Deonna: [00:00:00] Hey y'all. Welcome back to Raising Disabled. So today we are doing a fun little thing. We want to talk all about what life is actually like with all of our home health nurses in our house. Rhandyl's been doing this since 2017. I've had home health nurses in my house since 2021 when we got, out of the hospital back in the day.

And it is something that people ask me about a lot. What is it like having these people in your house like in the night? People are really into just what it's like very interesting, how we can handle it. Yeah. And. So we're just gonna go through everything about what it's like and funny things that have happened and how it has changed, like our family dynamic and just all kinds of stuff.

And I can start out with my beginning and we can both kind of talk about ours, but when I [00:01:00] got home, that was the weirdest part of this whole thing, was just all of a sudden. And it wasn't just nurses. I mean it was, the physical therapy, occupational therapy, all the different things.

And me and Dane had been really . I don't know, like private about our house, like we invited people over and stuff. Yeah. But not like even y'all did. Probably. So we went from just us four, not a lot of people in our house very often. To Lake Grand Central Station. It was huge adjustment for us.

What did that feel like that for you? 

Rhandyl: Yeah, so I was thinking about this before we started recording how you guys had, your family unit and family life , completely flipped upside down. And for me and my husband, we didn't have children yet, so we lived five years. Yeah. Is she too married? Just us. And yeah, we were hostess with the mostest. We had [00:02:00] people over all the time. We were gone all the time on the weekends. , We didn't spend a lot of time at home. And so. Then having Remi as our first child, so we didn't get that, bring your baby home, have a kid quiet. Yeah. So it was definitely, , a huge adjustment in a different way than you. So this conversation's going to be good 'cause it's going to share like our different perspectives. Yeah. But we have very similar feelings in the way, things progress and the way things go. But yeah, the initial part is definitely, very hard to adjust to. 

Deonna: And the awkwardness, I'm a social person. I am a chatterbox. I like to talk to people and stuff. My husband is more like, internal and he's not as oh, I'm gonna go chat it up with everybody all day. Right. 

And so I think it was even, it was really hard for him because, it was just like all of a sudden all these women were around him. And he was like, oh my gosh. Like we always joke around oh yeah, Dan's around here somewhere. [00:03:00] But like he, he has to have his alone time. Sure. Because there's just so many women I can't think of how he feels sometimes with that initial awkwardness because.

I would hate it if there were just like men everywhere. Like I would not like that. And so I have to sometimes think about that. But it was so weird at first, like especially having people in our house at night. Like to this day, if I forget something out in the living room or something, I'm like, dang it, I don't wanna have to go get all dressed back up, go back out there, do all this stuff.

But it was so awkward, especially the night nurses. But yeah, the day nurses, it was awkward too because you were having to make small talk with them in your home. All day long that that's how I felt initially.

How did you feel about that? 

Rhandyl: So initially, I think back to. Remi came home at 15 months. She was extremely medically fragile. [00:04:00] She was clamping down every few hours. Anytime she cried, we would have to bag her not breathing. Yes. So I, , just remember coming home, like getting out of the ambulance and the team leaving us there and the whole house was full of, , nursing agencies, respiratory, therapists.

And then, getting into the actual day to day, and I had been warned, the home health private duty nurses, you're going to have to train them. You are going to have to teach them everything. Everything. And that was so hard. There was so much pressure on me. And this was definitely the hardest time, and I've said this a lot, was the transition home, with Remi. Yeah. And so on top of that, sometimes I felt like it would've just been easier had I not had any nurses in the home in the beginning because mm-hmm. I was doing everything on top of teaching them.

And yeah, I was just on [00:05:00] high alert and, just trying to, that's sad, navigate, sad and overwhelmed but for the first six to nine months after we got Remi home, myself or my husband would sleep in the living room or in Remi's room while the night shift nurses were there because she was just fragile and would just do the most random things, even in her sleep 

Deonna: seconds mattered. 

Rhandyl: Yeah. And , it just took us a long time to build up that trust, but it also took us a long time to find the right nurses. And for any of you guys listening that have private duty nursing, you know what I mean by that? If you've had it for a long time, for night shift nurses, , it's definitely a trust thing. You have to make sure they're trained. But for day shift, nurses, obviously they have to be able to take care of your child well and love your child well. But , you also have to get along with them, as a friend, 

as a friend, and as a person. 'Cause [00:06:00] you are spending so much time with them. And so if there's just a vibe or something that, I learned the hard way sometimes you just have to nip it in the bud. . So that was, how I felt initially. Yeah, I was, that it would've just been easier not to have them, and I contemplated that. But now, eight plus years into it , I would never say that now. Like I need them. And Remi needs them they're. Everything, , to us and for her quality of life. But yeah. Ugh, it was a lot at first. 

Deonna: I, when we first got home, I was so sick of being around people. And I had a poor innocent nurse get assigned to us who, didn't do anything wrong. But I had to have a break and I did actually let her go. And I felt so sick about it. But it was one of those deals where it was like I needed to just be with my kid at that time. Yeah. Just me and her, because I, at the time, I thought I might have like maybe a year left with [00:07:00] her.

That was the vibe that we had been given. And so. I was like, I'm not gonna waste my last year with her, like with anyone else in the house. Like we had night nursing, but like during the day I was just like, this is my only time with her. We're not doing this. So I did do that, but I nearly worked myself into a nervous breakdown, but the funny thing about having 'em in your home and now we both know this, but at the beginning it was like, oh, like I miss my privacy. I miss, being able to do whatever I want in my own house. And even my son, yeah, it was hard. Like I had to be like, I bet, hey, you can't even go to the bathroom without completely getting dressed again, going out to the, like stuff like that was weird, 'cause he was older. But I thought my house was like my home back then, but now my house feels, it just is different. I don't even know how to explain it. It's like a. Gathering place for all these people we love and everything. Yeah, but it's, I don't know. It's definitely [00:08:00] not like a private sanctuary type. No. Home anymore. It's like a, I don't know it door, I always say it's revolving a community center here or something. 

Rhandyl: It's a revolving door. We don't even like glance when we hear a door open, like front back door. We're just like, oh, someone's here. Oh yeah, I forgot. So and so is coming over.

