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
Preparing for Your Child’s Surgery: Practical Tips, Emotional Support & Shared Personal Experiences to Feel More Confident About Surgery Prep
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Preparing for your child's surgery can be an overwhelming experience, but there's hope and strength to be found in each other's stories. Join us, Emily and Ashlyn, as we share personal experiences and practical tips on navigating this challenging journey, from mental and emotional preparations to taking care of ourselves and our children during the process. Discover how we've celebrated post-surgery victories and the milestones our children have achieved in their recovery.
Listen in as we explore the invaluable role of child life specialists, the importance of pain management plans, and the support and wisdom to be found in connecting with other families facing similar challenges. We'll also discuss how to approach discussions with your partner and prepare for the unexpected, as well as stocking up on essentials and addressing the surgery with your child.
Throughout this episode, we'll emphasize the significance of living in the present and focusing on each step of the journey. By the end of our conversation, you'll gain insight into the practical aspects of surgery preparation and post-operative recovery, the emotional and mental aspects of facing this challenging time, and the incredible support that can be found in connecting with others who truly understand.
We hope our experiences and advice will bring comfort and encouragement to you and your family as you prepare for and navigate your child's surgery and recovery.
We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.
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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:Welcome back to the empowered by hope podcast. You have both your co-host with you today, and we were laughing before we hit record. This is Emily and Ashlyn. We both sound a bit froggy.
Speaker 3:It is bright and early in the morning. If you've been listening for a while now, you know that we usually have to try to crank out episodes at very random times because of kids and schedules and sickness and surgeries and all the things, and so it is bright and early this morning and I'm nursing my coffee and Ms Ashlyn is going on what feels like months of sickness. I think that's accurate. We kept putting off recording to help your voice recover, and then, finally, we were like, well, everybody's just going to get you know, it just is what it is. We were up last night with a vomiting, fevering baby, so you know, it's all just normal part of the deal. So we're very happy to be with you, though, and I mean that with all sincerity, because we always love recording these episodes.
Speaker 3:I always find it to be so invigorating, and what we're going to talk about today is actually surgery prep, and you know things to think about as you're preparing for surgery If you know that you're about to go into surgery with your little one And it's just going to be kind of an off the cuff conversation because Ashlyn just came off of a huge surgery and I'm about to head into a. I'm not even sure if it's huge, i don't know. It's giving me a lot of angst. Whether it's huge or not, it'll be our 17th. All surgery is big.
Speaker 4:All surgery is big And it's okay, like this is one of those things to me too. Oh, by the way, good morning everyone. Obviously Ashlyn here, but yes, just jumping in really quick. I think all surgery should be considered big, because anytime you are taking your child back and they have to be going under anesthesia, let's face it, it's a big deal for us, it's a big deal for our child, and so trying to minimize it based on how long recovery is going to be like nobody has to play that game. This isn't able when my situation is bigger than yours or smaller than yours. It's just. Surgery is not fun, nobody likes it, and we just do our best to get through it and make it as smooth as an unsmooth process can be.
Speaker 4:So, yeah, well said That's what we're going to talk about today. I am super happy to be back. I actually feel like I'm really back. Yes, i've been in the States for a couple of weeks now, but I'm like Ashlyn is here minus my voice And the exciting thing is Emery is doing so so well, to the point that I'm more focused now on remembering how to parent a new two year old, because we are definitely in the twos and you know that magical, mystifying, confusing, awesome time of life when they're learning lots of things but their brain also goes really, hey, why are it times with all those things?
Speaker 4:But it's so nice to be focused on. You know that word that we dream of. You know typical things, right, like you know just standard developmental milestones that we're trying to achieve and support our children. So she's rocking and rolling. There's a lot of positive signs post surgery that indicate a good likelihood or a higher likelihood of success. We will not know for certain. Honestly, like the earliest we would really know is when we start potty training.
Speaker 4:But I will say, like it was the coolest thing, she's done it twice this week where she has taken her diaper off on her own and we have a little like baby shark potty, practice potty in the bathroom. Shout out to all of you who have lost multiple brain cells to seeking baby shark a million times. Anyway, emery has run to the bathroom twice, taken off her diaper and sat on the potty and she's actually gone a little bit twice Like, and then when she stood up and like walked away. Then she went a lot both times afterwards. But the exciting thing is is that she obviously is like to me.
Speaker 4:I'm 98% sure that she's actually feeling the sensation which she never felt pre-surgery, which is a part of the reason she needed the surgery. Right, she had no feeling because her bladder never got to the point of a full capacity to realize oh, it's time to empty, so I need to do something about it. So we don't know for sure. She could also just be you know, she's two and she's seeing other people go into the bathroom, but regardless, i'm counting it as a win. Those are huge successes.
Speaker 3:So proud of her. I'm so happy and so relieved, not also from a cognitive development, not that that's ever been a question, but, you know, for those of you listening who are wondering if you're going to hit that milestone with your child of the cognitive development, of that, that's huge.
Speaker 3:The fact that, whether she, since you know, had the sensation of she had to pee or not, she knew bathroom is where we go and I sit on the potty and then she clearly was trying to void, because if she stood up and walked away and then voided, like then you know that she, she had that idea, she knew that was something you were supposed to do on the potty. So that is amazing And it is.
