Deonna:
Hey y'all, welcome back to Raising Disabled. So before we start our episode today, we're talking about some of our fun vacation mishaps. And unfortunately, me and Rhandyl have had a few wild ones. So that's what we're talking about today. So if you're one of those people that  loves other people's drama and stuff happening to them, this is your episode, which I love those types of things.Like I'm a big reality show watcher. So yeah, if you're that kind of person, this is for you. 

But yeah, but before we get started, we're just starting to talk about our day to day life just right at the beginning for a couple minutes. And that just gives you guys outside of the disability world, like a little glimpse into what we go through on a daily basis. 

What did you guys do this last couple weeks?  

Rhandyl:
We really didn't have a whole lot planned. It was supposed to be just kind of a normal routine- work, school, all the things. But of course, that didn't go as planned. Yeah, it never does.  Remi ended up having a random fever at school last week and she was  shivering and holding her breath and  ust being crazy. And her nurse called me and was like, hey, I think we need to go.

And so we had to go to the doctor. Yeah, and just 48 hours of Tylenol, Motrin, rotation, and  fever ended up being her only symptom. She tested negative for all the things, so we had that little scare for three days, but then she's fine.  

And then she is trialing this wheelchair; it’s a manual wheelchair that you can push with your arms. She already has one but the problem was with her wheelchair, she can propel it independently when she's motivated enough, but with her and a small oxygen tank that goes on it and the ventilator, the thing is so heavy. You know, they make these little manual wheelchairs for kids really lightweight so that they don't get so fatigued, but hers is so heavy because she has to have all those things hooked to her chair.

And so we heard about this we call it her “jet pack”, but you replace the rims and wheels of a regular wheelchair that uses kinetic energy so t's like a self propelled wheelchair. So it's not a power chair. So she still has to activate the wheels manually, but when she pushes herself forward it gives her like this boost so she doesn't have to push as hard. It's it's so sounds really easy. Yeah, it's like it has all these settings and you can make it go faster or slower. 

And of course, oh, she's a little daredevil. We had turned it it was on the lowest setting and you really couldn't tell much of a difference and then I was like- Okay, she likes to get scared or go fast. And so I was like, let's just turn it up so she kind of gets the concept of it. Yeah, because you know at that point she's like what this is a new chair, what's the big deal? Yeah, like this is stupid. 

And then as soon as she we turned it up and she figured it out. She was doing wheelies in this but they have these blockers so she can't actually do a wheelie like, oh was like loving it and she just kept slamming herself into our walls and the kitchen cabinets and I was like, okay, let's go outside. It was kind of a nice day. We went outside onto the sidewalk. And she was laughing and having the best time. I'm glad she liked it. Yeah, me too, but we are only going to get to have it for a couple weeks, so she’s going to take it to school. That's where she's really motivated in her chair. And so, yeah, we're going to do that this week and next.

Deonna:
Then it just goes to insurance to see if you can get it covered?

Rhandyl:
Yeah, and then we have to do the whole process of that. But hopefully.. Yeah, hopefully it’ll work out. 

We, of course you know, we had a big snowstorm for Lubbock/West Texas, we had a big snowstorm. probably, what do you think, like, we had probably had six inches at least here?

Deonna:
Yeah, we haven't had that in a long time, I feel like. Yeah. So it was nice. Yeah. It's not that much for the northern states, but for Texas. That's a good amount. Yeah. 

Rhandyl:
And of course it all melted away today. Yeah. You have to enjoy it while it's here,  the day it happens. But yeah, Remi, I got all her gear on, her snow gear on and get her outside. She's on the porch and there's this little pile of snow. She sits there in the snow for two minutes- She's like, mmm, I'm done and.. oh my gosh literally just turns around and crawls back into the house in all of her snow gear like, huh see y'all later. And I was yeah, we laughed. But my son of course was all about it So we built a snowman and he did the whole snow angel thing and then I made some snow ice cream and we take full advantage of it. That's fun. 

