TOGETHER by AGCI

Together by AGCI is a brand new podcast from the creative team at All God’s Children International.

        

Subscribe on your favorite platform!

Click "Read the Podcast Transcript" for Helpful Hints for Hospitalized Children!

Episode 86

Supporting Children Through Medical Encounters

Keeley Machen, Certified Child Life Specialist

Helpful Hints for Hospitalized Children

  1. Families Are Forever: Class 113 – This course will provide insight on how to prepare yourself and your child for medical encounters, tips for regulation and support during a procedure, office visit or hospital admission, and how to process and recognize success afterward
  2. Nebraska Medicine – A guide for adults helping children understand hospitalization
  3. Nemours KidsHealth – Tools to help guide healthcare experiences. (variety of medical procedures and diagnosis included)
  4. Association of Child Life Professionals – Certified Child Life Specialists’ role in the healthcare setting and additional caregiver guide on supporting children
  5. Helpful Books for Child Patients and Their Families | Child Life Program | University of Maryland Children’s Hospital – Bibliotherapy to support children experiencing a healthcare encounter
  6. Comfort and Coping | Child Life Program | Mayo Clinic Children’s Center – Techniques to utilize when supporting your child at the doctor

 

Welcome to Together by AGCI. I’m Marisa Butterworth. I am so excited to welcome Keeley Machen to the podcast today. Keeley has been a Certified Child Life Specialist since 2016 and has worked for Children’s Health in Dallas, Texas for the past six and a half years. She also taught at Louisiana Tech University. Keeley’s passion is teaching patients and families the coping techniques that empower them to overcome their most challenging days. But she recently experienced a different perspective when her own daughter was born two months early and was admitted into NICU. She is an expert at supporting parents during medical crisis and I am so thankful that she agreed to join us today.

Thank you so much for joining us on the call, Keeley. I, I so appreciate you just getting on here, sharing your expertise and your experience and just like taking time to really educate us on how we can really like do a better job supporting our kids and really like know what, what we’re doing at all as adoptive parents or any parent that is dealing with this. So, thank you. Thank you. No, thank you so much for having me. I love being able to share about it and talk about it and like you said, I’ve recently been on the other side of the walls and had to advocate and see what it was like to feel that as a parent as well.

So, I’m so thankful to be on here and be able to share about my experience and expertise. Well, I am so thankful. I really, really am. I think that this is such a hard subject and I love when it’s not just like me talking about something that I don’t have any idea of really about. That’s something that you’re, you’ve lived and something that you’re experiencing. So, I’m gonna jump right in because I have a lot of questions for you. I’m just warning you there and, and I really wish, like when we brought our daughter home, I wish that I had some like real help on this subject. And when we brought her home from Ethiopia, it was like she had just recovered from, she, she had pneumonia for four months and she had been like poked and prodded. She’d had like medicine kind of given to her and I saw how they did it and was like, oh gosh, that poor baby. And they were, they were doing what they knew how to do best. But when she came home and we took her to, to her first like doctor’s appointment right away, I could tell she was triggered, and she was only five months old. I, I didn’t even, I wasn’t prepared for it and I had two, she had two older brothers. So, I thought I got this, I know what I’m doing.

And it turns out that I didn’t not one bit know what I was doing and you know, I just felt unprepared and overwhelmed and like from that moment on, really she’s 11 now. Like doctor’s appointments are a little bit better, but then shots, anything medical with her have been traumatizing for her and now also for us. So, I have like some PTSD moments too where I’m like, oh my gosh, I, what is happening? So, first question, how do we as parents prepare ourselves for supporting our kids that have, have are have either gone through or going to be going through trauma that they may have experienced, you know, ahead of time and then also be better at really helping walk them through and supporting them through their first like medical encounters I think is what we’ll call this. Like whatever that medical encounter looks like. Tell us all the things. Yes, yes. I’m happy to, well first I just wanna say you probably know this, but you are not alone and feeling overwhelmed and overstimulated and worried about going to the doctor. All of those are normal feelings that we know that children feel them, but also parents feel them as well when they bring their child to the doctor or the hospital. So my job title is a certified child life specialist. You mainly will find child life specialists in healthcare environments.

