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
10 Stages of Pediatric Surgery
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Imagine navigating through a labyrinth of complex medical needs for your child, coordinating multiple specialists, and grappling with the emotional toll of balancing her care with your own work. Emily bravely shares her personal journey of exactly this rollercoaster ride in this touching episode. Join us as we venture through the various stages of pediatric surgery from Emily and Ashlyn's perspective; from the very beginning of symptoms discovery, to research, to surgery preparation, and finally the surgery itself. Each stage unravels fresh emotions and challenges. The post-surgery recovery phase is a journey in itself, involving intense 24-7 care and the struggle of finding new normalcy.
The 10 stages:
- Symptoms appear - you know something is wrong but don’t know what; seek out specialist for answers
- Discovery - need for surgery is determined; denial is often involved
- Research - research all possible options to try to avoid surgery or make sure it’s the right surgery
- Surgery Prep - you come to the conclusion this is the right next step and now you get very busy with all the details to prepare. Anxiety and jitters propel you into managing each and every detail - as if you are nesting for a newborn baby
- Surgery Day - game time. You’ve lost sleep, been anxious, worried, researched, cried. Now it’s game time and you’re just ready for it all to be over. You are ready to enter the battle that is postop recovery- as ready as you can be.
- Post-op Recovery - all hands on deck to help recovery go as smooth as possible - it’s like having a newborn, everything for them comes first, hardly any sleep but unfortunately the main difference is there is pain to contend with. You're all exhausted and out of sorts.
- The Black Hole: the term we have fondly dubbed for the month following major pediatric surgery when its pain medication management, side effect management, medical equipment, wound care, infection watch, follow up appointments, etc.
- Light at the end of the tunnel - a month from surgery when you finally see your kid doing something they couldn’t do before surgery or being joyful, a kid again. You can finally take a deep breath for the first time since learning surgery was coming.
- Clean up of emotional fallout - the month 5 weeks after surgery and on. You and your significant other and your family pick up the pieces that all fell to the wayside while you were surviving. Siblings' emotion
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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 Together. we can walk this journey in hope.
Speaker 2:Hello and welcome to the empowered by hope podcast. This is Ashlyn and I'm really excited to say, and Emily, because we have our amazing Emily back this week. I'm really not sure how, to be honest, because her life is still incredibly crazy post-surgery, mid-recovery for Charlotte, who is true to nature, being such a rock star no matter what she faces, just like her mom. But just Emily, i'm so glad that you are back and I know that this has been a heck of a journey and I'm sure our listeners are really, really looking forward to getting more in-depth update from you, because the best I've been able to give is that you're in hospital. Then you were out of hospital and things are looking up, but also incredibly challenging.
Speaker 3:Yeah, yes, well said. Hello everyone, i have missed you so much and I actually realized that I must be getting to kind of slowly digging myself out of the black hole of post-op which we'll talk about what that actually means in this episode But out of that post-op recovery phase slowly but surely, because my brain started thinking back to Charlotte's Hope Foundation and thinking about the things we were working on before surgery and thinking about podcast topics, and really for the last three weeks my brain has not had the capacity to even remotely think about those things. So it's very exciting. That tells me that we must be doing better, and by we. I always somebody asked you know, how are you doing, emily? And I always answer we are. This because that's how it ends up being right. Like, my well-being is very much attached to the well-being of my children, and especially when one just got through post-op.
Speaker 3:So yeah, it's been a long road, but maybe not as long and horrible as I kind of expected, which that's always exciting. But we're also not done yet, so I'm not going to get too excited. I'll knock on wood for you. Yeah, we're still. We're now on two different antibiotics for two different kinds of infections that come from two different sources that can't be treated with the same antibiotic and the pharmacy didn't have the right medication. So at 8 pm, right before holiday weekend, we're running around trying to find the right one and, you know, trying to get three different specialists to talk, to get on the same page on what should be used and what doesn't interfere with her heart medication to cause rhythm issues, and you know, so we're still in the thick of it.
Speaker 2:That was two days ago.
Speaker 3:In the life of Emily. Seriously, that is a very normal day. I have one specialist saying, well, let's go ahead and do this medication because the culture came back, that you know, the bacteria is resistant to this, this and this. And I'm like, okay, but the other specialist said that that will interfere with the cardiac meds and he's like, oh, so then back to the drawing board. And then I talked to the other specialist and he says, well, you know, because of this interference, let's try this medication. I'm like, yeah, but that that the bacteria is resistant to it and the other infection.
Speaker 2:And they're like, oh, you know that game that you start playing in elementary school where the teacher says like a sentence or whatever to one kid and then all the kids have to like, whisper it to each other and you see who. what is said at the very end. Telephone, that's my everyday life.
Speaker 2:Exactly That's what I'm imagining, but yet you are doing this with literal medical information. That's extremely important And I just if anybody medical out there is listening to this I think that's a really interesting thing to ponder on what that's like for parents, caregivers. That's a heap of responsibility, trying to carry all that pertinent information that literally impacts her health, her life with that many doctors.
Speaker 3:I cry about it weekly, seriously, for real. It's a lot of weight on anyone person's shoulders and it's a lot of frustration And it, you know, it's natural to happen when you have a bunch of different specialists at the table, but it gets exacerbated when you have a bunch of different specialists from different medical facilities. But, honestly, even when we were all at one hospital system, it was the exact same. So I don't know that it really makes much difference. A lot of doctors will say, well, if you know, we were all in the same institute, it would be better. But I am here to vouch that actually that's not really true because, like I said, we had everybody at one institute for probably four years and it was no better than it is now.
Speaker 3:So so crazy to think about.