Yeah, so but what about you? How have y'all been the last couple weeks? 

Deonna:
Well, yeah, we I didn't do a whole lot last week I went to Artesia, New Mexico, which is where I'm from I just went to kind of see my people and hang out and I got to see my Nana, so that was good. We got to hang out and catch up and everything and then good I got to see my nephew, which is my brother who passed away. That's his son and he's about to be. Oh, gosh, four, I guess. And so it was cool. I mean, it's, it's so good getting to see him because it's like this piece of your sibling that, you know, I mean, he looks just like him and stuff, which is like great slash heart wrenching, but we got to hang out with him.

And so that was fun and everything. I actually, I wanted to give him Valentine's and so I wanted to decorate his mailbox with all this Valentine's stuff. And so me and my mom pulled up and I thought it'd be fun to like jump out and decorate his whole mailbox and shove all these treats in there and then back up and tell them to come outside so he could come out and get it.

So of course we pull up right as the mailman is coming down the street and my mom's like, you can't mess with her mailbox while he's watching, that’s a crime. And I'm like, really? Which I guess it is. Yeah. But so we just sat there and watch his mailman deliver forever and finally got to do it. I was like, oh my gosh, my mom didn't want us to get arrested, but but yeah, it was cool. Did he like it? Oh, yeah. He thought it was funny. But we got to just hang out with people I went to church with growing up and see everybody. So, and it was kind of a nice mental break for me just to step away for 24 hours and just get to hang out with my mom and dad, so it was good. Good. 

But we had a good weekend too. We didn't really go out in the snow. Getting Allie out in the snow, it's possible, but I don't know. We haven't really tried it yet, and it's not for the reasons people might think, I would shove her through the snow if I had to, like, in the chair, but paralyzed people can't regulate their temperature at all. Right. And so she gets hypothermic like four or five times a week. Like it's not even a big deal to us, but it isn't great if she goes below like 93, 94. That's not good. And so we It's better to just avoid..Yeah, I mean. That's already a problem.

And it's wet and she's got the vent and all that stuff that can't get wet. So, it's complicated to get her out in the snow, but so my son went outside and had a huge white bowl of snow and he brought it in on the kitchen table with trash bags and they built little snow things.

Aw, fun. So they figured it out. So she got to, that's so cool. And we threw my son out there with no shirt on and shorts and so that was.. I think I saw a video. We had a good time with that. Yeah. That's so funny. Middle schoolers deserve it, probably. So, you know, he.. Oh, yeah. But, yeah, Super Bowl Sunday was fun. It was snowy and we made crepes, my kids love crepes so much. And so we made those and just watched movies and my husband had made barbecue and, like, it was just nice. Right? Just Chillin and watching the game and all the things. 

Rhandyl:
Yeah, we had a great Sunday, too. We just chilled and played in the snow and then I cooked,  breakfast for lunch, and then we ended up cooking nachos and poppers and Oh, man.That was the best. And the game was so good. 

Deonna:
Yeah, I know. At the beginning, it started out boring, and I was like, is this really what we're going to be doing? But it got better. Yeah. But yeah, my daughter loves Taylor. And so she was like, why aren't you showing her more? I'm like, well, they,  they probably have to watch how much they show her, but. Yeah. It's the big game, but, but yeah, she was disappointed with the amount of times Taylor was shown, but it was kind of funny, but yeah, we had a good time.

So it was nice. It's nice on weekends when you can just chill and not have to go do a million things. But my son had a basketball game and those are fun to watch. He scored two points and we were like freaking out, like he won the super bowl. So yeah, you know, that's how it goes with us. 

Yeah. And this week we, me and Rhandyl, launched our t shirts on our well, it's, there's a link on Instagram and on our Facebook, but we designed all these shirts and some of them are funny; there’s a something for everybody. Yeah. And so, we're excited about those. Y'all gotta go check those out. My favorite one is the one you had on. What does it say? I already forgot. I drew it the other day but..

Rhandyl:
It says, My child is nonverbal, but this mama ain't. 