But we can work in a variety of settings from funeral homes, camps, schools, dentist offices, anywhere where a child can experience something that is stressful. So really just life in general, right. You know, everything can be Yes. Stressful at some point. So, we are trained in helping, I mainly work with patients, but children overcome those stressful situations and teaching them coping techniques. So, my experience, like you said in the intro was working in a hospital and so I meet a lot of patients and families whenever it is their first medical encounter. Okay. And so, whether that is coming in through the emergency department because they have pneumonia like your daughter had or coming in for a broken bone, whatever it may be, that’s a lot of times the first time that the family has experienced a healthcare encounter with their child. And so, we try to set that groundwork foundation for positive coping. So, I’ll start with that, just like what we as child life specialists do. And what I have found is really helpful and one of the most helpful things I feel like is making sure that the family has developmentally appropriate information. So, a lot of times when you go in the hospital, they are speaking medical jargon that, you know, a typical family would not understand what the healthcare team is talking about. So, then that starts to add to confusion, fear of the unknown and you’re already in an unfamiliar environment.

And so, my job as a child life specialist is making sure that the parents and the patient have developmentally appropriate information to help lay that foundation down so they know exactly what to expect. Research shows that when parents and children have that appropriate preparation and information, they start to cope better. They’re more compliant with what to what’s gonna happen. That makes sense. Yes, totally makes sense. Exactly. Cause if you’ve ever been, you know, you go somewhere and they speak a different language and you don’t understand, that starts to add to confusion and worry and you don’t know what to, you know, you don’t know what to expect. Same thing in healthcare. And so, by educating parents just on what to ha what’s gonna happen and what to expect. So, if you were gonna go somewhere for the first time looking at the hospital’s website, I know a lot of children’s hospitals in particular, they have a really good website with different preparation videos that a lot of times families don’t know is on the website. You know, maybe you look at the hospital cuz you’re looking for reviews or looking for a specific doctor. But a lot of hospitals will have preparation for surgery and so it’ll show you pictures of like the different areas that your child will go to, the medical team that they will meet with what to expect before and after surgery.

And all of that’s really important because it should hopefully be in language that a parent would understand so that way you have a better understanding of what to expect. That makes sense. That’s so interesting. I I had no idea that that existed on these websites. So, taking notes, that’s great. Yes. Yeah, for sure. And then I know a lot of times, you know, when you’re at the hospital or at a doctor’s office, parents sometimes feel like they don’t wanna bother the doctor, they don’t wanna bother the medical team because everyone is rushing around, and it seems like they’re really busy. But that is the medical team’s job to make sure that parents understand. And so, when you ask questions you need to make sure that your voice is heard as, as a child life specialist, that’s also a part of my job is making sure that parents have all of the information that they need to make informed decisions of their child’s care. Okay. And that goes back to just making sure that the information that you receive is information that you actually understand because they could use all this medical jargon that doesn’t make a lot of sense to people. And so, making sure that it’s in a developmentally appropriate language so that way you understand everything as well.

So, a good piece of information that I always encourage families to have with them when they go to the hospital where the doctor’s office is a notebook. Ok. So that way you can write down those questions. A lot of people also use their smartphone of course to type in questions. I know for us, like you shared, my daughter was in the NICU, we kept a notebook with us and would write down questions constantly cuz I feel like every time the doctor left the room I thought of a question. And so yes, that’s always how it’s, yes. So having that notebook was so helpful. And then back to the first question, I could just talk about this forever so you might have to stop me but Well it’s good cause I’m getting a lot of information right now. This is exactly what I’m looking for so it’s perfect. Good. Just making sure too, I know a lot of times I can say now say we, we as parents want to protect our children and make sure that, you know, they feel safe in the medical environment. And one way sometimes that we see parents protect children is by not telling them what’s gonna happen. I’ve, you know, worked with parents before that have told their child like, oh we’re gonna go to grandmother’s house or go to the park and then they end up at the doctor’s office or end up at the hospital. Oh gosh.