Speaker 3:Yeah, honestly, what keeps me up at night and this is a whole bunch of future podcasts that we'll have, because it's not what we're here to talk about now, but it is what haunts my every day, and it is a huge goal with Intra Toke Foundation is to help improve this siloed system that we have, where, you know, you have your different specialties and all their little different departments And to you know, it keeps me up at night worrying about what?
Speaker 3:about the families who the parent or the caregiver can't step away from their job and make this their full-time job and who, you know, isn't able to take their children all over Heckenback to make these appointments happen. You know, when you go to the pediatrician and they send you the ENT and then you have to go to urology and different departments, you know, and all this stuff. So, anyway, that's that keeps me up at night constantly, because it's it is a full-time job and it requires a heck of a lot of diligence and a heck of a lot of tenacity to stick with it and to make sure we aren't putting her on a med that's going to cause her heart to go out of rhythm, or we aren't, you know, putting her on more antibiotics. That's going to cause a fungal infection and oh, it's so much fun.
Speaker 2:So anyway, emily how many hours a week would you just ballpark average? Do you think you spend just on phone calls or in appointments?
Speaker 3:I would say it's an average of. I mean, it's really hard to average because some weeks it's like all week all day long and some it's not. But let's say we're not in appointments necessarily that week more than a couple. Anyway, i would say it's an average of three hours a day. And that's usually, that's constantly. You know that's while I'm handling children and the care and the catheterizing and the ostomy bags and the medications and all that it's on the phone. It's, yeah, three hours a day probably.
Speaker 2:I literally don't know how you could have a job. This is a job. It literally is a full time job.
Speaker 3:It's a job that doesn't pay but costs a heck of a lot of money. Yes, that's true.
Speaker 3:And oh my gosh just that's another thing I'm working on, yes, yeah, the cool thing about Charlotte's Hope Foundation, though, is when I'm working on things for Charlotte's care.
Speaker 3:I'm simultaneously.
Speaker 3:What I love about what we're doing now with Charlotte's Hope Foundation is it's very much all the same What I'm working on for Charlotte's Hope Foundation, i'm working on for Charlotte, you know, like the other day or a couple weeks ago I guess it was four weeks ago now pre-app we were down at our main hospital facility for an entire week for outpatient appointments, and I would say, in each appointment we spent most of the time obviously talking about Charlotte and at least a little bit of time talking about Charlotte's Hope Foundation in every single appointment, you know, and a lot of the phone calls, and even this morning I'm at Hippo Therapy and I'm talking to the mom right next to me about our podcast, and hey, look us up, you know.
Speaker 3:So it's just so cool that there is no divide between personal and professional life at this point, not even a hair of divide, which can get exhausting, but it's also kind of nice, because it's like everything I'm doing is moving towards the same goal of health for my daughter and being there for other parents and caregivers. So that's a lot of fun.
Speaker 2:So so, before I dive into me what's going on with Miss Emery, Oh, my goodness, emery is two years old for sure, and, which is awesome. It is a lot of fun. She's doing so so well. It's really hard to believe, honestly, that we are Gosh, three months out from surgery. Yay, this week. Wow, that's really like. That doesn't even seem possible. I Literally felt like the time we were preparing for surgery Was like six years. Yeah, granted, she's too. That is just Man. I'm surprised, how surprised I am right now thinking about it that it's been three whole months But she is doing so well.
Speaker 2:I've noticed that the Her saying ouch has gone away. When I pick her up and somebody holds her like you know, like You know what I call hip hold, right where you put on your side and legs are kind of wrapped around you for for quite a while. That would still definitely cause her some pain or discomfort and that was really the only Indication that she had major surgery. But what was wild too, i was changing her gosh probably sometime last week and And for some reason I just happened to like actually take a second to really look at her scar, because she has the exact same incision Twice right, like they went through the same spot for both surgeries And it's a long incision.
Speaker 2:But I realized I was like, oh my gosh, her scar has already faded so much and actually there was only a small part of it last time that still stayed a little bit red. That's actually lighter now, which I don't know how that happened. But it's interesting because I had kind of been having more of a Personal debate about whether or not I should be doing anything for her scars. You know, i mean they say like after surgery, there's all these creams, ointments, whatever that you can put on them to help fade them away. And I felt really torn because It's like to me, like these are, these are like battle wounds, exactly their warrior medals. They're amazing to me.
Speaker 3:I know I feel the same way.
Speaker 2:I mean I get the whole limit the scar tissue.
Speaker 3:Blah, blah, blah, i get it.
Speaker 2:Well, i wasn't even thinking about that. I was literally thinking about us, like okay, but I was like, you know, when she's 13 and wants to wear a bikini, you know, start wearing bikinis or something like that. Is she going to be annoyed that I did not, you know, help lighten her scars, or I mean, i hope to raise her to think that they're awesome, and you know, that's the plan. But it just kind of made me feel better. Actually, i was like, look, it already faded on its own enough. So I'm really glad I didn't do anything. Yeah, and I really do want to make that a point of raising her to see those as Just a really cool special part of herself. Yeah, i Mean, like I said, i think they look amazing. She looks like such a I don't know Wonder Woman. Move over is kind of how I feel when I look at them. Yep, that's awesome. But she is, you know, doing things like asking to go to the potty. So she has her little, like you know, potty trainings, potty's in the bathroom at my house, at my mom's house, and She will go over there and use those, which is just amazing to me, honestly.