Speaker 4:Wow, yes, it is, i know, and I think part of it is second child. There's something you know that's an added benefit, but it's funny you saying that like it's so true that that's a big deal. And I don't know if you ever play this mental game with yourself, emily, but I have found myself. You know I provided a lot of updates pre-surgery, during surgery and, like you know, during the rough recovery parts, right, but now that we're home she's doing well.
Speaker 4:I've found myself like I know what I'm actually doing is I'm holding back, like making you know, like sharing some big news about how great she's doing. Because it's like this silly voice inside of me is scared to challenge life and say like, look how great she's doing, things are all positive. Because it's like I'm holding my breath like oh, my gosh, what if I say something and then the bottom falls out or the other shoe falls off? And I think that's a little bit of what I call trauma brain maybe is sneaking around in there And I hadn't really thought about it until you put it that out, because I realized I'm noticing the wins but I'm not fully acknowledging them, because there's this part of me that's like oh, but what if it's?
Speaker 4:like is it too soon to say this? Is it too soon to claim success? Right, like I don't want to, you know, jinx anything but 99%. sure, i can't actually do that, but I'm glad we're talking this out because it's making me wonder, it makes you wonder Right, which we've fallen in a lot of times and you know that all too well. You're in like the what 0.2%, 0.02%, charlotte.
Speaker 3:I've lost track of the math. I don't know. It's insane. Well, you know what It's funny? you say that because so, Charlotte. So we just did a news TV segment yesterday. It's on news channel five Cleveland and you can look it up.
Speaker 4:I have to find out the exact website to tell you, i think we shared it on our social media too, like from our Facebook page.
Speaker 3:Yeah, we did. And in that clip Charlotte's swinging and I was telling the news reporter this is a very, very big deal because for the last several years she's had so much pain in swinging, amplifies it and she loves to swing, but she can't swing for very long, sometimes not even for like 20 seconds without it causing a lot of pain. So is like the fact that we've been having you know swinging for 10 minutes during this clip is astounding.
Speaker 3:But i'm thinking in the back of my mind. You know, i haven't actually really acknowledged that, or even the fact that we can talk her in and she only cries about paying for about five minutes every night, rather than two hours, like she used to really stop to acknowledge that for the exact same reason and i know it's silly, we don't believe in jinxing, we don't believe in, you know, but it still is like You're just hesitant to claim that when, because it's like well, i don't know, you know the other day started crying that are back hurt again, and of course, then my blood, my blood, my brain, floods Like what does this mean? and maybe we haven't actually had success and you know all the things which are all fair thoughts, but yeah, i think that's a definitely Something that it's hard to know when to really just you know, and but on the other hand, like as i'm saying this and i listen to you, i'm thinking why not celebrate the winds? because if tomorrow the winds go away, well, at least we got one day of celebration, you know.
Speaker 4:Right and that's so true. I think it's something that i know. Just i'm just talking about this out loud right now. This is obviously off the cuff, as you said it like. This is really helping me Just remember to. Sometimes you have to actively search for perspective. You have to be mindful about holding onto perspective because in this life i feel like it is so easy to You help me realize i was doing this words like you're so used to having to find a solution. Look for the problem, dive into it, make something better than it is. You're always problem solving that when you hit a point, a sweet point, i'll be it. You know, no matter how short it is, it can be really hard to be in that moment of things being good because You're so used to being, you know, ready to jump at any second.
Speaker 4:That is like okay, this is time to take a breath. Oh, this must be when my therapist talks to me so much about mindful breathing, like taking time to just breathe. Starting to click now. Okay, thank you for that. I'll have to let my therapist know that i won't be seeing her as often, just gonna talk to you.
Speaker 3:I will everything you're saying i need to do better. i find myself holding my breath and by the end of the day i'm like why does my chest hurt?
Speaker 4:Right, well, this actually is a very good segue into. I think this means we could probably dive into pre surgery prep, because i would say That working on mindfulness, while it might not be your child, is something to start working on for yourself, mom's, dad's, grandparents, whoever's going to be involved in surgery, because These moments in life have this, have this ability, this power to just grab a hold of you and throw you.
Speaker 4:Over a building yes, take a hold of you and take you on a ride. You don't want to go on and one of the easier, more simple ways to Help combat that. It's almost maddening in a sense to me because i know that i fight. It Is just taking a couple like, even if it's 30 seconds, if that's all you have to remind yourself a couple times a day, to just okay, i'm just going to take a second to be still and i'm going to only think about my breathing for 30 seconds, so that way i have oxygen in my head And can you know, maybe bring that blood pressure down a little bit and get my head back in the game yeah, the quote that comes to mind Is be still and know that i am god for those of you out there who are listening, who are a faith.
Speaker 3:I think that that has always been a huge. I just always been. It's meant so much to me and i'm not good at being still.
Speaker 4:She is not, i can contest.
Speaker 3:she is not Where i test, not contest yeah, so that's a that's very, a very helpful like, okay, be still remind yourself. You, emily, whiting, are not god, you're not going to fix it.