Deonna: Know like some of our nurses have the codes to our house. Oh, same. They know how to get in our garage. Like they could come in my house at any moment probably. Yeah. But yeah, like when our nurse Macy comes in every day, she just opens our front door and walks in and we're like, Hey. And we're getting ready to go. Yeah. And I think it even weirds out, like people who come stay with us, like our family, how unfazed we are by our nurses coming and going oh yeah, i'll stick my head out of my bedroom and be like, see ya next week. Bye. And I mean, it's like, you know, they don't need this big old long drawn out, no farewell. It's see ya. Bye.

Rhandyl: You were talking about your husband, . [00:09:00] So that was one thing that my husband was actually, prepared for because he was a nurse at the time, a floor nurse. That is true. And so he worked with 99% women for years leading up to this. And so 

Deonna: he knew the drill.

Rhandyl: Uh, he, he kind of, Yeah. That's funny. But if anybody that knows me, I am a no drama, do not. So for me to be surrounded in a lot of women, , it's actually really hard because I,. that's another part of the way that we make sure we have the right nurses is C if there starts to be some sort of drama, like it's a no go around here. And I'm very open to that. Yeah. 

Deonna: That's a good policy to have. Overall. I'm like, oh my gosh. And I don't know, you had a kid after Remi, so so you have a younger son, but something that I had to figure out over time and even with Ally too, I felt like I had an audience initially and it was so uncomfortable.

Like I didn't want to look bad in front [00:10:00] of them or ever get upset with , my kids in front of them. My son for sure, when he was younger, he started to be like, I can do whatever I want when these nurses are here, and my mom's not going to get onto me because she's doesn't wanna, get onto me look bad.

Yeah. And man we got over that real quick. I remember the first time he ever got in trouble really bad, and the nurse like, looked at him and he was like, you embarrassed me. And I was like, no. Like you acted up. , These nurses are gonna be around . I'm sorry, but like, gonna get in trouble or be told No in front of them. I can't not get onto you because the nurses are no in the room. You'll turn out to be a horrible, spoiled rotten brat. But 

Rhandyl: I bet that was a hard transition. It was hard. I can imagine. So for myself, my husband, my son we don't really know any different and I feel like we Yeah. Parent him and discipline him. We have from the beginning, like right in front of the nurses and , I [00:11:00] definitely don't hold back the, and if they have, yeah. They better not have anything to say about the way that I parent. They know that yeah. But it's just, it is awkward sometimes.

I remember, ugh, , especially when he first started his tantrums I was like, I'm still, I'm just f trying to figure out how to deal with this myself. I, yeah. That was your first go at it. He's my first typical of course, and then of course with Remi, once she started getting her attitudes she's so hard to discipline because she thinks it's funny or, it's like you're getting onto her for stuff that you wouldn't get onto. Don't poke your stoma. , Quit, quit pulling on your trach. Don't stink your finger in your, but you still have to, it's just so funny. , And I've had to teach a lot of our young nurses, , that aren't moms themselves. No, she will fool you. She will. Yeah. Like she knows your numbers. She'll take advantage of you. So you have to learn. Your mom voice and you have to be stern with her. We, our, one of our current day shift nurses, it took her a while 'cause like she just wanted to be her best [00:12:00] friend and, which is great, but you have to also like, gain your authority and let them know who's actually. So I know that's hard for a lot of our, younger nurses, , that are oh yeah. Not parents themselves yet 

Deonna: even night, like if Allie's being bad at night, like the girls who are moms are like, Hey, cut it out. Stop it right now, and then the ones who aren't moms, it takes them a while to be like. Hey, go to bed, they're all sweet. And then our other nurse who's a mom's like, Hey, knock it off right now. But yeah, with, yeah. That's awesome. With Cole, it's funny because like now we're so close to our day Nurse Macy and us and our night nurses too, but this stuff happens more during the day, but I'll, be like, Hey, Cole, don't do that. Or I'll get onto him or whatever. And he'll do something else or he'll do it again, or whatever it is. And. I'll say his name like, I'm mad. And Allie and the, the day nurse will be like, mm-hmm. oh, you know, so it's like she acts like this older sibling. She's oh girl, you're getting [00:13:00] it. They'll start laughing and be trying to cover their mouth because Uhhuh, they know him. They love him. Yeah. But they also know he is like a typical kid. He is gonna get in trouble. But that is the funniest thing that has it cracks me up, Cole they're like, oh, Cole, you're gonna get it. Mm-hmm. Or Cole will come up to one of 'em and be like, I got in trouble earlier. So just FYI like. I am in trouble. My mom's mad at me right now, and they're like, oh, no, what'd you do? And I can hear them talking. Oh my gosh, my gosh. Oh my gosh. It's hilarious. But 

Rhandyl: that's funny. Honestly, I like it be because , with Barrett, my 4-year-old, , I have eyes in a lot of rooms, so he can't get away with fyi, they into something or they'll, I can hear 'em like, they'll be like I know, you're not supposed to be doing that. So it definitely can be helpful sometimes, for sure. Even with your, non disabled kid for sure. For, they're so close, for many reasons, but that one in particular, 

Deonna: they're so close to them. There's been times where I'll hear her be like, are you sure your mom is gonna let you do that? And [00:14:00] they'll be like, oh yeah. And they'll be like, I don't know. We might have to, ah, I can hear it in the other room. I guarantee you they're trying to get away with something. But yeah. Yeah, we were laughing earlier. I was talking to Dana about how we were gonna talk about all this, and he was like.

It's really funny because we've had our nurses have, people in their homes, like they'll be coming and we'll be like, what'd you guys do this weekend? And they'll be like, oh my gosh. We have people in our house this weekend. I'm just so glad it's like back to us, like we're so sick of having company. And then we're like, yeah, that must like really suck. Having someone in your house like all the time. And they're like, okay, I'm gonna shut up now. Uhhuh, I'm so sorry. Yeah. 

But like we do acknowledge that is a thing. But yeah, we've had nurses have to have like home health come in for family members or like for treatments or things like that, and they're just like, oh my gosh, I never thought about how y'all feel about us. Which it is different 'cause we know them longer and it's more of a long-term thing. But [00:15:00] I'm like, oh, it's weird. Like it's really weird at first, but then you get used to it and it's not that bad. 

Rhandyl: Yeah. And it's funny you said earlier that sometimes it's weird for family and it is for us it's so normal now, but then if we have company, , not necessarily family 'cause they're used to it. , More but if we have friends come, stay over or just over here in general, , I'll get questions, about the nursing staff or whatever, the dynamic. Yeah. Or , are they supposed to do that? It was just like silly things and I'm like, yeah. I mean, They're here all the time. This is just our normal welcome to the Chaos. 