Yeah. And it’s, it’s so important to make sure that we’re telling children the truth about you know, where they’re going and who’s gonna help take care of them because that, you know, helps with the trust process between you and the child but also can help them start to understand where, who’s gonna help take care of them, why they’re going there, you as their parent wants ’em to feel better. And so just making sure that we’re laying down that foundation like I’ve talked about, of being truthful. And a lot of parents are like, okay, well now once I tell them they’re going to the hospital, how do I explain everything? And so there is a lot of great resources and tools and I know you and I had previously mentioned before this that I could provide some resources and I can definitely send you those as well. That would be amazing. Yes. Yeah, of course. Yeah, and we can, we’ll attach them in the email that goes out, it’ll be in there to, so if you’re listening, hopefully it’ll be in an easy spot to find if you need those resources. But we’ll make sure to get ’em in there.

Yeah,  and you know, even just bringing in like a doctor play kit and explain to them like, you know, the doctor or the nurse listens to your heart cuz they wanna make sure that your heart is healthy and doing what it should, or the doctor or nurse gives your body medicine to make sure that your body’s feeling better. All of those things are developmentally appropriate for let’s say like preschool and toddlers to get them to start understanding why they’re going to the doctor and why they’re, you know, meeting with these different medical professionals as well. Okay, yeah that makes total sense. And I know like as parents, yeah you, I can like it’s easy for me to say right now like, oh I can’t believe that they would lie to their children. But I can totally see where that would come from of like, gosh, you know, your kids like especially when they’re, they’re start, they start having awareness of time and what that looks like and, and you know, they’re gonna be asking and dealing with anxiety but I love that like you’re just wanting to set up truthful communication from the beginning. And I mean my next question kind of backs us up just a hair because, and I won’t continue using this analogy forever obviously, but this is just my own experience, but my daughter was obviously a baby and didn’t have language yet.

But like when can we actually start communicating about these things with our kids and how do we know like what our kids understand at each age and stage? Yeah, that’s a great question. We provide services in the hospital to all ages. So, for infants it looks a lot like still communicating exactly what the doctor is doing to their body or what the nurse is doing to their body. And we know that infants feed off of parental anxiety so making sure that the parents are aware, are aware of what’s going on so they can help support the infant as well. Once they start to get to that toddler preschool age, it’s really common for them to view any kind of hospital experience as punishment or they feel like they’ve, you know, done something wrong. And so, making sure that they know like your job as their parent is to make sure that their body is safe and taken care of and that’s why you brought them to the doctor or to the hospital because they’re, you know, let’s just say their arm is broke right? So, your arm is hurt. Yes. And the doctor and nurse is able to help your arm. So that’s why we came here.

And then play is huge for toddlers, preschools, school age, even adolescents we use play, a lot of children don’t have the words to communicate when something’s wrong with them or they have questions but through play we can help cover some of those misconceptions they may have about the hospital or about the doctor’s office. I always bring in some kind of play equipment with me whenever I’m doing that. Yeah. Whenever I’m doing the session with a patient and it’s amazing to see where they will, let’s say grab the syringe cuz we could play with real medical equipment or toy medical equipment and they start putting the syringe in, you know, the teddy bear’s leg. And so, I ask, oh what is that? Or what does it do? Or I wonder if that teddy bear is feeling sick. And through that play I start to discover, you know, what they were having fears of or what they were having misconceptions about and that can kind of guide that conversation. And it’s always amazing too to see what children already understand or what they’re fearful of or what they have a really concrete understanding of. And as you know, children get older, they start to obviously process and understand more and just having that preparation ahead of time is super helpful.