Speaker 4:You can collaborate, but it's not up to you, so take chill pill child right now if you're heading into pre surgery prep, seriously, this might i know this probably seems really small and trivial and not important, but set a time, set a daily alarm to go off at a time that like, just pick a time that may or may not work for you consistently. I remember for me, leading up to surgery, i picked seven o'clock at night and that was when i would force myself to take like up to a minute, maybe two minutes of just okay, just center myself, breathe.
Speaker 4:Usually, you know, give it to god was usually, you know, my mantra, whatever, just let it go but Just having that daily reminder, you'd be amazed how how much of an impact that makes on your brains way of thinking about things. So little tricks. So set your alarm right now. Please, please, please, just give it a try.
Speaker 3:Okay, that's a fantastic idea. I love it. So really quick back to what we were talking about, because i think this is so beautiful, because our kids Live in the moment, whether it's the pain or the joy, and i so admire that. So back to the swing situation. Charlotte, when she gets on the swing and she gets on the swing every day and you would think for how much it hurts her she would just give up the swing. But not that girl. She's like i'm gonna swing and if it hurts i'll get off, but otherwise i'm gonna swing. So is when she gets on now, if it doesn't hurt, she starts bell ring at the top of her lungs pain.
Speaker 4:Oh my gosh, okay, everybody out in the world who just heard that didn't melt instantly where they are, then I would challenge if you're human, that is so sweet, bittersweet, let's be honest, like, but that is, let's focus on the wind, right? that is amazing, yeah, yeah and i mean it.
Speaker 3:I think we can learn from her that she's not sitting there like, oh, i'm just gonna wait for the pain to come. She's nope, she's all in, i'm pain free. It's not free, it's Surgery prep. Okay, so we are going into our 17th surgery. Well, it's not our 17th surgery, it's our 17th procedure. There's been like five of those in the 17 that have not technically been a surgery, but they all have been either the OR or the IR, which is intervention radiology. They all require anesthesia, they all require recovery time, and so there it is. And then, of course, we've had I don't know at least probably five to ten anesthesias beyond those 17 for testing and whatnot, and I'm sure many of you on this podcast can relate to just the never ending anesthesia recovery battle.
Speaker 3:So we have put together a surgery prepless and it is not all encompassing, but it does just help you start to think about things that you can control, because there's so much you can't control. You know, like, as I'm going into this surgery, like I said, i don't really know what to expect for post-op recovery, despite my research, because it's kind of a unique surgery. There's not too many people, i mean, it's not terribly unique, but the way they're going to have to do it and the result of it is a bit unique from normal ostomies. So you know, i've joined an ostomy support group and I've, you know, searched on Facebook and I've called the wound ostomy nurse and we have an appointment next week to talk about things And I've reached out to a couple parents but I still don't really have a clear picture of what recovery is going to look like for this particular surgery. I see you chomping at the bit What Ms Ashland.
Speaker 4:I just want to slow you down because so, backing up really quickly, yes, emily, literally you did say 17th procedure, slash surgery, with even more times under anesthesia beyond that. So, yes, people, you did hear that correctly, because that is not a typical normal, especially for somebody who is age five. Well, because of that, one of the things that you and I talk about a lot, because I'm like you know, emory's been under anesthesia four times, which feels like a lot, still a lot for two Still a drop in the bucket, correct, but still a drop in the bucket comparatively.
Speaker 4:But I want to slow you down because, because you are, you know, a I always I need to really look this up, because I always say whatever is like three levels beyond a black belt. I need to find out what that actually is so I can say it correctly. Does it exist? I don't know.
Speaker 4:I'm pretty sure I think so, but that is what you are. So I think sometimes you move so quickly past what you have to offer And I just want to step like I want to just back up a little bit and point out like how brilliant it is And like something that I learned from you is not only did you join groups right that support groups of people who have hopefully been through a similar surgery to get real life experience from those parents, because it's so easy to ask the doctors you know what's it going to look like, and let's just call it how it is for surgery prep. Your doctor is not going to cut it to tell you what it's going to be like. They are truly not capable of giving you the real, real on what recovery is going to be like Recovery exactly.
Speaker 3:Not. Yeah, from the and you know, from like a physical standpoint, they're going to be great to tell you this how many days in the hospital you know this is. You know, we'll send you home with X amount of meds for a week or two, blah, blah, blah, and we'll have a follow up at this point and we'll pull the stint at this point, like that's all great And that's helpful, but that's not what I mean about recovery. What I'm talking about is how grueling is it going to be? Is she going to eat? Are we going to be writhing in pain for weeks Or is it going to be like two days? Are we going to have wound care that we're going to need? Are we going to have skin breakdown? Are we going to have medic medication, like withdrawal from different opioids that we needed to use? That's what I'm talking about And that's where you really need to talk to somebody who has dealt with the recovery for that particular surgery to understand that, because a surgeon is fantastic at what they do And that is the surgery and we need them to be fantastic at that.