Deonna:
Yeah. That is so true. And hilarious. So me. And I love it. I feel like that applies to a lot of parents.

Rhandyl:
Totally. Totally. Oh, man. Yeah. Get on! There's some really cute designs like Deonna said, something for everybody

Deonna:
And we're gonna add to it as we, if we come up with an idea, we'll add to it and we'll tell people. So that's gonna be kind of a fun way to share our podcasts and also for you guys to support us because the more we get supported, the more that we can do these things. And so, yeah, it's kind of the first step in that direction. But we hope you guys enjoy this next episode and here we go. 

Rhandyl:
Hey y'all, today we're sharing some vacation mishaps that we've experienced and some from our listeners and some from us. If you have kids you know, traveling will not go smoothly, but if you're a parent of a disabled kid and it doesn't go smooth, it can be very scary. For Deonna and I, traveling with our girls takes days of preparation, and even then, it doesn't always go great. 

Deonna:
No, it doesn't. No, we've had some fun trips so far since she's gotten hurt, but we asked our Facebook group, if you guys want to be in that, you just reach out to us, but we asked them For their mishaps, and we're going to tell you some of those first.

Rhandyl:
Yeah. A parent said that when her son had a trach, it seemed like their portable suction machine would always die the day before they needed to actually travel. Oh, gosh. I know. She said it was as fine as long as it was plugged in, but then she remembers having to stop at what felt like every outlet in the hospital to plug in the suction and it's so annoying because I You and I probably can both relate to this, but those suction machines,  We've had we had the same one for we just got our second one and she’s 7. We had to replace the battery, out of pocket, we've replaced the internal battery on the machine a couple of times.Yeah, it's supposed to be portable, but half the time this portable equipment has maybe a 30 minute charge, if even that, before it's done. Oh my gosh. It's not really..  yeah, I've, we've been there. We've had to do some of that plugging in. 

Deonna:
Well, and some kids need to be suctioned a lot. Oh yeah. Allie, I may have suctioned Allie out in public, like six, seven times ever. I mean, it's just not, yeah, like it's not something that we do a lot but then we have friends personally who are suctioning every 10 minutes and so it's just, yeah, there's a huge range. But, oh man, I feel like all the machines, you get nervous my story's gonna be about a machine on a trip and.. 

Rhandyl:
Oh yeah, mine too.

Deonna:
Yeah, gotta have backups.

Another mom said they went to the Gulf Shore of Alabama, and it was like the third day her daughter started vomiting like crazy and that just, oh, that sucks. And it scared her so much that they ended up taking her to the ER because vomiting and being inconsolable is a symptom of her shunt malfunctioning.

And so that's so frustrating when your kid has these very common symptoms that could mean either they have a stomach bug or they’re near death, there's no in between with us. But she said, this makes me laugh because, oh my gosh, this would be us. She said, after getting all the workup done and everything like that, she was told her daughter was just constipated. So basically, they gave her Miralax and they went home and we're on the beach in three hours. And I'm just like you know, this girl probably is out of state. I can't even imagine the insurance costs of taking your kid. I know. Oh my gosh. 

Rhandyl:
All for it to be constipation.  

Deonna:
Yeah. And you have to take it seriously. Like they didn't know. So yeah. They probably had a fun bill. I'm assuming. A very fun, out of network bill for that one. I know, gosh. For Miralax. 

Rhandyl:
Oh, here's another machine one. Another parent said that she forgot her son's feeding pump at home on a trip and they didn't have any other syringes. And so somehow she modified the feeding bags to go right into his g button. So I don't know how..I want to see if she did it. Me too. I'm like, wow I mean I can definitely do some redneck engineering, but I still can't figure out how she did it. But good for you, Mom. 

Deonna:
Redneck engineering. I like that. We're always fixing stuff up, especially my husband. He'll come up with the weirdest way to make something work, and I'm just like, that works. But I  Yeah, very redneck. Very redneck. That is hilarious. 