Speaker 2:But I was talking to Emily a little bit before we started recording, about how it hit me today that We have less time in front of us than we do behind us, where it is typical to be wearing a diaper, and That kind of got to me a little bit today, just because I Remember thinking at the beginning of all this, at as long as she's, you know, when she's a baby or when she's little like, it's still Diaper time. You know, this is when the time is easy, it won't be so hard, but once we get past that, things are gonna get more challenging and it was just kind of a oh my goodness, just a weird realization today and I don't know that's not a common experience for people with their kid approaching potty training age. Yeah, but, emily, you've been really helpful through it, as always, and I talked to my husband and He had some really good insights which I'll just throw out there. When you say if anybody has feelings, whether it's about potty training in particular with your child, if that's a challenge or anything that would be a typical Milestone that you're approaching and maybe you have concerns or there's indications that you're, it's very possible that milestones not going to happen.
Speaker 2:Talk to somebody else. Please just get outside of your own head, because I was on the highway to hell really fast Yeah exactly, it doesn't take very long, does?
Speaker 2:it? No, it doesn't. So, emily, we've been talking about. You, know all the experience you've racked up with multiple surgeries. What are you up to? is it 17, right?
Speaker 3:Yeah, procedures. I always say procedures because, like, some are major major surgeries and some of them are like oh, you got put under so we could change out And it frost me too. either way, though, it's anesthesia, it's, you know, recovering from that.
Speaker 2:And then I don't know of those major surgeries, it's probably 10 or 11 of them are major and the others are like gives me a gut punch, like I know I still takes my breath away, but anyway, i'm talking about that. I think it is the point Talking about that. One of the things that you've been sharing with me that I think is really helpful and not something I've honestly thought about until You pointed them out and helped me understand. Maybe what I was actually going through with my family is that there's literal stages Involved to a pediatric surgery, right Like there's, yeah, early stages, there's the mid stages and, yeah, there's the latter ones, and I think our listeners would really benefit from Hearing what you have to say about this.
Speaker 3:Yeah, so, and you might hear in the background, charlotte is really emotionally upset right now. Daddy has her. She is well taken care of right now, so don't worry, we're not ignoring her. Daddy's in charge for the next hour and mommy needs a minute.
Speaker 1:But, anyway.
Speaker 3:So if you hear her in the background, we are, we are 100% taking great care of her as best as we can, or at least daddy is so anyway, um yeah, so actually her crying in the background goes really well with the phase that we find ourselves in, which is like the I'm calling it the cleanup phase, the emotional fallout of surgery. So I need to do some research because I wonder if somebody has already kind of coined the different phases, but that from my perspective, i'm talking about the parents experience For going through pediatric surgery. So not the, the pediatric surgery itself, but for the parent, what you go through, and your family as a caregiver, what your family goes through When you have a pediatric surgery for your kiddo. So I just the other day I was, i don't know, Taking care of Charlotte and it was a really rough day And I just started typing as fast as my hands could go. Honestly, that's when the best content comes up, is when I'm in the height of care and my brain is just like, oh my gosh, this is crazy, and I start writing it out And then I send it to you and then it becomes an awesome podcast, or, like you too, you're constantly like in the height of something And you send me something and that becomes our best content, right? So, because it's real, it's living in the, in the thick of it. So I've come to learn that there's what I'm gonna say is ten different phases of pediatric care, and Right now we're in the emotional cleanup phase. So I'm gonna rattle through those ten of what and again. This is purely from my experience, in my perspective, but I have a feeling if I were to look it up online, i would find either a lot of resources to support it or no resources at all, because Documented the parents journey yet, which is why we have Charlotte's Oak Foundation.
Speaker 3:So I think the initial phase is when you have the symptoms. So stage one is symptoms. Your kid has symptoms and you can't figure out what the problem is. You know there's something wrong. You're seeking answers, you know you. Maybe you start with your general pediatrician, you get referred, or maybe you're pregnant, something's going wrong, whatever. That's where you're kind of in the stage of you know something's wrong, but you don't know what it is. So you're in the symptom stage and we're in and out of the symptom stage constantly, depending on which Body system we're talking about, you know. Actually, i would say we're always in the symptom stage because we have at least 10 more looming surgeries in the next 10 years, so constantly dealing with symptoms and trying to figure out what are the right answers. And then stage 2 is discovery, like where you finally meet with the doctor whether it's the surgeon or whoever that's like Oh, this kiddos gonna need surgery to repair this problem. So stage 1 is symptoms, stage 2 is discovery.
Speaker 3:Stage 3, i would say when you're in the discovery phase you learn that your kid's gonna need surgery. At least my initial reaction is Denial, and not necessarily in an outright Oh, she doesn't need that. It's more of in a like oh, it'll be okay, we can find another option. Surely It's no big deal, you know, like poopooing it, almost trying. It's like my brain's way of telling it don't panic, it's gonna be okay, right. And then stage 3 is kind of panic. It's when I go into research mode. It's when it's like oh, my gosh, i've been told we have surgery looming. I don't like that idea. So I'm going to look up any option I can possibly find that's either not surgery or a better surgery. And I would say this last surgery exacerbated stage 3, the research stage Immensely, because I did not like what our surgeon said was our best solution. And so I went to seven total surgeons around the globe and all of them agreed that it was our best solution. But that reason that was overkill. I'm not. I'm not suggesting anyone should ever find seven, unless you really need to to help You sleep at night, which, if you do, then more power to you, because I totally did this time. Honestly, it wasn't till the seventh one said yes, do this surgery. That I was like all right, fine. So stage three is Research. Stage four is surgery prep. So you've done your research. You finally concluded This is what we have to do. We're doing the surgery. It's scheduled. Stage four You're in surgery, pep prep.