So, you know, making sure that if you have a doctor’s appointment coming up, start talking about that doctor’s appointment ahead of time, talk about where they will go, who is gonna meet with them, who is gonna take care of their body, why they have to go to the doctor if you have any information about what’s gonna happen. All of those things will help them feel better prepared and Okay. You know, in turn should also help with compliance at the doctor’s office cuz a lot of parents have that fear, right? Will my child get under the chair or run out the door? But research shows and my work as a child life specialist shows the children that are better prepared ahead of time are actually have higher coping and they’re more compliant whenever they’re actually in the situation. That’s so interesting. Yes. I’ve had a runner out of the door a couple times so I I understand that where I’m like, now where’s she going? Oh my gosh. So yes, that’s so, but I, that makes total sense that like preparing them, going back to like being honest with them, here’s what I know that that is, it seems like it would also like lower your anxiety, their anxiety, like all of it and make them feel like you’re a team that you’re going into this together. I love, I love all everything about that. Yeah. Yeah.

And I always, you know, when parents are asking questions about it, I’m like, it’s just like us, we like to be prepared as well. Like, you know, I’m not a super huge fan of the dentist and, but I like to know, okay, what exactly are they gonna do with the dentist appointment? What time is my dentist appointment? What hygienist am I gonna meet with? And so that helps me feel more at peace. So just like adults as well, we like to be prepared of what’s expected of us so that way we totally know, know exactly what we’re gonna do. Yeah, I love that. So, if, if we’re there and like I just mentioned, I’ve had a runner, she’s do, she does better now, but I’ve had a runner so let’s say that we’re there at the appointment, we’ve prepped our kids and, and what are the best ways to kind of like bring our own anxiety down while we’re also supporting them through this medical encounter? Yeah, so that’s a great question because I, I know too for, for me I also was anxious when my daughter was in the NICU, and I knew all of these things we always joke and say you can’t child life yourself but Yeah how do you Exactly. You need help. Yes.

Well, if you’re somewhere that has a child life specialist, definitely request for them to be present with you and if not, I think preparing coping techniques ahead of time. Ok. So, I have a lot of families that I work with that have multiple doctor’s appointments outside of the hospital where I meet with them and we came up with a coping plan. So, it’s a sheet of paper that they have that they’ve laminated, that they bring in their backpack to the doctor and it is just a list of things that work well for their family. So maybe it’s taking five deep breaths, listening to a certain song, bringing fidget toys like pops or whatever, you know, maybe calling grandma FaceTime before they go in and that’s just a firm concrete plan that they can go back to whenever, whether it’s the parent or the caregiver that brought them to the appointment or it’s actually the patient they can pull out that and even some families bring like a backpack filled with other additional coping techniques that they may need that are just outside of deep breathing, like actual material items that would help as well. Yeah, I love that. I think that’s so smart and it’s true like in the moment for me as well, like everything that you’ve kind of prepped yourself can go out the window just have that laminated it’s right in front of you.

It’s the same as like the notebook idea, like can’t hurt to have that and even just to have that like bag of like tools that are right there at your disposal and even if you’re going through, I’m like, okay, I tried this, this didn’t work, we’re gonna try this one next. You have it right there. And it almost like, I hate to say it, I don’t know a better way to say it, but it almost like gamifies it instead of it being such a tour of like okay let’s get the fidgets out next. So, I love and I feel like that would bring down anxiety and you know, everything that you’re just like so prepared. So, on that note, for a parent dealing with personal anxiety, because I know a lot of parents out there have their own medical trauma that they are dealing with. How can we as parents not pass that on to our kids in that moment if we’re feeling it ourselves? Yeah, that’s a really great question. I think figuring out where that anxiety for the parent is coming from, like what the root cause of it is super important and focusing on that whether it’s in the moment but if also if you can figure that out before the appointment will help you.