Deonna: That's happened to us a lot. But we're just so comfortable with him. I don't think our anybody will ever really get it. No. Even people who come see us a lot, it's 

Rhandyl: Oh, and it takes a while to get there. It does. To, to that point. 

Deonna: But yeah. One of the things that. I think people don't really think about a lot is how, you know me and you were not managers in any way. We weren't like the boss of anybody except for our own [00:16:00] kid. But the, one of the harder parts for me, and I think it's an interesting dynamic that we have with these girls and stuff, is we had to become a boss and a manager of this medical staff. Yeah. Overnight. And with no training no, I don't know. Like we had no way of preparing for the fact we were about to manage these people, multiple people. I feel like I should have gone to . Business school to learn sometimes how to Yeah. Manage people, but you can't prepare for that at all and no. 

Like how did you feel about becoming a boss of adults? It was professionals overnight, 

Rhandyl: Yeah. In the beginning I viewed the nurses as employees of the agency, which, on paper they are so did I first? Yeah. And contact directly the agency about their hours and their days. And it honestly , we didn't get coverage like we should have been getting because they weren't coordinating with each other. The nurses weren't coordinating with each other, they [00:17:00] weren't coordinating with us as a family. They were just going straight to, , the scheduler, putting in whatever they wanted. And, , that might work for some families, but it doesn't work for us, eventually. , Once we started getting , more competent,, better in general nursing staff in our home then that's whenever I started really filling the management type position and like the scheduling, at some points, I, it just got really overwhelming. For sure. Because , I remember just worrying about I don't wanna hurt their feelings. And of course I was coordinating with them, but I felt so overwhelmed with just that plus like managing. Everything in general.

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Rhandyl: It was just, yeah, coverage and the responsibility of, , the caregiving part. But once I got the hang of it and now the nurses are able to, we just let them be in control of their schedule. They get together, they coordinate their schedules, what works best for them each month. And then if there's a shift that we can't figure out, then we have some PRN nurses and then, I'll contact them and I'm basically now the direct contact with the agency. , So it's so much better now. But I remember in the beginning [00:19:00] like just feeling out of place. These people are in control of who's. Coming into my home and but yeah, becoming a boss. , It was weird, but it's transitioned so differently over the years and now I feel like I have a good feel for it. And very upfront with the nurses when they first start this is how we do things. This is how it is. If you need to change shifts, if you need to change whatever, it's easier to just come through me and then I contact who needs to be contacted , but. It is, you just, you're managing all these people. And a lot of times, and my husband and I both joke about it, but we wanna be on the payroll. I feel like we're doing like, gosh, a lot of their work. Oh my gosh. Yeah. But it's better. But in the long run we don't have to be doing all of that. But if we don't, we won't have the coverage won't, they won't be happy. So it's just worth it, , for everyone, but. Really, it's a lot of work that we do behind the scenes that no one really thinks about for sure. 

Deonna: Yeah. , I [00:20:00] was letting the agency be the boss for a while because I just was developing my confidence, in that space. Yeah. I felt like really, I don't know, like I felt like I couldn't manage a nurse. I'm not a nurse. I didn't know what I was talking about half the time, but I decided pretty quickly that I was in charge and that the agency was just the way they got their money. But it was really tough.

And even at the beginning, if somebody needed to get let go or whatever, I would contact the agency. Our friend Camden would have to let them go for us. And that's how it worked. It was like, I never did it. He always did it. And now if I have to let somebody go or something, I contact the agency and I'm like, Hey, I let so and so go, so just FYI. They're need to be removed from all of our charting or whatever. But it was hard. And I do tell all of our nurses, I'm like, technically I'm not your boss, like on paper, but I'm the [00:21:00] one that has to be happy. If I'm not happy. You don't have a job here, right? Like you have to do what we want.

And sometimes me and Dane have different policies than the agency. Like they have to do whatever the agency says. Like the bare minimum. Yeah. Which is so bare minimum. And then they have to do everything we want on top of that. That's like extra things that. Are things that, aren't in the charting, that it's the routine safety or routine Oh, yeah. Or just stuff like that. Like things that help us that are within their job scope or whatever. 

Yes. But yeah it was really hard, like telling people, at the beginning, me and Dane would agonize like in our bedroom Hey, so and so's not doing this. How are we gonna tell them without them getting their feelings hurt? , Okay, I'm gonna say this, or whatever. And now we're just like, Hey we don't do that. We do this. We don't even, I don't know, it's just like less, I don't know. Yeah. We were so [00:22:00] scared we were gonna make somebody mad. Defend. Yeah. Which we have a good group now, and you can just be like, Hey, actually, like I want you to do this instead. And they're like, okay. Like they don't get like all butt hurt or anything. Yeah. So that's nice. But 

Rhandyl: I feel like all the years that we've been doing it, I, there's the vibe I get with private duty nurses at least in my experience, , in the beginning especially, we got a lot of older nurses that have been doing private duty nursing for a long time, for 50 years, or they were like in their retirement phase where Yeah. They couldn't kick it on the hospital floor anymore, they went to a more, quote unquote laid back position, private duty nursing 

Deonna: only, not 'cause it's Remi or Allie Yeah, yeah.

Rhandyl: And they don't have a, , call button or respiratory or whatever. But they would come in, especially the nurses that have been, doing the home health situation for a while. They would come in and there wasn't another nurse to train them. It was me or my husband, and they didn't take [00:23:00] feedback or education from us as parents. Very well, because they were a nurse. They knew what they were doing, but they didn't know what they were doing. Because you've never had a patient like Remi? No. We know her best and it was really hard, and they were really thick skulled and we ended up, a lot of them, we ended up having to let go. And what we've found that works best for our family is newer nurses, or nurses that don't have any private duty, nursing experience previously. Or just someone that is open to being taught new tricks, if that makes sense. Yeah. Like receptive to it. 

Being receptive. And just knowing that they don't know what they're doing and thankfully now we have nurses that have been with Remi for years and they can train and I always like it when the nurses train. 'cause I feel like the new nurses, they would prefer to have a nurse train them versus the parents. But for a long time that wasn't the case and it was always a weird [00:24:00] dynamic. Yeah. Especially with nurses with, years of experience. That was always a tough one. 