Speaker 3:I would like to equate it to nesting when you're pregnant, like those first or the last few weeks before you give birth, except it's in. I told my husband when we were in this stage. I was like you know, it's almost like I'm preparing for a huge vacation. Because you got to think through Childcare. You got to think through school. You got to think through work. You got to think through who's gonna watch the house. You know, washing all the laundry before you leave, all that stuff, but you don't have the joy of the vacation to look forward to or the joy of a beautiful newborn baby snuggles. You just have The looming post-op that you know you're gonna have to deal it. But you have to hold on to, okay. But we're doing this surgery for the goal of whatever it is We're going to, you know, accomplish for this child physically afterwards, right. So surgery prep, i would like to say, is a lot like nesting, but not with as much anticipation, with for the joy.
Speaker 2:Yeah, i'm gonna jump in just for a second and say so. I Loved your analogies and they fit so well with who you are. I'm gonna speak up for the non-type A people, yeah, who like myself. My analogy that came to mind was It's like preparing to take an algebra final that you never went to class for and you know that it's coming and you have to do it, but you have no idea what's actually going to be on the test and if you're going to know how to handle any of the problems. That's more the like what?
Speaker 2:I guess, I kind of felt like Leading up to surgery, but I like your analogy is like that definitely brings it back to making it feel more I don't know more, more practical or more reasonable way to look at it, as opposed to only looking at the terror that is.
Speaker 3:I Think the reason I equate it to nesting is because it gives you a sense of control, because it's like when I'm in this phase of Surgery prep, i find myself clinging to things that I can control, like I can get all the laundry done, i can leave the house clean, sort of ish. Kind of I can try to make sure I have childcare lined up for my kids. You know, i can't Figure out what the heck post-op's gonna look like. I don't know. You know right. So it's interesting. It's Yeah, for better, for worse. It's.
Speaker 3:It's almost like you know, when you're nesting for a baby, all of a sudden cleaning the top corners of your ceilings is critical right When before that it had zero impact on your life, but all of a sudden, the week before that baby's born, we have to have those corners cleaned.
Speaker 2:Is that just me? No, but I'm laughing at what my pre-surgery prep for, like what my control, where I landed for trying to grasp some control was Basically trying to figure out all these travel ideas that I had, which I still look back and think about. How many times you must have just been like this girl has no clue what she is in for. But I was. I was straight up Floating down the Denial River as fast as I could go down it and I was spending all the time like, oh, the kids will really like this adventure, and then we could go, stay in this city or this town And you know, while she's recovering it'll be fine, like she'll still be able to do things. And I just didn't realize that my child was going to be experiencing labor, like pains, right, and you know, falling to the ground on the regular, and it would take two to three people to change a diaper. So Not ideal for traveling around a country for the first time, right?
Speaker 3:right? Well, i remember you telling me about all these travel plans and me thinking in my head You know what, emily, just because your experience has not been that that would ever be possible doesn't mean hers won't, so maybe, maybe it'd be fine. So I was totally on the Denial.
Speaker 2:River with you. Yeah, we did get a little bit done, but yes, a little bit you did.
Speaker 3:you were like oh my gosh, why did we do?
Speaker 2:I was like why didn't we just stay in one place the entire time?
Speaker 3:Oh my gosh.
Speaker 2:Is ever looking for some guidance on international travel for medical care. Please, please, please, reach out to me so I can tell you all the do nots Yeah, i have a long list and the do's. You did a lot of things right, did a lot of do's yes, but yes. Definitely a lot of do not.
Speaker 3:I think the best thing to keep in mind. And obviously it depends like if your kid is going in to get tubes put in, that's very different than you know huge abdominal surgery. So this is not like a blanket statement that covers all pediatric surgery. But if it is a major pediatric operation, just assume that the month afterwards you will be doing nothing. Seriously, very good advice.
Speaker 2:That's your best option. Advice.
Speaker 3:Yeah, we got to July 4th weekend. We're actually recording right now, july 4th weekend and charlotte, just two days ago, started Take turning a corner and I'm not so sure, like you know, you never know If you've turned the corner for good, until you're like three weeks past it and you can say, yep, that was actually the corner or nope, it was just another one step forward, three steps back, but at the moment we're one step forward and I, you know, somebody asked me who was it? I don't know. Somebody asked us Oh, we were picking up charlotte's glasses, which is so minor compared to everything else we're doing, but the glass store was right there and the order came in, so we stopped to pick up glasses and we're talking to the lady and she goes.
Speaker 3:So what are your july 4 weekend plans? and obviously she has no idea about anything besides. Charlotte needs glasses and my, my head just like Exploded a with guilt that we have none, and then b with oh my gosh, it's july 4th weekend. Like there's a lot of fun things out there. We should probably do something and then see with the realization of like, oh my gosh, this is the first time I've even thought of anything besides post-op survival, let alone doing something fun, you know.
Speaker 2:Right that reminder that other things are going on in the world.
Speaker 3:Yeah, and then of course, this all happened in a matter of, like you know, nano seconds in my brain, because then I'm like feeling the Disappointment that we haven't gotten to do anything fun for the summer and whatever. Anyway, the runaway train. So that's surgery prep and then surgery day. I don't know about you, ashlyn, but when it comes to surgery day, it's like I've mourned this, i have kicked and screamed about it. I've done the denial river, i've done the research, i've done all the prep I could possibly do, including cleaning out the corners of my ceiling. That's figuratively speaking, but like I've done everything I can, now it's surgery day. It's just time to it's game time, it's it battles on.
Speaker 2:You know, like right, it's like you put on a different I don't know. You know your mindset is just there's a shift, right. You just There's no more denial possible. Mm-hmm, i will say, even up to the point, until I hand her, handed her over, there was still this I can't believe we're doing this, i can't believe we're doing this. And as soon as I handed her over, then it was I wouldn't call it a calm, but maybe more of an acceptance finally sinks in. It's like okay, this is go time.