Speaker 3:But by procedure 17, i have learned. Now there's the rare one who might know more about the reality of recovery. But most times the surgeon is not going to be the one who's going to give you that insight to help you really prepare for, like, do I need special pads at home to absorb whatever leakage we have going on? and do I, you know that kind of stuff Like, am I going to need a special feeding system? like that's just not going to be something you get from the surgeon, and that's okay because the surgeon is going to make it work from a plumbing standpoint Fantastic, right. And then you have to find somebody else who's great at helping the kid survive mentally and physically, you know, and emotionally, right.
Speaker 4:So I just want to really quickly.
Speaker 4:I want to add to that This is something that I learned from my recent experience with embryo surgery.
Speaker 4:Right, surgeon gave us the spiel of what things would be like, and I did talk to some parents And one of the things that it could be really common when you go to a parent support group or family support group And yes, it is very true You know they'll say like well, you know, every kid is different, right, and you have to leave room for that to understand every child is different.
Speaker 4:So don't go into it expecting that what you know this group of families told you their experience was like like it's okay. I think it's better to expect that your situation may not be the exact same, but for anybody, if you're having a procedure that say, like, if you're having trouble connecting with other people who've gone through it with their child because that's a possibility as well you don't know how to connect or you know you haven't found anybody. What I wish I had known to do before this last surgery and I will do for any other procedures, should they come up is ask I want to be connected to one of the experienced nurses who helps on that on that recovery floor. I would like to have an opportunity to speak with them even if it's for 20 minutes, and be insistent about it.
Speaker 4:Because, let me tell you, folks, what I was told by not only our surgeon but also by the pain management team was very different from what I was told by the experienced nurses once things started happening. Because, you know, you said do I need to be prepared for like weeks of being in pain, or is it the first couple days? Well, i just assumed that it was going to be like our first surgery, right, where, like the first few days were I'm sorry, it was hell, it was terrifying, it was awful, there was no pain management. So I just expected, okay, we just have to get through those first few days. And then after that, i thought it was going to be just this, all right, it'll be just a gradual incline to getting better, right, it'll just continue to get better from there.
Speaker 4:Well, nope, that's completely the opposite in this case, because the epidural she had which, like this, was a huge blessing, emery's first epidural and her first surgery was not successful. It only covered part of the area that the surgery affected. So she was in too much pain. Well, this one they did a fantastic job of placing, so good that she literally had next, once they upped their to the right dose after surgery, she literally had basically almost no pain for the first three days. And then on day four, when they started decreasing the epidural, like I was expecting some pain, some discomfort sure, oh my gosh, we were on the highway to hell after that And I was so caught off guard And I remember I always pray for God to give us the right nurse that we need at the right time, and he really really provided.
Speaker 4:And so the nurses we had, i mean they got us through those, but they're, like you know, we really wish the doctors could understand like to not tell parents that it's going to be so manageable or so easy, because things like bladder spasms are so hard to control, because standard pain medication like morphine does absolutely nothing for bladder spasms. It doesn't diminish the pain whatsoever, you know. And so you're really limited in how you can help a child through that, and some children they are far more intense than others And so just getting that reality dose from them it helped me to realize, okay, we're not in some unique awful situation Apparently. This is a common awful situation which can give you more anxiety when you think things are so much worse for your child than others. Right, yes, yes absolutely.
Speaker 3:I think that's so. Oh my gosh. I'm making notes because, like I said, this is happening for us in two weeks And you know, it's funny too. So I have tried to get this information much sooner than now. And how do I want to say this? It's interesting, And I get it, because our medical system is so bogged down and so backed up. But I'm trying to call ahead any sooner than two weeks for a procedure to get this kind of information. You can just sense the reaction of the medical staff being like we'll talk to you then And I'm going like no, I need it now, Not that.
Speaker 3:Good for you. So anyway, yeah, that's been an interesting battle, but yeah, so one thing this was a good reminder to me for and I don't think this is going to be the case for everybody and their child, i think for Ashlyn and my experience we have had a lot of trouble with post-op pain management And that's not always the case. In our case it very much is For us opioids they often try to avoid because we have GI issues and opioids slow down the GI tract. We also have kidney disease. We also have liver disease. All pain meds are processed through the liver and through the kidney, so we also have to be very careful because we have high blood pressure And we have not long QT syndrome, but we do have prolonged QT, which basically means we have to avoid a certain class of medications that would cause issues with the heart.
Speaker 4:You know what picture just came to mind?
Speaker 3:There's nothing left to give her?
Speaker 4:Yes, well, there's, but also, like I'm just thinking of, there's this movie read on Netflix and it's all. It's where Ryan Reynolds is like a like this big time you know high priority thief or whatever but it shows him like trying to break in and get something. I don't even remember what it is he's trying to get, but it's like all the lasers and stuff are set up right for like security And he has to like maneuver his body all these crazy ways to try to get to we'll call it the prize And I'm like that must be what it's like.
Speaker 4:Trying to get to what Charlotte needs Yes, Trying to go through like an entire labyrinth of all these crazy lasers that you touch one, everything goes off.