Deonna: Oh yeah. You're coming from no medical experience. Teaching a nurse who's 20 years older than you. That was happening with us a lot and it was really difficult. I would say, Hey, I want you to do it this way. This is how. In Houston, they taught us to do this. And they'd be like that's not how we do it here in Lubbock. And I'm like, yeah, I know, but this is how you're doing it here. That's what we're going to do. And if you, and at the beginning I wouldn't say these things, but now it's right out of the gate with everybody we hire. I'm like, this is how I do things. I know what I'm doing. That is my vibe. Yeah. Like forever. 

Rhandyl: Yeah. And the lazy nurse so , oh my gosh. We had, those were the worst. We, in the beginning we had a night shift nurse, and it was in the beginning and it was just rough in general at night. But I remember, , my husband was doing the, on the couch shift and I [00:25:00] was trying to sleep. In our bedroom, and I get a call at three in the morning from the nurse that could have just went and grabbed Cole or didn't need either one of us at all. But it was because, Remi had a BM and he needed help at 3:00 AM like, I remember just being so frustrated. That was the That's hilarious. But it's, there's little things like that. I'm just like okay, you've been a nurse. You can't change a two year old's diaper in the middle of the night. Come on now. Yeah, like we're barely sleeping. 

Deonna: Lazy nurses are my biggest like instant no. Yes. Like, And you can tell pretty quickly, like me and Dane always joke around when a nurse doesn't work out. Like one of us will be like, I so saw that come in. Oh yeah, I knew it. You always try to give everybody the benefit of the doubt and try to, make it work. And we've had so many good ones that don't work for us anymore, for a million different reasons, but, oh yeah. [00:26:00] Yeah, the lazy ones. Oh, me and Dane are both, and the sleepers very hardworking. People. So yeah. When somebody's lazy, I'm just like, no. 

Rhandyl: Oh yeah. Cole and I are too. We can't deal. We just, we've had a lot of, especially in the beginning, we would have night shift nurses that would just be sleeping at one night. She just kept, consistently, falling asleep. And we had talked to her about it, and please don't sleep. But she, my kids good. She was, She was so great. She was so great with Remi, but she just couldn't stay awake at night and one night she got so comfortable, sprawled out on the couch asleep that Cole went in there to try to wake her up. And she didn't wake up, which would be so awkward. 

And he, so thankfully I'd missed all this. I was asleep. And he said he went and unplugged her pulse ox machine. And so the pulse ox machine starts going off. She still doesn't wake up. So then disconnected her vent really fast. And then the vent, which makes a louder noise, went off. And that woke her up and he was like, okay, look like [00:27:00] this is gone long enough. We're gonna have to let you go. Situation. , That was years ago. And 

Deonna: did she leave right then, like in the middle of the night? 

Rhandyl: , I can't remember, but it was definitely her last shift.

Deonna: That's so awkward. Oh my gosh. Yeah. We have had sleepers. We're Dan, and this is like the craziest thing 'cause my husband works nights, but he doesn't work like a seven to seven, 12 hour. He goes in like at four and he comes home late at two or three in the morning and he has walked in on nurses sleeping and he's I try to bang around and make noise to wake 'em up. And they usually do. And then you're like, okay, this is awkward, but what's crazy, and this is something that you know a lot of other parents understand, is like sometimes, you know, a nurse kind of sucks and you still keep 'em because you just were so desperate for any sort of help. So desperate. Like it was the most desperate I've ever been in my life. So you're just like, okay, yeah, they did fall asleep, but like need, 

Rhandyl: It's so hard to find nurses in general when you do. Yeah. It's yeah. We've had that [00:28:00] experience where we just let 'em stay too long because we were so desperate. For 

Deonna: now we don't like, no, neither. Neither we, if we don't even, like we've interviewed a couple girls or let somebody do one shift and just been like, oh no, that is not, you can quickly pick. No, I'm not even gonna put up with it.

Rhandyl: Yeah. We can quickly pick up on a vibe now it's just, 

Deonna: we had a nurse. Work one shift with us, , a while back. And it was so funny because the next morning my mom and dad were staying with us that night and Dayton had gone to work and I told my mom and dad, I said, it's not gonna work out with this girl. I'm gonna have to let her go today. It's just not gonna work out.

And I said, nothing about her, just she can't do this, she can't hack it. And she quit within the next 30 minutes. And it made me laugh so hard. I just knew, I was like, this girl can't hack it. And she knew, but, and she couldn't. But it's, it is really funny. You become very close friends to these girls,

but they are like your employee at the end of the day. It's weird. Yeah. [00:29:00] It's such a hard, it's such a hard dynamic. We'll talk about that here in a second. But the next thing we were talking about, and we already talked about this a little bit, but just the trust, people think that we immediately trust these girls coming, our guys, there's a lot of male nurses too, but you just trust these people right out of the gate because they graduated nursing school and yeah. Yada, yada, yada, whatever.

But I used to trust them right out of the gate. And then I very quickly got burned so many times in a row that I was like, are they all dumb? Like I really at the beginning was worried about that. And then you start getting good ones and you're like, okay. I just got some duds, but you have to develop trusts. Like it's, people think like hard, it's hard to find a babysitter. No. And it is hard, there's a bunch of weirdos out there, but trusting somebody to take care of your kid. And like medically.

Yeah. And for them to stay alive, a friend as, not do something really dumb. We both have [00:30:00] had nurses do really dumb, should lose their nursing license type things. And they didn't, but that's a whole nother thing. Yeah. But, letting them into your house and your trust and you're, it's so hard.

It's how long do you think it took you to start, like really full on trusting them? 

Rhandyl: Two years? 

Deonna: Or do you, do you trust them still? , 

Rhandyl: I do now. Yeah, I've had nurses come and go that I was like, okay, , I just get this gut feeling after doing it for so long that Yep. There's just this weird vibe but I would say , it took probably two years, honestly. For me to. Fully be okay with I'm gonna run to the grocery store. I'm gonna run to the gym. 'Cause for, oh gosh, I think it was about three years after Remi came home,, I did not work. I was her full-time caregiver plus, the nurse manager situation.