Speaker 2:And The other thing I've learned is that while they are in surgery, that is the calm before the storm, yep, and so that is the time that you actually Can breathe, even though you've probably like it's very common to feel like all that anxiety while they're, you know, in the or and you don't know what's going on and they're not giving you enough updates and all the things. And That was one of the things when emory had surgery in london. I you know, after she went back, as you know, we had like a nurse walked us out and she's like okay, she's like you can either wait here, she's like I suggest you guys go get breakfast. You know, blah, blah, blah. And I was like okay, and I was like well, i know you have my number. I said so, how often do you give updates?
Speaker 2:And she was like, like when she's done? and I was like, no, like updates during the surgery, like how progress is going and all that. She's like I can ask, but we don't normally do that. She's really Basically wow, she's like we have the window, like the, the window time, she's like, and so the only update we get is like You know, are they Whatever they call it? Let's say like Getting the anesthesia and all that stuff done and all the IVs in, like that's called like one stage and then, yeah, actually opera, like when the actual surgery itself starts and they call that something and then wrap up you know, then they let you know when they're that and going to recovery And that's it.
Speaker 2:And I was like, okay, her first surgery we literally had an update every 45 minutes of like this is what they found or this is what they're doing And this is what they're seeing. So it felt really scary to me to not have those updates. And then, when Emory's surgery ended up finishing close to an hour earlier than expected, when I heard from her, my first thought was something's wrong. Yeah, like this is too soon.
Speaker 2:I shouldn't be hearing from them. He wasn't able to do the whole surgery and she's like everything went great, Went very smoothly.
Speaker 3:Yes, I'm very familiar with that panicky feeling And, honestly, it wouldn't matter if they were done early, done late, done on time. your brain has a way of telling yourself it went wrong.
Speaker 2:Yeah, this time around.
Speaker 3:They started the anesthesia and they were doing a scope about something completely unrelated to the surgery itself a different body system And they were not planning on coming out to talk to us until everything was totally done. And so we got a message like 20 minutes after they had started and they said we're actually going to meet with you now. And of course I was actually kind of impressed with my reaction, because my brain was like they have bad news. And then my brain was like, well, can't do anything about it till we learn what it is, don't panic.
Speaker 2:But we're also five years. I don't have that response.
Speaker 3:Well, we're also five years into receiving bad news And I don't mean that to be dramatic, but literally every intervention we've had they come out with. So we found this and it was something we were hoping we wouldn't find. That's just the way our story has evolved, so we've gotten really used to it. And this surgeon, when they came out and explain what they found this time, they were like so we're really sorry, you might need to just stay in this room and process that for a little bit And I'm just like you know what.
Speaker 3:Here's the thing. I don't need to process it now. It's going to be when we get through the height of this surgery and I can breathe in a month. That's when I'm going to be at rock bottom about what you just told me now, because we can't do anything about what you told me now until we get through this. Oh man, my brain has an interesting, very type A way of handling things which, if anybody's listening and is like wow, that's not how I function, don't worry, it's not how Ashlyn functions either. I'm crazy, i know it.
Speaker 2:You are Okay You're not allowed to use the word crazy to describe that because I know like once again, i have so much respect and I am so grateful and sad at the same time that you have this experience that you can share. But I would just say, like every time you go through something, it's you get a little bit. You seem to just be more and more polished and more, but at the same time more flexible too, in a sense like you can take the punches a little bit easier. It's not that the information that you get is easier, but I think you literally have learned how to take the punches so that they don't knock you out.
Speaker 3:And I think the biggest part of that is learning to let the emotion take you over when it needs to and not force it when it doesn't. You know like I was not feeling a whole lot of anything when they told us this news this last time And I know enough now to not beat myself up about that either. You know like I'll feel it when I feel it and it will be really painful And in the meantime my I'm clearly, my brain, clearly, can't process that right now. So we're just going to write it in notebook and we'll get back to it later. So, yeah, i think a lot of it is just learning to let your body process and your brain process when it needs to process. And heaven knows, there's plenty of times where it's.
Speaker 3:We were actually talking earlier today, ashlyn, about a lot of times mourning the diagnoses of our children and the intervention we know they need. It's like mourning a death, because it comes in waves and sometimes you'll be fine and all of a sudden it hits you out of nowhere and you're sobbing on the floor And other times, you know, i don't, i don't know it. Just it comes in, it goes and there's no predicting it and there's no controlling it, so just letting it be what it is and not putting false expectations on yourself that you're going to be able to like either be, you know that, really amazing, brave, whatever you know, straight face person, but also knowing like, if you are great, that's fine, because eventually you won't be and that's fine too. So anyway. So surgery day, it's battle time and you kind of put on this, you know, like armor and it's just it's game time And then so that's stage five.
Speaker 3:Stage six, i've discovered, is recovery and that's really the pack you So the post anesthesia care unit. That's when you're first maybe admitted to the floor. If it's an inpatient surgery, i would really say recovery is like that first week and it's intense and it's, you know, 24-7 care. And my husband and I have really learned how I would say we did it the best this time around than we have ever before, where we took shifts and we literally did shift change where we would like, he would have a shift with Charlotte and then at the end of his shift we would stand and pow out. He'd tell me everything that happened and then he would go take a nap and I would take over. I was really proud of us This is almost like we were nursing staff doing shift change.
Speaker 3:but so the recovery phase it's. you know, honestly, i would say like that is the newborn phase in terms of nobody gets sleep, nobody gets to do what would be typically coined as self care, like if you get a hot meal and you get to pee when you need to and you have a toothbrush, you are doing really good that week, right?