Speaker 3:Truth, oh my gosh. Yes, and once you get behind on pain, it is so hard to catch back up. Yes, so, anyway, this is reminding me to reach out to our surgeon and ask if we can have a little pow-wow about our pain management plan prior to the morning of surgery, because at that point my head is thinking about a million things and it's hard to remember exactly all the things that we need to discuss from post-op pain management. Do you have your surgeon's cell phone number?
Speaker 4:Not yet, but I will Make sure I can't say that every surgeon out there is going to agree to this everybody, But I'm going to put out there that We're going to make calls from surgeons and like stop saying that. Well, I mean, it doesn't hurt to at least ask They can tell you no. But if they say yes, it can be invaluable, It can yes, for sure.
Speaker 3:Okay, So from a very basic So those are more like things that are heavy on our minds is pain management, But, from a basic standpoint, things you can control. For pre-op, i think obviously some of the low hanging fruit is like do you have childcare for your other kids? Do you have family members scheduled to come help after you come home from surgery To either play with the other kids or to give you a break so you can go take a walk or whatever that looks like? And the biggest thing I think to keep in mind is this is not the time to be hesitant to ask or say yes to help. So and actually I'm preaching to the choir here because my brother right now actually has offered to come to help the week after we get back from the hospital. So we're going to be in the hospital for a week and then we're going to be.
Speaker 3:Now that I say this out loud, i guess it is going to be a pretty darn big recovery. Maybe I've just been in denial when in fact I do know what recovery is going to be like and I just don't want to deal with it, but we have to be back to the hospital for the following two to three weeks to remove drains and stints and whatnot all the fun things. So he offered he lives across the United States and like 11 hour drive away, and he offered to come and spend a few days in the area so that he could help. And I had been hesitant to take him up on that because I was like, well, i don't know if I'll really need that or not, i'm not sure. But y'all, i'm going to take my own advice and I'm going to say yes And even if we don't quote need that added help, it'll be such an emotional relief to just have the different face and somebody there to break up the trauma of it all. So I'm All right.
Speaker 4:And your other kids too. I think you'll All three of them will. I mean, it'll be kind of like a I don't know.
Speaker 3:Like that's a fun. It'll be very fun, uncle.
Speaker 4:Yeah, our uncle will be here. Just a fun experience, exactly. And I think that it's not all on you to give all the attention to everybody, because you're going to be spent Exactly.
Speaker 3:So let this be a lesson to us all When someone offers to help, the answer is yes, And this has been a very good reminder to me as I preach it to you. So yeah, I think those are some small things. And if somebody says can I set up a meal train, Your answer is yes. If somebody says do you want me to come feed your dog? Yes. Do you need me to get groceries? Yes.
Speaker 4:I think I'm even going to be bold and throw out a challenge here, something that I've never done, and I think there's a way to do it. Folks So many people often are so happy to help in this situation. One because they care about you, they love you, and also, a lot of times it's just people can't even begin to imagine what you're dealing with and they just feel compelled to help, but they don't offer help because they don't even know where to start. So I'm going to put this out there as a challenge. I probably would have a hard time still doing it, but I think I might try it in the future Is literally like share with friends or something. If you have a caring bridge or you have like a group of people you keep informed, just be like hey, we have this coming up.
Speaker 4:In the past, people have always asked how they could help. If anybody would like to schedule some play dates with my other kids, we would be more than happy to accept them or whatever, even if it's something small, or like if somebody nearby wouldn't mind taking the dog for a walk, we would be so grateful. Or we're going to be away from home for a week or two, it would be so helpful if you know, if neighbor X or Y, if you guys wouldn't mind mowing our grass so that way it doesn't look like a jungle when we come back. It's okay to ask for it as well, which, like even I feel my skin crawling a little bit now because I'm like that's so hard to do, but I think there's so many people who, truthfully, they are just waiting for that, and I think maybe a way to help it feel less skin crawly is if, like, if you know, yeah, these are the three areas.
Speaker 3:I'm probably going to need help And when somebody says, how can I help, you can just pull up that list and be like these are the three things that I really could use. So if one of those gets you excited, awesome, and if not, that's totally fine. You know, but everybody's going to jump at that. Everybody's going to be so grateful to have something to do, especially if they're offering. You know, and people will quickly learn in your world, if they're going to offer, they better actually mean it because you're going to take them up on it. Yes, that has been. Yeah, i think people have learned in my world like, yeah, don't offer it if you don't mean it, because I'm going to say yes, which is good, and everybody, of course, offers and they're phenomenal. So, yeah, i think that's great And we're going to put out a list with these show notes of things to think about so that you can kind of pull ideas from that and be like here's a few things I know I could use help with.
Speaker 3:Another thing is often from a, you know, just clinical standpoint. You do usually need a appointment with a pediatrician or somebody who can give you a clearance for surgery. It's basically like a physical not for every surgery, but for many, and so either you need a separate appointment with your primary care doc to do that Or, you know, oftentimes I'll just try to get whoever whatever specialists we're seeing to be like Hey, can you fill out this form and do all the necessary things to make sure she's good for surgery? Like there's no reason why the cardiologist can't, you know, make sure she's good for surgery. Right, and I'm not adding another.