[00:31:00] But so I remember the very first day shift nurse that I got that was so amazing, competent. Amazing. Was so down to earth. Her and I got along so well. She was wonderful with Remi. , That was when I was like, oh my gosh, this actually can happen. This can be, she's such a godsend. They're out there. Yes. Yeah. And, oh, we just loved her. Her name was Nancy. Oh my goodness., It was just like a breath of fresh air after months of. Not fresh air puff. Yeah. So she was like the first nurse that , we had been home for three or four months and it was the first time I had left the house. By myself, without Remi. 'cause the only other times were like taking her to the doctor.

Yeah. Anyway, she was just amazing. But, she was in RN school, like doing a transition from LV N to rn and when she got her rn, , she had to make, which we've had this happen now a lot, but this was my very first experience. With a nurse choosing to leave. Yeah. Which [00:32:00] for her own, financial, family, everything. Yeah. It was the best life. It's life, life. Yeah. 

But I just remember, and then my sister was in college at the time and I remember. We were out on a walk together, , Remi and myself and Nancy, and she told me, and I just started bawling. It was like a breakup. It was like yeah, the hardest. I remember when we finally got into the house, my sister was there, and I remember just falling to the ground bawling. And my sister was like, what in the world? And I felt like I had finally found this person that could take care of Remi and understood her cues. And that I felt safe leaving home with. And then I find out, she's leaving. And I just remember that was so hard.

But that also made me realize right then and there. , I had to harden my heart in a way. And guard my heart and my feelings. That's when I realized, this is, at the end of the day, this is [00:33:00] their job. This is my life. This is Remi's life. Yeah. Your family. This is our home, but this is their job.

And of course she was so kind, and she, it's not, she gave us a lot of It was, but it was so I remember that she did it right. Was so hard the right way. Yes. She did it the right way. Yeah. And but we've had very similar things happen now. Numerous times. Yeah. But that first time was just like a knife to the heart.

I remember just being so sad. But then it's you know what, this is gonna happen. You're gonna find another good nurse. And we have, and we will continue to, but it's always. It's always hard, but it's never gonna be as hard. It's the first time it was, oh, it's so roughs. 

Deonna: I, when you said it was like a breakup, I really never had a big breakup in my life. It was like, oh, you like guys you went on dates with and then you were just like, oh yeah, no, we're not going out anymore. But I've had nurses leave that felt like that, like a, like hole in your [00:34:00] heart. Knife twisting sadness that lasted for weeks. Yes. Like I would be moping around.

My husband's like, okay, you have got to get your crap together. And I'm just like, I'm just so sad. Because you do get so close to them and if it ends tough or it was like at a bad time or different things like that. It's just, it's so difficult, but I, it is hard I think the faster you realize this is their job.

They don't have to be connected to you for life. And it feels like they should or whatever, but even nights when a nurse calls in, I give myself like an internal pep talk. Like this is my child. I have chosen to have this child. I am going to take care of my child. It's not this nurse's. Problem right now, if a nurse like habitually calls in, I'm like, girl, you're done. They're done. I cannot do this. But there's very reasonable . Responsible reasons nurses miss or go on trips. Yeah. Or like they have a life. Of course. 

So you have to remember your nurse, like [00:35:00] our human beings, they have a life. But yeah, we have very, because we've been through so much like horrible trauma, we don't always have very rational responses. No. When this stuff happens, like I had very irrational responses to some nurse, us parting ways like a few years ago. It just hurt. I was like, a big old mopey, crazy psycho mess.

We've been through so much bad stuff, we just sometimes can't, be normal about that. Yeah. But I do think I think it is good. I, our, my nurses understand, like I've talked to them, I usually have this conversation with all of them within the first few months. I'm like, if I leave her alone with you, I trust you. Just do what you think is best, in any situation. And I've even told all of them if she dies and she was under your care and you did your [00:36:00] best, that's all you can do. That's the level of trust we have to have with them. It's, yeah, like we really, it's very high likelihood that our child will die with us. Not around. There's just, statistically it's very possible. Yeah.

Rhandyl: it's hap it's almost happened multiple times while she's at school. Yeah. You just have to, I had to mentally make myself understand that and be okay. And just knowing that. Yeah. Because it's not like we're not in control. No. And once I, we've talked about that a lot. Once I finally realized and was able to just accept that I am not in control of everything that's going on, and especially when, we were talking about letting go, I was thinking back to when we first put Remi in school. Which is crazy to think she was three. I remember thinking there's no way she's ever going to school. And then I've told the story a little bit, but,, she had never really been around kids that much other than cousins and stuff. [00:37:00] And, . It was the summer before she turned three, and we had been told by ECI, she can start school at three with a, , pre preschool for kids with disability program through the state. And I was like, yeah, no, that's not happening.

And then, , she had such a bad summer that year, it was after her surgery and she was just having really bad CO2 stuff go on. I don't know, it was just a bad summer. And the end of the summer one of my nephews had a birthday party and we took Remi. She was healthy that day and we took her and I had not seen her that happy maybe ever. Yeah. And around all these kids, like she was just lit up. And I, that day was like, okay. And I called my husband, I was like, I'm gonna call and get her enrolled in school and she'll just do like half days, three days a week.

But I remember the. First day taking her there and dropping her off with her nurse. Yeah. And then having walk away and walk out, back out to the car. I bawled and balled. I imagine it as what first time parents feel [00:38:00] like when they have to take their kids to daycare for the first time and go to back to work.

Deonna: But you don't think your kid's gonna die, gonna die when they go to daycare. You think they might cry or be like, I wish I, my mommy was here. You're not like, die. 

Rhandyl: It was horrible. , But then the pictures and videos that I got, it was like, this was the best thing like that you could've ever done. One of just the letting, letting go. Golly. It's hard. 

Deonna: One of our old nurses, when she became a mom, she told me like, I didn't realize how much you trusted me until I had my own kid. And that's like a huge deal because I, she had a healthy kid and she was nervous about people watching that kid. And she's like, oh my gosh. I, you trust me with this kid that could literally die, to any moment. It's crazy.

And I think it's too like we trust him with our kids like medical care and stuff like that. But I feel like it gets to the point too, we trust them letting them into our life. Yes. Like even like my husband who you [00:39:00] know, is less oh, I'm gonna just invite you into all my thoughts and feelings and personal life. Like they know all, they know everything about me and him. They know everything about Cole. Like they know all the horrible other things we've been through. Yeah. They know all the good things.