Speaker 2:Or hot meal, something that takes place in the hospital because I don't think I've ever had one of those True?
Speaker 3:Yeah, if you get to pick the food off your kid's tray, then you're in good shape.
Speaker 3:If you get vending machine snacks, then If you can get coffee that's not from the floor coffee machine, that is sludge, then you are really rocking it.
Speaker 3:So then phase seven, i would say, is that's what I like to call the black hole. So I actually had somebody and I'll say her name because she's an amazing individual You might even want to look up if you're looking for a life coach but somebody named Sterling Jakewith. She coined this term, the black hole, but she was specifically talking about having a newborn, not about surgery, but I like to use it for surgery too. So she was saying, specific to the relationship between a husband and a wife, that the first three months after having a baby is like the black hole in terms of nobody gets sleep and everybody's a little more on edge. And if you Just recognizing that, if somebody gets snappy with the other person, you can just be like oh right, we're in the black hole, it's okay, we'll get through this. And that's how I feel with surgery, and my husband and I have learned to just look at each other before surgery and be like see you on the other side of the black hole, we'll reconnect then.
Speaker 2:I was just gonna say when you explained this to me too, the other thing I really liked about this was thinking about it in terms of that black hole too. is it kind of gives you this permission to acknowledge that black hole and extend grace easier or even forgiveness easier, right, because you can be like this? isn't you who said that to me? It's the black hole you Like. it's two different people in a sense.
Speaker 3:It's the super stressed low sleep, high trauma you Yeah.
Speaker 2:And it gives you permission, not your best self, and that's okay, that is survivor Right. This is a survivor, not survivor.
Speaker 3:Yeah, yeah. And I think it also gives you permission to not try to have 4th of July plans, to not try to have travel plans, to say you know what, no, we're probably not gonna make it to family functions this summer or whatever. You know, it's just like it gives you permission to take a deep breath and take a check out of day to day life because you have to. That's just the way it goes, you know. So I've really liked the end of black hole. It could last a week or it could last three months, i don't know. It depends on each surgery and you probably don't know until it's over how long it lasts.
Speaker 3:I'm still not sure with this one how long it's gonna last or if we're clawing out of it. I'm not sure. But eventually you do get to the light and for us oftentimes that is so. stage eight is the light. I would say that's often about a month after surgery. It's when the surgery site itself is healing pretty nicely. You're not like you know treading water with pain medications and side effects and you know secondary infections and all of that stuff, and now you're just kind of learning how to do life after surgery.
Speaker 2:Yeah, hopefully at this point there's less surprises popping up. That's the thing too I think is important to think. Remember during recovery that it's at the time I feel like, if you go into it expecting to be surprised I'm not saying choose what to be surprised about Like you can predict it. But you know you were talking earlier about that you know, one step forward, two steps back. I think that's really typical during recovery And I think being prepared mentally that that's a possibility is more helpful than assuming what I kind of assumed after Emory's second surgery, that the trajectory was going to be okay, really, really hard when she, you know, comes out of surgery. Probably going to be really rough first few days And then after that it was just going to get a little bit better every single day. Well, we had the complete opposite experience of that Because of, fortunately, a very well-placed epidural, but it just we didn't. I didn't really feel realistic for a while.
Speaker 2:It was kind of this short-term fantasy we got to experience where she was just so much better than we expected, and so I thought you can only go up from here, right And no, not the case whatsoever. But once again, you know, emily was able to kind of help me learn how to get a rhythm with that dance of forward, backwards, forward, backwards, and just keep your sanity, because it's emotionally trying for everybody.
Speaker 3:Yeah.
Speaker 2:Yeah, i always love like one of the things that I really love that you save fairly regularly, and I feel like it gave me the permission to say it is to talk about like your shared pain, like when Charlotte hurts, you hurt too. And so I used to feel like I could only talk about Emory's pain. Like who am I to say I have pain, but it is so much pain watching your pain, so much pain.
Speaker 3:Yeah, it's a suffering that I have yet to experience in any other way. You know, yeah, and I'm not. I'm not trying to say no other suffering is equivalent, but when you watch your own kids suffering, it is next level suffering, that is. There's no way to describe it unless and until you've gone through it yourself.
Speaker 3:You know, I was just telling Ashlyn before we hit record. I think my biggest trigger for PTSD post-traumatic stress disorder is when Charlotte's in pain and we can't either A we don't know the source or B and or B We don't have the tools to resolve it, which is often, and that's when I, like I, can be super calm and chill and stay in the game until we hit that point And that's when I have to be like Daniel, it's time for you to tap in, because I can feel my trauma taken off and I'm not going to be the best caregiver right now. So anyway, yeah, it's, and the whole two, two steps forward, one step back. That is the dance of recovery, and the sooner you kind of just grapple with that, like I fully recognize right now. We've had a good couple of days. We're probably going to have a pretty rough couple of days after this And that's just going to be the way the boat rocks until we get fully out of this black hole.
Speaker 3:You know, we actually we were doing pretty good and then we actually got in a near accident two weeks ago, a car accident, and it we went from zero to 55 and seconds miles per hour And honestly, it's a miracle Any of us walked away, let alone didn't get hurt. But the one thing that did happen was the seatbelt cut Charlotte's catheter in half. That was in the surgery site. Did I tell you this?
Speaker 2:You told me about the near accident, but not about that. Oh my gosh.