Speaker 3:I will not add another appointment just to get cleared for surgery when we see about 30 other people that same month right before surgery. So you know, if you need to just get creative on how to do that, you can, but it's something you don't want to forget because then the day of if that doesn't happen, you know some hospitals, depending on the surgery, we'll be like I don't know if we can actually do the surgery now And you're going to want to know from your hospital or your surgeon do we need a COVID test beforehand? Do we need blood work first? You know that kind of stuff And usually it's on them to tell you that, but it's just good to know to ask those questions in pre-op appointments.
Speaker 4:I would say I agree with that And I think a lot of times they will schedule your surgeon That'll be a part of, like, your pre-op appointment.
Speaker 4:I think that happens a lot of the time.
Speaker 4:But I would recommend, even if your surgeon, you know, tells you that you're going to have to schedule a preop appointment with them before that clearance, if you haven't had surgery with them before or you don't know what you're going into, just ask what's going to be included in that preop, because I was assuming that once again, assumptions not the best fall back for what things are going to be like.
Speaker 4:I just, when Emery was a baby, preop didn't really include very much, but as a two-year-old I didn't realize that preop was going to include a urine sample and a blood draw And I just was so surprised which looking back, is probably pretty silly, but I just wasn't thinking about it And so mentally I remember I kind of had a freak out. I was like she's never had blood taken while she's awake or without an IV. That's already in that they could pull from. And then urine samples have been really traumatic in the past but they handled it great And I just think I would have been and I would have felt better and had less angst through that, had I thought to ask okay, what does preop look like for my child at this age, for this surgery, and if?
Speaker 3:you need to use specific words. You can say are there labs required? Because that'll encompass basically anything that they might need to take from your child, whether it be urine or blood or whatever. Yeah, and that's really good advice, because while it might feel routine to the medical staff and it is it's not routine for your child. Well, for some of the kids it is, but for some of them it's not, and so that can be very trauma inducing And you haven't even gotten to the trauma part yet. You know you haven't even gotten to the surgery yet.
Speaker 3:So if you can just get ahead of those things and be able to tell Emory, hey, we're going to get an owie in our arm And it's going to, you know, some blood's going to come out and it's going to be really cool to watch, but it is going to hurt, you know, and I'm going to hold you close, whatever.
Speaker 3:It's prepping her, you know, and prepping you to know that I'm not throwing this curveball at my kid and then we're all going to freak out. That's so, so helpful, right, the other thing you can ask for which, again, i'm making a note, this is a very helpful episode for me, very timely to ask for child life. Child life is a phenomenal. I don't know if you call them specialty or department department. I guess within hospitals They are people who are specially trained in how to help kids navigate medical procedures and they are phenomenal at it. They're great at distraction techniques. They're great at helping the parent feel a little bit better. They're phenomenal at helping the kid, you know, be a part of the medical procedure rather than just like being exactly Yes.
Speaker 3:So, like a lot of times, they'll come in with you know, coloring books that help describe exactly what they're about to be doing, or they'll bring in dolls and have the kid do whatever it is that's going to happen to the doll first to learn, and that kind of stuff. It's brilliant, but it's not a guarantee that you get child life and sometimes the key is you have to actually know to ask for child life. So that is a really good thing to remember and I'm writing it down to make sure in our pre-op appointment, which I still need.
Speaker 4:And that's for pre-op, to schedule it and like you can actually ask them to be a part of your pre-op appointment and then, but just confirm, yes, we did that, We were able to do that last time And then we were also like what I didn't understand is I could ask for post thought or for play they called them play specialists in England, but child life specialists here in the United States is the common term You could ask for them to be a part of literally like pre-surgery, Like so when you go in before surgery they can be there during that time, that's. You know you're waiting to go into surgery great distraction, great time to show your child the mask that they're going to be using. So, like I remember at our last just standard procedure, they let Emery put stickers on her mask and play with it that way. But also schedule, schedule, schedule, schedule and insist on scheduling that child life specialist to be available and know to be coming to you post op, Like once you get, once you're in your room. I didn't realize like one of the things I wished we had known was to schedule that person to not just show up sometime that week but to be there at the beginning to make a care plan with your med, with the nurses, with the doctors, because one of the things we learned was the hard way was that all these procedures that had to be done to Emery, that were hurt, that hurt and were scary and were traumatizing, were being done in her room, where she's supposed to sleep and rest and eat.
Speaker 4:Well, so her room became scary And so then she didn't want to be in her room. She stopped eating, she stopped drinking, she just everything scared her, Whereas unfortunately, we didn't see the play specialist until, like I think it was like three days after everything had gotten really bad And she was. She was truthfully upset. She's like I wish they had told me that she, like she said I wasn't aware of this procedure. On this, you know that she was going to be here. I would have been talking to the nurses about taking Emery to the treatment room that's on the floor to do the bad stuff. So that way her room is a safe haven, because that helps your child be more relaxed in their room to do the things you want them to do, like eat and drink and rest and just feel safe.
Speaker 4:That makes a really big difference on their recovery. It also makes a difference on their trauma.
Speaker 4:You're not going to avoid the hard stuff right, like no play specialist can make you know getting an IV put in less you know, less scary. But having it done in another space that they don't associate with like their space is a great trick to help things feel less, less terrible. And maybe that applies more to younger children who you can't explain things to. Like I said, emery was just about age two And that did start to help when we change things to to that.