And so it's crazy letting them in like that. We feel very connected to them. Like yeah. Like family and that's what we're gonna a hundred percent. Yeah. Next. I mean they become, all of allie's, nurses pretty much know her better than most of our very close. Family members do. And like when they buy them birthday presents, it cracks me up. Like they nail it. They know. Yes, I know everything she likes. You're like, okay. I wish I would've thought of that idea. Okay. Whatever. I agree. 

Like they just, you trust 'em and you, they, they do such a good job and they now, I feel like they're just like our found family in a way. Oh yeah. Even the ones who don't work for us anymore, or whatever I still [00:40:00] stay in contact with most of 'em and, , I still love 'em. Like they, they helped me during a horrible time in my life. I still love everybody who worked here and everything, unless they just did something like flat out crazy. But 

Rhandyl: yeah, I don't love them all, but I love most of 

Deonna: Yeah. But no, they're, they really do become like your family. It's crazy. 

Rhandyl: Oh, a hundred percent. We have a few nurses that have been with us for five plus years and they've seen, me go from, with just Remi. And then me having my son and now , raising my son and they know all of my family, and they travel with us back home, they travel with us wherever. , And we just have these funny inside jokes all the time, and we can we're, honestly like really close best friends and on top of that, they're, my daughter's best friend everything.

Yeah. I don't have to worry about, , when Remi goes to school, like they will advocate to the therapist, to the teachers. No, this is, don't let her almost too much sometimes. Yeah. Don't let [00:41:00] her. Yeah, for sure. But , they know her abilities and her capabilities and they don't let her fool them, they're such a necessity now. , And such a blessing yeah, I don't know what I would do without them.

It's just like they are a part of our family , even though at the end of the day, their job, like once you find a good crew, you know the people that you want in your life with your children and you know that they're going to respect you enough that if they need to move on to another career or something we had a long-term night shift nurse, , that gave me like a two months heads up. Yeah, that's really nice. This last year, once you find that good vibe, , we've both had horrible experiences with not so great. Situations.

Even for me, I had a nurse that was almost six years with Remi, and it ended very odd and . And it really shocked me and still to this day does. But, it's like a [00:42:00] evolution in a way of how you go about this nursing in your home dynamic, I openly, when we're training new nurses, I am just myself, completely myself. Mm-hmm. I'm not sugarcoating anything. This is how things are done. You can use our oven, stove, top, whatever. Mm-hmm. You want that. Your home is our home. But I also am like, this is not a hospital. No one's coming behind you to clean up after you other than me, and this is my home. Like things like that. Yeah. And you don't have time. It is very open book.

And, I feel like that is probably helpful because by me telling someone that they're gonna know really quickly, like where they stand and what our expectations are. And so if they don't want to do that, and if they don't feel like they can meet our expectations or Remi's care Yeah. Then they probably won't stick around very long. And that's, good. , You know,

but no I love. All Remi's nursing [00:43:00] staff right now. It's just like, yeah, they're all part of the family and , some of them will come over on their days off just to come hang out or if there's something going on. Especially in the summers, like if we're gonna have a pool day, the nurse doesn't have anything going on and they'll, be like, oh, I'll come over and hang out. I'm like, it's your day off. And they're like, so I wanna be here anyway. It's just, it's awesome. 

Deonna: Yeah, they, it is like, the lines are so blurred between like employee and just like family member, friend, like just Yeah. Bff, Allie calls her nurses, her BFFs and It's true. And it is crazy. Like they do become very protective of your child. Like I've had multiple instances where day nurses got into little, altercations with somebody over something and you're just like, oh, crap. But yeah, I had a nurse one time. Yell at a dad out in a parking lot because he was parked in the stripe zone, like where the van ramp is supposed to come out. Yep. And I'm like, okay, like this is cracking me up. Like you're getting out and like screaming at [00:44:00] some large man. She's teeny and you're just like, she didn't care. She's what do you think you're doing? And just like yelling at them and that's awesome. A's yeah, she screamed at a guy today in the parking lot. I'm like, oh, okay.

But we've had a nurse, somebody was parking in the handicap spot every day she takes a photo of the girl's license plate and posts it on Facebook, like whoever this girl is, she needs to cut it out like a publicly, humiliating this person. And that person was like, that's my car. Take it down. She's I ain't taking it down. You quit parking in my spot.

And it's so funny 'cause that's not their child, it's my child. They, I do feel like they're an extension of me, which I am much feistier, little crazy tiny fighter. Oh, yeah. Than I used to be. But sometimes they do that for me and, I know no one's gonna cross ally while they were on the clock. So it's 

Rhandyl: yeah. But yeah, we've had instances like that at school where they'll get into a little, confrontation or they just don't like something, and they'll come home and tell me like, Hey, this [00:45:00] therapist, I just don't think it's like a good thing, or, this aid or whatever. And so then. I'm able to take deal with it, take it to the school and be like, yeah. And so , we have little inside spies at school, which is awesome. 

Deonna: We do. And it makes me happy that I don't wish my kid was, it sucks. Our kids are so medically fragile, they have to have a nurse that goes to school with them. But I have heard stories of other children at, my kid's school or places like that, where that kid does not have an inside. Person and they aren't treated well. And then who's there to tell the mom, yeah. 

Rhandyl: Who's there to advocate for them? 

Deonna: And so then I find out about it and then I call the school and I'm like, Hey, so and so is not being treated very well. . Yeah. So it's difficult 'cause you do have that inside look and sometimes that's hard.

But I do think it's interesting too, 'cause they experience our trauma alongside us. Mm-hmm. I mean, Like whenever, like the day my brother died, there was a nurse in my [00:46:00] house and I remember I'm like laying face down in my closet, having the biggest meltdown in my life, and. I hear Dane go outside and tell the nurse, she's or Dane was like, Hey, you can go. Deonna's brother just died. You don't wanna be here. Yeah. This is not, they're in our homes. So much stuff's bound to happen. And it's really hard. And we've been there through all their bad stuff, through family's deaths. Oh yeah. And through like good and bad. But we've been through so much bad stuff with them too, where Oh yeah. They love us and we love them. It's just such a, it's such a weird relationship, but it's really cool too. 

Rhandyl: Yeah, both of just within the last year, a couple of our nurses each have had, weddings that we've been a part of and invited to. Mm-hmm. And yeah, it's just definitely, such a positive thing. We can talk about the negative stuff a lot, but like it is a cool thing. It is all together, for our child's needs and for their quality of life , it's the best thing. I would've never [00:47:00] said that my first two years of private duty nurses in the house, but Oh yeah. It is, it has become, such a godsend for sure. 