I know a lot of times parents may have some anxiety because they don’t know everything that maybe the doctor’s gonna share or maybe they don’t want the doctor to share something in front of their child. Yeah. Or they’re worried about how their child is gonna act. First of all, give yourself grace going to the doctor, or the hospital is really stressful. There’s lots of components that go into it that are the unknown. Even if you have all of these tips and tools, there’s still things that are gonna happen. Yeah. So, giving yourself grace is super important, but also knowing that you’re the best person to be there with your child. You’re the best advocate, you know them the best. So even if you’re feeling some sense of worry or anxiety, it’s mean. It means because you care so much for your child and you wouldn’t feel that way if you weren’t, you know, their number one fan and their number one advocate in that moment. I know something too that could be helpful is calling ahead and just talking to the staff and asking them questions ahead.

And some of our families even will call the hospital or I’ve had families too that have called their primary care physician and said, you know, these are some things that we’ve been working on and so whenever we come into the room, I’m gonna bring this laminated sheet that’s the coping plan and I want, you know, your staff to be aware of it. So can everybody review it before we come in, so you know what we’re gonna be doing to help support my child. Okay. And I would say, you know, at our hospital we’re very receptive to that. We wanna do what’s best for the child and for the family. And so other establishments also would be receptive to that cuz they wanna be able to help you and make sure that you feel comfortable as well. And then yeah, I love that. Yeah. And just making sure you know that they are aware of any challenges that you’re also experiencing so they could help ease some of that worry that you’re having before the healthcare encounter even gets here. Yeah, that’s huge. I think that that’s really good advice. And it’s funny, I honestly didn’t even, like, this is probably dumb, but I haven’t even thought of calling ahead and like asking them to be on the same page and, and like letting them know, hey, this is some, this is a point of anxiety for me for my child.

This is what we’re doing for it and here’s how we wanna like prep everyone so that they know too. I think that’s huge, especially because some of the stuff that we’ve had happen like has frustrated the medical team when we haven’t known them. Like if it’s not a star pediatrician or the nurses that we know, they’ve been frustrated with my daughter, which has made me frustrated at them where I’m like, you need to pull it together, you’re the, the grownup here. But that gives them a chance as well ahead of time to like, no, to prepare themselves as well, which feels really fair and grace filled instead of me being all mad at him, you know, like you guys figured it out. Yeah, I think that’s so smart. So, oh, go ahead. Sorry. Well, I was gonna say it’s not dumb at all to think that, to not think about calling because most people would think, okay, my doctor scheduled this appointment, I’m gonna listen to the doctor and go, right. You wouldn’t think like, oh I should call ahead ask questions and, but we always encourage parents that if there’s anything that you need to communicate to the medical team, let us know. Give us a call ahead of time.

And a lot of times for those coping plans that I was talking about, they can upload that to your child’s medical chart so that way it would be one place, and everybody would be able to view it. Even if somebody came in, you could say, all right, I’ll just use myself as an example. This is my daughter Dottie. We need for, we have uploaded her medical chart and we have her coping plan in there. Can you please review that before you, you know, provide any kind of service to her. Yes. Brilliant. And I just, Dottie is the cutest name. I’m like, that’s my daughter Dottie. That’s the cutest. I just have, I’m going off course here, but I have to say something. Thank you. So cute. Oh my gosh. Well, I got see a picture of her, no one else can see it here yet, but maybe it’ll be on something but she’s just a dolly. Yes. So, what are some great ways that we as parents can really let our kids know that they’re being heard and like empower them to know how to speak up for themselves in these moments? Yeah, one way that I do it in rooms, whenever I am a child life specialist in the room and the doctor, the nurse in there and they’re asking the parent the question like, well how is your child feeling today? I always direct that back at the patient.