Speaker 3:for that, to be the protocol. Yeah, that's fantastic. Yeah, and when you're after you have a surgery, if you are inpatient, child life kind of gets flagged somehow in the system, usually that you're there and they try to make it to you, but but you don't know when. So it could be day three, you know versus what, like you said, saying I want to see them right away, and more often than not they can make that happen. Might not be right right away, but certainly within the first day or two, unless you're getting a surgery right over the weekend, which that's another thing.
Speaker 3:Some surgeries you obviously cannot choose the scheduling because, like it, it has to happen And here we go. But if you can air on getting surgery scheduled earlier in the week, that is the better option. Because if you have a surgery on like Thursday or Friday and then you become inpatient and you're over the weekend, of course there's always residents and there's doctors and there's nurses and everybody's still there over the weekend. But it's not necessarily. It's just better to have the team that is working on your case there for at least two to three days after the surgery before they go home for the weekend. In you know in our past experience. So anytime. I can do a surgery on a Monday or a Tuesday, that's what I'm picking always.
Speaker 3:Obviously, some people have to pick Wednesday, thursday, friday, or else our ORs would never work. But you know, and for outpatient appointments or surgeries it's no big deal. You know, if you're going in for that day, as they call it same day of surgery and you're heading home that night, that's fine. But if it's something that's going to be in, you know, causing you to be impatient, i inpatient, i definitely air on the early end of the week. Um, the other thing of course you have to think about is work adjustments for you and your um partner, if they are going to be involved, or your child's you know, mom, dad, grandparent, whatever adjusting the schedule to make sure who's going to be there when and um. Are we taking vacation? Are we going to need what? do you call it the extent? Yes, thank you.
Speaker 3:I wanted to say hip up, but that is absolutely not the right acronym. Yeah, yeah, fmla, you know, are you going to have to. what are you going to have to do to make this happen and trying to kind of work out ahead of time What are your expectations of your significant other, your partner, you know, your spouse, whatever that looks like, to chat about it with them, which again reminds me you need to do that. I'm going to write that down.
Speaker 4:I would, yeah, i would. I would be like if this was on camera, I would be pointing a lot of arrows at what you just said. just from personal learned experience, don't assume that, like, even if you and your partner are usually, you know, step in step, hand in hand, that's great. but going through surgery and especially when you you know there's so many things you can't control, you don't know what things are going to look like Assumptions are such a dangerous thing to fall prey to And I think we do them all the time.
Speaker 4:I know I'm very guilty of that. So, just, you know, take time to have a conversation with your, your significant other about, okay, not only what you need them to be doing, you know, not only what the expectations are for help with your child, your children, your home, but what you need from each other. Like what? what do you need emotionally? Like, and that can feel really vulnerable and uncomfortable even with your own partner. but it's a really helpful conversation to have before the chaos begins, just because it can just give you that extra solid footing that you need to navigate those choppy waters.
Speaker 3:Yes, absolutely, and I think being able to even make room for the fact, like to openly discuss. we probably don't know what we're going to need, but we're going to need to lean on each other and be willing to discuss it as it happens and also have a lot of grace with each other because, you know, sometimes it you might be two hours into being way over exhausted and you've overextended yourself and you should have told him or her to tap in two hours ago, but she didn't, you know. so, just like having grace with each other, to be like, okay, this is going to be a grueling time and we're going to get through it and we're going to have to just, you know, talk about it as it comes to make sure we're walking hand in hand. So other little things to think about but that make a big difference in helping your stress level is, just like you know, if this is an oral surgery or something with the GI tract, is there any kind of special feeding plan that you're going to need so that you can prepare, get those foods on hand? Or even, just like you know, as you're preparing for anesthesia, you're going to want the clear liquids. I find it funny a lot of times the surgery you know center or whatever they call it in your hospital will call you the day before the surgery and tell you, you know, what clear liquids they can have up to what time, and all that. But I always think in my head, like what about the people who this is their first surgery and now they have to go out at 7pm to buy apple juice because they didn't think about the fact that their kid is going to need to have, you know, clear liquid? So you know if you can get some clear liquids on hand and maybe some good post-op recovery foods, like putting applesauce, you know, graham crackers, all those mild things. that's just very helpful, you know.
Speaker 3:for us with cleft, of course, we've had a lot of surgeries that really impact eating. So we've had to do a lot of intentional preparation for what eating will look like after surgery, and I know there's a lot of people out there with GI challenges that have to do the same thing. So those are some things to think about. And then the new emerging thing that I've had to really learn how to do and Charlotte just woke up and is standing right here. You can come in and sit in my lap.
Speaker 3:honey is to plan when and how we're going to discuss the surgery with her. you know and we actually were talking, we were just saying Charlotte the other day that we need to draw you a picture of what the surgery is going to be, huh, and walk her through what that reality will look like. So that's something that you know, depending on your child's age, you can definitely consider and discuss, you know, with your partner What do we want to say, how do we want to say it? You know how deep do we need to go? All that, all that kind of stuff. you know, when their baby's, obviously that's not really a thing, but as they get to two and above, it very much is.