Speaker 3:Yeah, the impact of it just snapped it, and luckily it snapped right in the perfect place where I didn't we didn't even have to go into the doctor, i just sent him a picture and I was able to cut the stitch and pull out the part that was broken, and the part that was needed to actually function was still in and functioning. So that was really good. But then we had excruciating pain for her for the next few days And of course I'm panicking, thinking like she has internal bleeding or surgery site is screwed up or whatever. But it just was a lot of bruising in the area. But anyway, it doesn't take an accident for that to happen. But surgery is just that way. It's that you get really good and then you have a few back sliding days and then you get really good and then you have side effects from the antibiotic you had to take and then you get really good and then you have, you know, pain from muscle spasming because the catheter got pulled, and then it's just just the way it goes back and forth, back for. So Once you hit that month out, i think that's when you're not in the clear quite yet, but you're much better and you can start resuming some semblance of normal life. You know you can start going back to some activities, things like that, and that's when you enter the phase that I find us in right now And again, like this isn't like you just keep going from one face to the next and there's no backwards sliding. There's a lot of hopping back and forth or living in multiple phases at once, but right now, i'd say our primary camp is in the emotional cleanup phase, phase nine, and It's the emotional cleanup for everyone in the household.
Speaker 3:So, mom and dad, you know I can sense Daniel and I are finally starting to come off the high of survival and Both of us are in desperate need of things to do other than childcare. Like today, i told Daniel I was like I need an hour to record a podcast, because I need to not be in charge of our kids for an hour. I need it and Because for the last month it's been like you couldn't, you couldn't pry me off of Charlotte's side. If you had tried, there's nothing that could have convinced me. anything else was important. But now that she's in a pretty good place, my body, my heart, my brain needs anything other than childcare, even just for a little bit, you know. So that's when I know we're kind of starting to get to the end, we're getting to the healing, but then also, you know So, the emotional cleanup of husband and wife, of partners where you've been surviving and you've been working side by side But not really even like acknowledging each other's existence And really getting to spend time with them. So I'm sure the next several months will be emotional cleanup for that for us, and then the emotional cleanup for siblings.
Speaker 3:That's been a huge thing this time Ashlyn, with our son Liam. He's four and he has felt every bit of this process, this surgery, and you know, all he's ever known his whole life is his sister having medical procedures. So this is not new to him. But this time around you could tell he He like if, given the choice to be left at home to play and have a great time or come with us and be in the hospital And witness a lot of really hard things, he chose coming with us every single time and when we did not take him with us He was a huge ball of tears.
Speaker 3:So Now we find him being very, very emotional, very clingy, very, you know, outburst of emotion on things that really shouldn't be that emotional and some of that is just being for, but a lot of it is because We're cleaning up the mess that is, you know, happened, of mom and dad being fully focused on Charlotte for the last month. So We're still trying to figure out how to help him handle that the best, but trying really hard to give him the space to have the emotion He needs and also keeping it in check. Not keeping his emotion in check, but like the tantrums you know, like okay, let's, let's process that, because we can't throw our toy for the millionth time today.
Speaker 2:That's kind of like you can still, like you can allow them the grace right that he's going through something that You know the average sibling doesn't deal with, let alone four years old. But I think you also create that sense of security and stability that they're looking for by still having you know boundaries are still necessary and, yeah, i think it just helps look at it like, okay, this is probably coming from, you know, just sheer overwhelm of Emotions that are not understood, nor should they be at this point, but you know that he truly does need boundaries in place so that way he knows where it's. This is okay, this is an okay place to be, or I, you know things feel more in control now And I think you, you and Dan seem to do a really great job at that.
Speaker 3:We're trying it. You know It's really hard when we both are also Emotionally just totally strung out from it, to try to provide that for him too. But I think the biggest thing is just acknowledging it with him and just being like you know what we're all really Stressed from this and you know we're really sorry that you're going through this and we're here for you and If you need to talk about it, talk about it. Of course That's it's kind of talking a little bit over his age, but I think he gets it and so I'm hoping I don't know, we're only four years into it with him But I'm hoping the more we just invite that conversation, eventually, when he's old enough to have it, he will feel comfortable to do it. But he is starting to do little things like I'll be tucking him in and he'll kind of have a little meltdown And he'll be like when, you know, when you were taking Charlotte and I said I wanted to go with you and you you drove away And you didn't take me, and I'm trying really hard to be like yeah, that was really hard, wasn't it, you know? and just like let him have that space to let it out, because yeah, that's really sucks and It had to happen and it really sucks and I'm so sorry. So that's been interesting. The two-year-old thank goodness She's still in La La Land, she's very happy and that's lovely. So no troubles there. But I'm not I'm I mean, my head's not in the clouds. I'm well aware it affected her too and at some point it's gonna rear its ugly head for her because you know, like I said, we have at least 10 more of these to go. So We'll, we'll deal with that when we get there.
Speaker 3:But and then You finally get to stage 10, which is the life after. And you and I were also talking about this before, ashlyn, about how Your life after probably won't look like it did before, and that's okay. It might look, you know. You might have the same job, same house, same everything, and your day-to-day routine might look the same. But you are changed because you have gone through something really hard.
Speaker 3:Your child is changed because they have gone through something really hard and sometimes You have to find a new normal, like a new way to go to the bathroom for your kid because of the surgery, or a new Way to eat, or a new way to walk, a new way to talk, whatever that surgery was for. So you're finding your new normal, you're doing the therapies that you need to do all that stuff, and you're also finding your new normal of what really matters. Because I think these kinds of experiences, ashlyn, really shake you up and make You rethink where, where is life headed, and is it really where we should be going? You know, maybe it's just me, but every single surgery we have it really makes me stop and be like are we doing what we Should be doing with our lives, with our family's life? Are we headed the right direction? What do we need to change? Because I think it just shows you just how, how fragile life is, you know.
