:But there comes a time where that inner voice, that intuition, that is something to lean into and I recommend practice listening to that in small ways. First, you have somebody ask you what you want to eat. If you do actually think of something immediately, but you're used to being the person that's like, oh well, what's, whatever's fine or what'd you have in mind, because you're always trying to be nice and gracious actually speak to the first thing that comes in mind. That's probably sounds really silly, but it's a way to start reinforcing. You have that inner voice and you respect it and it's something you can trust and then you can let that inner voice grow and get stronger and then it gets a little bit easier to make those decisions with confidence and if not with confidence then at least with peace. And that's a part of our growth that we experienced as advocates. So listen to that inner voice. You know your child more than anybody. We promise we trust that fully. And whether you are mom, dad, a grandparent, a sibling, whoever it is, if you love this child enough to be a very involved caregiver and advocate for them, then you know them and you can trust that voice. And you don't have to have somebody validating every single decision within means Obviously we're never talking about specific medical advice here means obviously we're never talking about specific medical advice here. But if you just have that gut feeling that will not go away, listen to it, trust it. And if it's a decision that doesn't have an absolutely permanent outcome, listen to it even more, because sometimes we paralyze ourselves with that fear that if I make this decision or this choice then it's all over ourselves, with that fear that if I make this decision or this choice, then it's all over, it's all ruined.
Speaker 1:I tend to have that fatalistic you know thinking go through my head sometimes, where you know it's like letting Emory go in the lake. What if she gets a UTI? Oh my gosh, and what if it turns into a kidney infection? And then what if it turns into an ongoing onslaught of infection? Well, if she goes in the lake and if she does get an infection, then we will treat it. It's not absolutely irreversible. Might it be a little bumpy for a while, yes, but just letting yourself make some of those decisions, because you just have that feeling and you know what your child needs to live a fulfilling life. That's a beautiful gift that you have, that you share with your child, and we just want to be here to encourage you because, like you said at the beginning, emily, you can do this.
Speaker 2:Yeah.
Speaker 1:Totally believe in you and we want you to believe in yourself.
Speaker 2:And I also want to say to anyone out there who may be feeling the crushing weight of that responsibility, like I've been feeling the last couple of weeks First off, we feel it with you. We are so sorry you having to carry the weight of this. It is a lot of weight, like you said so well, ashlyn, to be the one who is making decisions for someone else, and not just anyone else, but the person you love the most, right? And yet we have to keep coming back to the points you've made, that we do what we can with the knowledge we have at the time we're making that decision. You said it better, but you get the point. We're making the best informed decisions we can. We're taking the information we're getting from their surgeons and our specialists. We're not dismissing it by any means, but then we're adding to it. We're saying, okay, knowing that, what can we do to allow our child to thrive the best possible within, sometimes, circumstances that are very unwanted, right? I think you put it really well.
Speaker 2:Sometimes we have to handle undesirable outcomes of necessary procedures or necessary treatments or just the reality of whatever condition we're facing, and so I just want to see you there if you're feeling overwhelmed by that weight and hold you in the midst of that whelm and tell you keep breathing through it and you can make these decisions and I'm making them too right here in the really what feels secluded household of our own home. But we are not alone, and neither are you. So bottom line is you know, when you're faced with a surgery or a condition and you are trying to figure out how to handle recovery and or living with that condition, condition, the three things that we said are that the surgeon may not, or the specialist may not be the one who is going to help you with those things, with the recovery and how to live with it from a practical standpoint. So point number two you got to find who does. Who knows.
Speaker 1:I keep thinking of the Ariana Grande song Thank you Next Like thank you, appreciate it. You can help me on to the next, and then you just keep doing it until you get to the right person.
Speaker 2:And I love that attitude because that gets to like it's nobody's fault. We're just going to the next one.
Speaker 1:We all have our roles.
Speaker 2:Who else can feed into this situation and help us out? Right, I love it. And then point number three is that you do know your child best. You don't need a surgeon's permission to make medical decisions, or a specialist to make medical decisions for your child Obviously never dismissing what they're saying, being well-informed, but taking the ownership to know that you do not need validation as their parent or their caregiver. You know them best. You can make informed decisions and handle the outcomes right, absolutely All right.
Speaker 1:Well, with that, that's our first episode in our new format. We're really, really curious to hear what you think about this. So please, please, if you felt like this episode was helpful to you, we would be so grateful if you would consider leaving a quick review on whatever platform that you listen to this podcast. It's our goal to be available to as many caregivers, families as possible and help them on their journeys. So when they see stars or comments on however you feel that helps them know if this is the right show for them. So interact with us on social media this week or anytime you're listening to this episode really, and we would love to hear from you. Maybe let us know who have you found that has been able to help you live with outcomes of surgeries or realities of diagnoses that maybe the medical specialist, the surgeon themselves, couldn't help you with. Curious what your experiences have been. All right.
Speaker 2:We'll see you all next week. Bye, you are capable, you are equipped and you are not alone.
Speaker 1: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:We would also love to learn about your personal journey and how we can support you.
Speaker 1:Reach out to us at contact at charlotteshopefoundationorg.
Speaker 2:And last but not least, if you know of someone who could benefit from this podcast, please share. Hope is Bear.