So, I’ll use Dottie as an example. Well, she, you know, she’s seven months so she wouldn’t be able to respond. But let’s say she’s older and I would say, well Dottie, why don’t you tell the nurse today how you’re feeling? And just kind of push that back on to the patient. And so that way they feel empowered to also answer something that we do a lot in the hospital too is make all about me sheets. And so, it’s all about the patient. So, it’s the patient’s favorite color, their favorite movie, their favorite snack. And we post this in the patient’s room and that is a really good reminder for the healthcare team to have quick ways to build rapport with the patients. Ok. So, they could go in and say, oh your, you know, your favorite movie is Cars. I love Lightning and Queen. And it’s just a good quick way for them to build rapport and that trust with the patient. And then once they start having just that normative conversation, that rapport gets built, the patients start to talk to them more and they feel empowered to share more about their healthcare experience and what’s going on with their body as well. Well, and I love it because they’re, you’re giving them permission from the start to like be who they are. Yeah. So, you know, they get, they know they get to be them and then can move forward.

So, another question, and I should have asked this like a little earlier when you were talking about like fidgets and you know, your whole plan and bringing that, are there other things that people can, should think about bringing along with them that can, that you know can help? I know you mentioned like that you have a stuffed animal and like are there any other things that you see this helps every time? Yeah. Or maybe things that you shouldn’t bring. I think the things that work the best are what’s comforting to the patient. And so, we, I always go in and I ask family members, did y’all bring any comfort items for home? Okay. Or is there something that your child is comforted by that I could bring by? A lot of major pediatric hospitals receive very generous donations from their community and so we’re able to bring in a lot of similar comfort items that children would have. But anything that is within your routine as a family is super important to have in the hospital because kids and adults, we thrive off of that routine and that structure. Huh. So, if we can keep that as similar as possible in the hospital, that will also help their coping as well. So, any like lovey or blanket pillow that they use at home, feel free to bring that to the hospital. That’s great to have there. Okay, that’s great. Super helpful.

Yeah, we have our like toolbox of distractions that Yes. That help. That’s, but she’s help, she’s old enough now, she helps make it. But yeah, we have our fun things and it’s always very sad when we don’t remember them. But yeah, the staff are always more than willing to help bridge that gap for us. So how, how should we as parents help our kids process what they’re, they’ve gone through and really help them regulate after their medical encounter That, I’m glad you asked that because that was something I was also going to touch on cuz we were talking about in the moment, if you’re feeling really anxious, your child’s also overwhelmed overstimulated. Yes. And let’s say they have to get an injection and you know, you’re like, okay, I did everything I was supposed to do. I went through the coping plan; they still were not able to regulate their emotions in that moment. That’s okay. Because you can after debrief with them and process with them and get them to return back to baseline. We as child life specialists always say, if we can get a child to return to baseline after any procedure, that’s a win. That’s huge because that’s the time that we can process and talk with them about. I love that. That yeah, you went through that experience.

I can’t feel what you felt, so you tell me what it felt like to you and let’s think of ways to make it better for the next time. And also goes back to that honest conversation. You know, maybe there was something that happened because healthcare is ever changing, right? Sometimes there’s surprises in healthcare we try really hard to make sure that that doesn’t happen, but that’s not always the case. And so, after, you know, being honest with them saying, I’m sorry that I didn’t tell you about the second injection. I did not know that that was gonna happen, but next time mom is gonna ask more questions to make sure I have all of the information they needed to give you that second injection because your body needed more medicine at this time to help your body feel better. Tell me what that injection felt like to you so that way I know how you felt and that will help them begin those conversations and processing what exactly happened to them. Yeah, I love that. That’s really, really good and simple and nothing crazy but just gives, I mean again, is empowering them and helping them process and that’s what, you know, helps bring them down and is really a beautiful, I can be a very beautiful moment I would think between Yeah.