Speaker 2:I Agree with that. The other thing I've experienced I know we both have, and this is kind of looking for. You know, some of the positive in this too is that I find that after our big experiences, that I End up in a reflection state of Gratitude, yeah, of just having a different perspective on What I'm grateful for, or just maybe more of an awareness, like things that I would yes, i knew I was grateful for them, but I feel like, after you go through something major like that, maybe that's just how, a way that I try to find comfort in the situation or, you know, find a reason to justify how much we've gone through. But I am grateful for that gift because I can't avoid the hard things that are going to happen, like it's inevitable.
Speaker 2:Yeah it's part of our lives, but I can look for the positive gifts that do somehow come out of it and I feel like that stronger Appreciation or that depth of gratitude that you have, that I feel, like a lot of people, truthfully, i, if they're going to achieve that, it's probably going to take a lot more time than our expedited journey has taken.
Speaker 2:Yeah, and so you know I was, you know you and I were talking earlier and I was like, well, i think you know maybe one of the pros, that is as much as it's. You know it's very bittersweet and that it's so hard to have to gain those insights. At least I feel like where we are in our in our lives. Hopefully we have a lot more time ahead of us to live with that gratitude, to live with that perspective, as opposed to not gaining it until we're much older. And see, here, people talk about Being grateful for all the little things when they're much older and they start losing friends or, you know, losing other more family members and things like that, which that's a very, you know, real experience and it makes sense that they end up. You know that time makes them feel more grateful, but I feel like going through this is just a. It's like going through it at Warp speed speed.
Speaker 3:Yes, well, i think you hit the nail on the head too. When you kind of come out of that black hole and you hit kind of the light at the end of the tunnel, it comes through in little things, like Charlotte can swing and her back doesn't hurt anymore. You know, like when she started swinging a week ago and her back wasn't hurting, i started crying. And When they start being able to run instead of just walk after an abdominal surgery, when and I'm just pulling from our own experiences of the last couple weeks, so every surgery is going to be different victories, but, like for us, she was able to take her first bath since Christmas because she was tube-free.
Speaker 3:You know all those little things that stack up really quick and become. You know You watch your kid walk up to a flower and smell it in deeply and you just start sobbing because you're like a All the pain meds she's on hasn't dulled her smell, sense of smell, hallelujah B, she could walk to that flower and see she's taking in nature, which she hasn't been able to do for weeks because she's been attached to an IV pole. You know, like You just start really appreciating the little things and it's Amazing. Or like Charlotte got to go back to her top bunk because she's not on strong meds anymore that make her not able to, you know, be strong enough to climb up a ladder. It's just, you just start being so grateful for the smallest things and that's a really. I always think after these kinds of things. I hope I hold on to this level of gratitude because I know once life becomes more quote normal, i'll forget how special all these little things are. You know, i'd give yourself more credit.
Speaker 2:I think that I think it's okay to maybe not be Totally focused on gratitude for all those small things all the time, because life is constantly throwing so much Especially at you. But I do think that that sense of gratitude is still hyperdeveloped for you, And I see it just in how you handle things with her and how you're able to manage. you know, while we love our children so much, it is like that mom minute that we need sometimes. It's still okay to need that, But you still, I don't know like you don't complain And I don't know. I just think it's pretty impressive. You always have that sense of gratitude, Emily.
Speaker 3:Oh, thank you, I'm trying, which, by the way, if you're hearing noises in the background, it's more medical treatment happening as we speak. But yeah, so that's those are. Those are the 10 stages that I have, and you know it's taken me 17 of these to really verbalize this. But it's helpful, i think. And the reason I wanted to share it is when you find yourself in these stages, in the back and forth and the, you know, one step forward, two steps back. If you've heard it before and you knew it was coming, maybe it seems a little less either daunting or like you're never going to get out of it, because you will. It's just a face, you're going to get through it. You know, like anything, it just got to keep putting one foot in front of the other And hopefully, by sharing this, it just normalizes it a little bit more and makes it a little less shocking. Kind of like we were saying how we are really excited to eventually put together a class that normalizes medical equipment.
Speaker 3:You know things like when you are hospitalized. This is what a heart monitor is going to do. This is the beep you're going to hear. This is an IV pole. This is, you know, an EEG lead. Blah, blah blah, just all these things, so that when you're in with your child for whatever traumatic experience you're experiencing, the trauma isn't amplified by all these other things. So we're you know, our theory here in sharing these phases is maybe it helps limit some of that shock of the different stages. There are so many background noises right now, so I'm so sorry.
Speaker 2:It's okay. I have a laundry mat running next to me, so life continues. Life is always on the go.
Speaker 3:This is the risk of not recording at 5 am.
Speaker 2:Ashley you know I'm willing to take this one on occasion, yeah did it.
Speaker 3:Oh well, i hope that those stages are helpful. We'll type them up and put them in the notes so that you guys can see them And I definitely foresee us using them as future reference. but definitely, you know, would love to hear your thoughts if there's other stages that your family has gone through. If there's, you know if you find this helpful, if you find this so overwhelming, we want to hear it all.
Speaker 3:Contact us. Our email is contact at charlottehopefoundationorg. You can also find us on Facebook and Instagram. We love it when we get instant messages on either platform and you reach out to us about you know what you've heard on our podcast or anything in your experience. We love nothing more than to connect with you, listeners, because that's you're the whole reason we're doing this. So we just send you so much love, so much encouragement, and we're so grateful that you are journeying with us on this journey, though we are so sorry. Like we say in our intro to this podcast, we're so sorry you have found yourself in need of us, but we are so grateful you have found us.
Speaker 1:You are capable, you are equipped and you are not alone. 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. 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. We hope it bears.