Deonna: It's, yeah, it is amazing, like the relationships and everything. And it's funny, we were talking the other day about, we were talking about what each of us knows about our nurses. And my husband was like, I know what cars they drive. 'cause I don't know the cars. If you had all my nurses cars, I would be like, is that Tanya's? Like I, which I do know what Tanya's is, but I'm terrible at knowing the cars. That's funny. And d Dane knows all their drinks. He'll be like, oh yeah, like Melissa drinks that energy drink. I'm like, how do you know this? What? He just knows all their like stuff. And Cole basically knows all their shoes. 'cause Cole loves shoes, so he'll be like, oh yeah, Tanya wears those shoes. Or the shoes. I'm like, how do you know that shoes there's, there's a shoe 

Rhandyl: obsession to He always has been. He'll know everyone. He, I mean he's four. Yeah. But he knows. Maybe that's a boys he has known for a while. Like [00:48:00] whose shoes are whose? It cracks me up. Allie and the house shoes. They all have house shoes. Oh, do they At the house? House they house always. I have a shoe rack for all their house shoes and Oh, that's such a good idea. Um, Yeah. , Because I always make them take their shoes off at the door. Yeah. They can't come into the house with their street shoes on. And so I always tell them like, you can bring a pair of, house shoes and just keep 'em here. And so I have a shoe rack for them. And my son will be like, that's smart. These are the, but it's funny, 

Deonna: Allie obviously looks at them the most, like Allie knows all their clothes and outfits. She'll be like, is that a new sweatshirt or is that a new ring? Like she knows all their jewelry, the accessories. She knows all their tattoos. She'll tell me like, so and so got a new tattoo. And I'm like, oh okay. But so cute. Basically, they basically, I always tell my family, I'm like, yeah, but I know all their secrets. I know their drama. I know their everybody, they hate. I know everybody. They like, like I know everything. Yeah. So I was like, I get to know all the fun stuff. Sorry guys. I don't know what to tell you, but and they know all of our stuff too, [00:49:00] like me and them.

Do you ever just you'll have like family over Yes. Or somebody in the house and you'll look over at your nurse like, we need to talk about this later. They know. This is something that is going to have to be, yeah. I don't know. Debriefed to later 

Rhandyl: or like a side convo about a, yeah. Another employee that comes in, like a therapist or or a family member that you've, vent about.

Deonna: It's funny or something. Someone like says something unhinged. Yeah. Oh, they know everyone that I like, like they're, it cracks me up. They know every detail about my childhood, all my friends, and it's, yeah, they know. We all know way too much.

 Yeah, like you were saying, obviously there are hard parts about it, like when you're firing somebody or having to monitor your kids with a camera all night Yeah. And all these crazy things that you never thought you were gonna do. But there's so many cool things that have come out of this, like the relationships, like sometimes I think I would've never even known these [00:50:00] people.

I, it is just, it's so wild, like how influential they are to us and yeah. They always are telling me how influential we are to them. How like we, and they don't have to tell us that, but it's just how we make their lives better. Like my nurse always like, this is the best job I've ever had. I love it. Yeah. I just love this job. It's so amazing. You guys have taught me so much. Like she's, they all say the same kind of ideas. But, and it just. I don't know. It's crazy to think you wouldn't know them if this hadn't all happened, but yeah. , What are the big, unexpected, positives that you've had from having the nurses in the house?

Rhandyl: Oh man. I was thinking whenever you were talking about like how our kids know the difference and stuff, but for Remi, 'cause for a while it was up to my husband and I to determine whether a nurse was right for Remi. And then she started, having her own opinions and, it was. 

Deonna: And then she said no. That one time during an interview 

Rhandyl: Yes. Yes. With [00:51:00] her device. That was amazing. That was, yeah. And we, speaking of cameras, we got that on our living room camera and got it recorded.

Deonna: And Cole's like trying not to laugh in the background, which was the best part of the whole video. He's like, oh my gosh. I'm so sorry. 

Rhandyl: Yeah. But honestly, it's so cool to see, Remi, you can tell right off the bat whether she is feeling some sort of way about a nurse. And like a connection. Once they start training, then, she'll grab their hand or , she loves to like, grab hair and it's not in a mean way. It's like in a silly, loving way. 

Deonna: It's come towards me. 

Rhandyl: Yeah. Yes. And and just the way she'll look at them. So now I definitely pay attention to her cues and obviously mine and my husband's, but oh yeah. But it's just really neat to see. And we have such a good crew right now I think back to some of the nurses that we did have for a long time, and I'm like, okay. Like I, I don't know if Remi really was that happy, with them and it, I just didn't realize it like seeing how she is now.

Deonna: You probably couldn't [00:52:00] care at that time. Yeah. It's like you just were trying to survive.

Rhandyl: Yeah. But another funny thing, like Remi she plays all the nurses differently or she'll do things differently with each nurse.

Deonna: Yeah. That's funny to watch. 

Rhandyl: We'll, I'll have one day shift. It's mostly the day shift nurses, but because they're the ones that are, out like she's awake and Yeah. , Going to school and all the things. But she'll do something with one nurse. To give her a hard time and then she'll vent to me about it. I'm like the other one ha, another nurse didn't say anything about it. And then I'll ask them and they're like, no, she doesn't do that with me. And they're like, oh, she's just playing with, with her. And then , the other nurse will say, oh, she's been doing this. And I'm like, what a stinker. Y'all she's, yeah. So it's funny, that's why I have to tell 'em you have to keep her in line.

The love that they show for Remi is. Probably the most important. Just seeing how much they adore her and love her. And that's cool. That's what matters the most. And obviously being able to trust someone with her life. But also, knowing that she could die with me just as easily as she could [00:53:00] die with them. Yeah. Yeah, , just finding the nurses that you just know truly, deeply love your child and would do anything for them, anything. And so seeing that is amazing. I don't think that I will ever feel that way about a caregiver for my son like a teacher. No. It's different. It's different. And so that's a perspective that, we get to have that. People don't get, but like these people are, right there in the thick of it with you. And it's just been such an amazing thing to get to know these women and get to see them care for Remi and then also see how much she adores them. It's just awesome. 