You know, a parent and their child and building up more and more trust, you know, not just medically but with other things that are hard. Yes. Yeah. And it doesn’t, you know, a lot of parents will say like kids that I have worked with over an extended period of time, they would come in and you know, maybe they’re hiding under the chair, and they don’t, we call ’em pokes in the hospital but don’t wanna get that poke. And then the next visit they are sitting on the chair but they’re still screaming, crying. And then by the fifth visit, you know, they’re giving the nurse their arm to put the tourniquet on to get the poke, but they’re still screaming, and the parents are like, I feel like such a failure, my child’s still screaming. Well, you know what, think of the progression that we’ve done and screaming is okay as long as they can keep that arm still and they’re able to regulate after and return back to their baseline of playing and wanting to leave the hospital and go play with their friends after we’ve made huge progress. And so, I think as parents, you know, we have to remind ourselves like, you know, the small victories in between of what they are doing really well in those moments and that crying is okay. Yeah. You know, lots of adults cry whenever something happens to them at the hospital or the doctor.

And so, making sure that, you know, all of their emotions are validated and what they’re telling us we’re actually listening to all of those things will happen and help whenever we’re progressing through each experience as they get older. Yeah, I love that. And even the connections that you’re making with your child, like those are calming to you too. It like helps regulate the parent and the child at the same time really. That’s fascinating. Just for them to process that together and like kind of come down and have that moment. And I love that. I think it’s a good reminder cuz I, I’ve always just had that idea in my head since I was younger that that because I had some medical stuff when I was a kid, and it was like I had to be tough. I had to, you know, pull it together and not cry and, and I love that you guys are giving permission for the tears and for the fear and for those things because that’s no, that’s real and normal and how it should be. It shouldn’t be that they have to just pull it together. That’s so unfair. And, and yeah, but I, but in my stress moments, that’s a hundred percent where I go. So yes.

Even though I can say here totally I’m stressed, thankfully I don’t say it to my child, but I’ve thought it of like, oh, can you just nod like we’ve been through this so many times, can you just power through? And, and I don’t say that but I, I can feel that like creeping in. So, it is something you have to work on yourself at time. Yeah. And figure out where that comes from and that messaging in your own life that, that you’re feeling that. But I love that. I think it’s just beautiful to, to talk about that way. So, I know that just because I hear stories here and there, I know that there are probably a, some parents listening that have been facing really, really difficult medical encounters beyond like a poke, but their kids are having surgeries and time spent in hospitals and I know you’ve lived that and like, we kind of touched on this earlier as far as some of the resources. But for those deeper things, maybe they’re in there for a while. What resources are available to them if they’re in it, if they’re going into it and then, you know, is there someone specific that they should ask for at the hospital? I’m assuming that would kind of be your role and if there isn’t someone that’s, that is like you, who is there to advocate for them?

Like what does that look like in that kind of bigger, broader sense? Yeah, so in the hospital there is a typically a psychosocial team and so their whole focus is on the family. So most major pediatric hospitals will have a child life specialist, a social worker, and a chaplain. Normally also like a psychologist and it could be also a play therapist, these healthcare and they’re all like on the same team. Like they all kind of work in tandem. Okay. Yeah. And so, you know, our goal is to focus on the psychosocial aspects of the hospital and the stressors that it brings. And then, you know, the doctor and the nurse, they focus on healing the body. We’re focused on healing the mind and the heart and so, you know, and those go hand in hand, right? We’ve seen kids that actually are admitted longer due to anxiety or depression symptoms of being in the actual hospital. And that’s where our role is so important. And so, I think asking for any of those team members would be really, really beneficial. But then there’s also lots of, you know, different nonprofit and organizations that help support people that with specific diagnosis that are also in the hospital. That’s something too that I can send you as well, so oh, that’d be amazing. Okay. Yes, organizations that we have worked with as child life specialists that help support families with very specific diagnosis that are admitted frequently.