Speaker 4:Just the only other thing I make sure I'm sure you're heading there, but surgery clean out or like talking about you know if mere legs is appropriate for your child or whatever the types of really helpful thing that probably for any surgery because of anesthesia.
Speaker 3:So you're probably going to hear a lot of background noise now because children are waking. So we're going to wrap this up. But one other thing, and by no means are we giving medical advice. So please take this to your doctor, your pediatrician or your surgeon to discuss. But something Ashlyn and I have learned very much the hard way is that anesthesia often slows down the GI tract and can cause Well, anesthesia on top of pain meds is usually what does it, what causes, you know, severe constipation, and that, on top of the actual pain from the surgery, can be really compounding.
Speaker 3:So that's something that we highly suggest you discuss. I know Ashlyn and I have our own little formulas we've created for our kids that help, we know helps get ahead of those things and even talking about it with anesthesia to get certain medications going in their system. We got a little girl chugging down our morning milk already. You can hear it in the background, but that's something I think is important. To kind of flag is okay. What's our plan for either avoiding or getting trying to get ahead of an on top of constipation which is often such a frequent result of anesthesia and pain management? It always boggles my mind that it seems like a surprise to when we get to post-op and you know, we get to the recovery floor and they're like, oh, she's constipated. And I'm like, yes, it's not shocking.
Speaker 4:So I will say that I've encountered, like both surgeries. I was surprised at almost you know, pardon the pun the pushback that we got for wanting to start her on something to help with the constipation, because I was, like you know, with Emory. and once again, just to reiterate what Emily said, this is not medical advice. We are not telling anybody to just do this by any means. But it is definitely worth a conversation because you know, especially if your child has a history of constipation, surgery is only going to increase that And not only does it increase the pain level but it decreases their appetite, it decreases their thirst, all of those things when they're uncomfortable.
Speaker 4:I mean, think about. you gave me the best advice, but my favorite advice you gave me during Emory's recovery was when you stopped and you told me you're like, well, i'm trying to think like if I were the one going through this, like if I was getting all these medicines and I wasn't eating much, i would probably be nauseous, like things like that. But I was like, oh, so you know, kind of look at it from the basics of, okay, yes, it's a child having this, but think about yourself going through it is a really good way to help prep for things that might come up. So like, maybe anti-nausea medicine is something you want to request to just be on, you know. talk to the team and say is this something that we could just have in the chart that's ready to go, should we think we need it? Once again, it's not medical advice, but it's just. it's a good conversation to have.
Speaker 3:Yes, i don't know how many of the noises you can hear Charlotte drinking her milk, but it is sweetness in the background. Yes, agreed totally, and I've learned that if you know there's certain medications that you're going to need or or issues you're going to need to head off, like constipation or nausea or you know whatever it is, fill in the blank after surgery, your best bet is to have that discussion in the pre-op room that morning of with the anesthesiologist and the surgeon, because they can put the orders in the system then, rather than waiting for after surgery. And then there's a lot of shuffle and not sure who's the one in charge of putting orders in at the time, and do we need to call the surgeon, you know, and get their approval and all that stuff. The best option is to just talk about it that morning, right before the surgery, with the people who are going to be able to put in the orders right away. You know, and they can put in orders for what post op looks like And of course that can be adjusted once you get to recovery floor. But I have definitely learned you cut through a lot of messing around if you just discuss it upfront before the child goes back to surgery And then just other little things to think about.
Speaker 3:That I think we often forget is, like you know, do I have the groceries for the week I'm gone, or is somebody lined up to to provide the meals? or are we going to stay at Ronald McDonald House, if there's one near the hospital, or are we going to have a hotel room? are we going to have the kids come visit? We're still trying to hash that out, It, you know are we going to have kids come to visit while we're in the hospital or are we going to wait till we get home for them to be a part of it? The other kids, you know, do we have the dogs being watched and the mail being brought in and all that stuff? And I know this is a very overwhelming list And I'm hoping that when we have it in the show notes, you can kind of feel like, okay, i can just check through these and be like, yes, yes, yes, got it. Highlight this. I need to do that, you know, whatever. So I apologize for the coughing, but so hopefully this is helpful, like all of our episodes is probably overwhelming and helpful all at the same time. And just like life.
Speaker 3:But we would love to hear from you If you have anything else you would add to this list to prepare for surgery and I know that I mean we could go on and on and on with things, but to avoid overwhelming you to the max, this is a good start and these are things that we have, and you know this is only from our personal experience. So we would love to hear from you to share, you know, what have you learned that has really helped make recovery better, smoother, sailing, that kind of thing. You can reach us at contact at charlotte'shopefoundationorg. You can also find us on Instagram and Facebook. We would absolutely love to hear from you. We hope this list has been very helpful for you. If it has been overwhelming for you, just take a deep breath, walk away from it for a while And when you're ready to look at the list, come check out the show notes 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. Reach out to us at contact at charlotte'shopefoundationorg. And last but not least, if you know of someone who could benefit from this podcast, please share. We hope it's very.