Deonna: Yeah. It's like we have all these funny or bad stories, but like for every one bad story you have a thousand good moments. And it's it, once we got over the fact that people were just gonna be in our house and stuff [00:54:00] it just started to be like, okay, like I can love these people and they love Allie.

But what you were saying about Remi, starting to help you decide whether. She likes somebody or not. We used to never really ask Allie, we'd just be like, okay, this person's gonna be your nurse and we're gonna, we're gonna like them, and blah, blah, blah. And now and this has made us pass on a few nurses, but there's been times where somebody's come in and they work like one shift. And I'll be like, Allie, did you like them? And she's like, uh, I don't know. I don't think it's gonna work out. And me and Dana are like, okay. And you have to listen to your kid if they're able to somehow tell you you, because they're the ones that have to hang out with them the most. Right. 

And I remember even Allie, like she, at the beginning of this, she'd be like. This is so weird. They're out there watching me sleep and I'm like, they're not sitting there watching you sleep. They're out there doing their own thing and then you know, if you need them, they're there and they can help you. But even that was just so weird. Yeah. It's a huge [00:55:00] transition for her. I can only imagine. I've a lot of parents who, have completely not wanted night nursing for that reason. Their kid was like, that is just so weird. Yeah. Watching me sleep, I hate it.

But now we have so much fun, like our nurses are all so great at Allie and Macy's relationship on days is just so good. They have a million inside jokes I don't even know about. Like I'll be like, what's going on? And they're like, oh, nothing. I'm like, oh my gosh, you two. Or they like, they'll have some meme that they think is funny and they're just like quoting it 24 7. Sometimes they let me in on their jokes and then other times it's I don't know what y'all talking about. And it's probably about you. Yeah. Yeah.

What, so Macy, our day nurse is actually closer in age to my son than me. So it is really funny. They have the same language, the same, so funny, almost like vibe. So it does crack me up. Like I'm always like, oh, sorry, I'm old. I don't know what y'all are talking about, or whatever. But they, and I think they [00:56:00] just love us and it's such a good feeling and stuff. But before we close out, are there any we were gonna tell some of our funny stories. I, 

Rhandyl: oh gosh, I have a lot. 

Deonna: I, you probably have way more than me, but tell me one of yours.

Rhandyl: Okay. I would say the craziest story that I have was the very first time I had to call EMS to our house. 

Deonna: I know this story 

Rhandyl: was for a nurse, so this was in the beginning. And it was an older nurse, and one day , we were just in the middle of trach care and she just started. Blacking out and mm-hmm. basically passed out. And Cole was working nights at the time, and luckily it was in the day and he was home, and I ran and then woke him up. Mind you, we were in the middle of trach care, so I'm just like holding Remi's trach and then I have to get her ties back on. This lady's passed out on the couch behind me, and oh my gosh. 

And I get Remi safe and then I run and get Cole and I'm like, I don't know, adults. I don't know what's going on. [00:57:00] Get in here. And so he's all checking her blood pressure and she just like. I don't know. It was wild. We ended up calling her daughter and EMS and I , never thought that I would be calling EMS for anyone in my home other than Remi. But yeah, that was wild. Needless to say, I didn't feel comfortable having that nurse back. I think she was fine. Ultimately she was fine. 

Deonna: She, at my house, I had her too. We realized this years later and it made me laugh really hard. And when she the same nurse at my house one time ally coded , at our house and that nurse didn't respond to that, so she didn't last long, but yeah. But yeah, we had a big shelf in our room where all her meds and stuff were kept, it broke and all this wood and stuff fell on her head and we were like oh my gosh, please don't sue us or something. But we, I mean there's so many funny stories. Some I can't tell 'cause they're too terrible or something. Oh, I definitely can't tell some. 

But [00:58:00] yeah, , I've had moments where I've had to. Run out of the shower soaking wet Uhhuh with a robe haphazardly tied around me because Allie's having an emergency. And my big joke with all the nurses is I'm like, it's a miracle that you guys have not seen me naked at some point just because of the stuff that has happened. Oh yeah, me running out. Like I would care more about Ally's life than me being dressed. Oh yeah. But I'm just like, hopefully that never happens. Cause I would wanna die.

But , I've had to take a nurse to the hospital too. Dane, one time they woke up Dane and he came in there and he is Hey, you need to come in here. She's not well. And I don't know what's going on. I'm a guy I don't know what's going on. So I go in there and she was having like full on kidney stones at my house. Ooh. And , she felt so bad because I was like let me just drive you to the hospital, to the er. And she's no, my mom's coming. But she was like, in so much pain, I was like, [00:59:00] oh my gosh, I'm gonna take you right now. Like you're having a thing. And we're not, there's been so many other parents I've talked to who've had to like, take nurses. 'cause when you're just in the house so much together, like it's bound to happen at some point, but it's not funny, but but it's reality. 

It's Cole. My son Sleepwalk and he has scared the crap out of them on so many occasions. I'm at night, I'm just like, he, one time he was just like walking and then goes in my kitchen and just like staring at her. And Uhhuh, she's what are you doing? And he just stood there and I was like, oh my. So weird. Another time he went in there, which he had never slept, walked before Ally got hurt, we're like, is this some sort of trauma response?

I don't know. He hasn't done it in a long time, but he went in Allie's room and started talking to her and the nurse was like, I was like, if you wake her up, I'm gonna kill you. Like legit, I'm gonna kill you. Yeah. But he like touched her, hugged her, talked to her and then he [01:00:00] left and just went back into his room and the nurse was like, what the heck? We went back on the cameras and watched it. But no, we've had nurses like do all these funny, embarrassing things like at our house and they're like, oh yeah, I'm gonna die. I'm like, it's fine. I literally don't care. You get to the point where you're so close, it's oh yeah, oh my goodness.

Rhandyl: But yeah. We just thought that this would be such an interesting listen for those that are interested in what our life is like with nurses in our home and not really having a whole lot of privacy. It's definitely a different dynamic than your typical family scenario. It's awesome and it's hard but it's life. And so we just, really wanna thank our nurses first and foremost for all that they do for us.

Deonna: They show up for us. 

Rhandyl: Yeah. We really couldn't do this life without you guys and our girls couldn't have the quality of life and get to do and experience the things that they can without you guys. We [01:01:00] just love and appreciate all of you private duty nurses out there keeping us sane, honestly.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.