But I also think, you know, doctors and nurses, nurse practitioners, physician assistants, they spend a lot of times with these families and a lot more time than a child life specialist does. You know, a nurse is assigned a patient for 12 hours at a time. And so they also can be a really, really great resource of if there are things that are outside of just what you’re experiencing medically with your child, talking to them and seeing what information they have. I feel like a lot of times families don’t wanna bother people but that they love whenever parents, you know, ask them questions about different things and you know, ask for their guidance or support on something. And a lot of times, you know, for us, we were in the NICU for six weeks and those were, we had, we couldn’t have any outside visitors, so those nurses became our family. They were the first people to meet my daughter. And so, we really relied on them and asked them tons of questions just outside of what was medically going on with her and they were really able to guide us in a way that I will cherish forever. That’s amazing. I love that.

And I think that’s so good to remember that like these people that are working with your child are there to support your child, you know, and ask, ask these questions and, and are, you know, experts in their own right and have been doing it for a long time themselves, if you like. I, I really think thankfully most medical professionals, especially people that are working with kids that are in there because they love kids and they wanna do that, if you encounter someone that maybe isn’t maybe a good fit when you’re in there for a long time with them, is there something that they can do in the moment to like say, I don’t know that this person’s the right fit? Like how do they advocate in that way? Yes. If you have a staff member that you feels like not a good fit for your family, you can request to have somebody else be on your child’s care team. Okay. And so, when I say care team, I mean, you know, it’s from nurses, doctors, dietician, whoever is coming into your child’s room. Each hospital typically has one nurse that is like the charge nurse or like the principal of the nurses. Okay.

And so, she would, she or he would be a great resource to ask for them to come into the room and you just share with them your concerns and ask for somebody else to, you know, take care of your child and that is completely okay. Ok. You know, your child best, you know what works best for your family and you know, the goal of the hospital should be for your, for you to feel comfortable with who’s taking care of your child. Yes, for sure. And I, yeah, I think there’s that idea that like, this is who you get, this is so I just thought I’d ask it. I, I mean we’ve been so fortunate with whoever we’ve worked with, but it’s like, you can’t say to them, no one feels comfortable saying like, I don’t want you anymore. You’re not the right fit. So yeah, just to have that, that’s the, that’s someone that you can go to that’s safe, and you know, without being confrontation, needing to be confrontational that you can, you know, speak up and have a voice in that moment for your kids. That’s just Yes. Yes, absolutely. That’s good to know. So, thank you. You mentioned it. I’m, we’re gonna post resources on here. I so appreciate that you are willing to like, do that for people.

So, if you’re listening and you’re interested in doing some more work around this or you have maybe a medically fragile kid that you’re bringing home that’s gonna become a part of your family here soon or you’re in the middle of it and dealing with this and this is something that’s helpful, we have that, that’ll be on there. And like if you have more questions like, please, please reach out to us at AGCI we’ll like put you through to the right folks. If, if you wanna reach out, you can email us, call us, any of those things. But just know, I think the thing I took from this that’s so special is that there is, there is help and there are resources and no matter where you’re in the process, like there’s someone there that can help you or call the hospital or like things that I wouldn’t even think of. So, I had so appreciate you coming on and sharing and sharing your expertise and, and I’m sorry you went through all that with your sweet baby Dottie and also it gives you like such a tender heart for the work that you do at the same time. So, I’m glad that you know, God’s using you in this way to reach other families that are going through it and just so appreciate you, Keeley.

Well thank you so much for having me on here and for those that are listening, I know that you know, the hospital and going to the doctor can be overwhelming and challenging, but if you think that you know you are your child’s best advocate and you know your child best and what you say really does matter, that will help your child so much more than you realize. I love that. Yeah. Thank you. That was Keeley Machen, educator and Certified Child Life Specialist. I hope you got as much out of hearing from her as I did. She’s just incredible. I think that this is a really important topic. If you know someone going through a medical encounter with their child, please share this episode so that they can hear from her. We would so appreciate it if you would go on and follow us and rate us wherever you listen to podcasts. Keep up with everything going on at All God’s Children International by following us on social media. We are on Instagram and Facebook @AllGodsChildrenInternational. Thank you so much for watching or listening to Together by AGCI.