Okay, another mom said they were staying at their children's hospital’s Hospitality House. So, I mean, probably Ronald McDonald or something like that. Similar to that. The night before a surgery and she had made this huge list of all the supplies and equipment they needed and then while they were unpacking, she realized they left their oxygen concentrator at home, which that's just that machine that makes oxygen for you out of room air. And their son is on continuous oxygen through his vent. Which a lot of kids are like that, I would say, wouldn't you? I mean, yeah, like Allie's not like that and that's very shocking. And so they needed the oxygen. And so she said her husband had to drive two hours back to the house to get it and then another two hours back to the Ronald McDonald's. And I feel for this man. I mean. And guaranteed it was at night, like you just know it was at night. You know it was. Cause bad stuff never happens in the day. Well, I guess our bad story did happen during the day, but usually it happens at night.

Rhandyl:
Always, when nothing's open, yeah. So that's to kind of follow this mom story. One of our first mishaps was also due to oxygen concentrator, which we can both relate to all the lists of supplies and all the things. So I feel like for the first couple of years of traveling, every time we get somewhere and I'd realize we forgot something, I'd go in and add it to my list. And I think finally, after about two years, I got Remi's vacay list, pretty much down to an art, but you never know, like there's always something you either take off or.. it's just it's pages worth of items and from tiny little cords to big pieces of equipment, and if you forget one of them, Oh yeah, everything. Yeah, you can't just stop at your nearest Walmart. Nope. Or really anything that our kids have, so. Nothing, yeah. 

Yeah, so the first time we went on a big trip, other than going to Houston for her medical appointments we went to Red River, New Mexico. It's about seven hours from Lubbock. So we're out of state and she was two or three years old at that time. She was not very stable at that time she needed oxygen all the time; she needed the ventilator all the time. She was just not very stable. And we were nervous already about the altitude change because we were assuming she was going to need more oxygen.

And sure enough, the higher an altitude that we got on the road trip, the more oxygen she was requiring. And we had three large oxygen tanks with us. And we had used one and a half of them already on the trip and we get there. Oh shoot. Finally. Yeah, so we get there and you know how the cabins are up in the mountains. Rarely are they handicap accessible, so, you know, we have all these stairs that we're climbing. Yeah.  We literally pack everything but the kitchen sink, I swear. And so we're unloading all of that and we get it up there and finally get everything set up and it's dark, it's late, start setting everything up where she's going to be sleeping. And the concentrator, it'll turn on, but there's usually a light that turns green or whatever color to let you know it's working properly. Well, it wasn't turning on and it kept beeping at us and we're like, what is going on? What is going on?

Oh man. Of course, this is probably like a Friday night, you know, it's definitely not business hours, but I call her on call respiratory therapist with our DME company and I'm like, do you have any idea what's going on? We end up facetiming with my husband with the RT and he ends up taking the concentrator completely apart down to the bones. Everything via facetime trying to see if there was something unhooked or whatever. The RT is going through the user manual and about an hour, two hours go by of us trying to figure it out. And then she reads that, Oh, this concentrator actually doesn't work in that high of an altitude. 

So we're like, okay, we're down to less than a tank of oxygen. We just got here. We're planning to be here for four days. So she's trying to figure stuff out. We actually, luckily had some, family friends that are locals to Red River and we contacted them and crazy thing, one of their family members were on oxygen tanks. They were able to bring us over oxygen tanks.

Deonna:
Oh my gosh. Yeah, because during this entire time, she's needing oxygen. She's needing oxygen. It's not like that knee went away.  Like she's just using it up and you're watching the dial just turn all down to zero. 

Rhandyl:
Oh yeah, it was so scary. So scary. And I'm like, okay, well there's not really a hospital here that's going to be able to know what to do with her. And so, all I'm just thinking of we have to just go gather up all the oxygen tanks we can find. And we're just lucky that they were there and that they had the oxygen tanks for that time. Well then our RT actually gets ahold of another DME company in Taos, New Mexico and somehow got ahold of them this late. And my husband and my dad drive to Taos, which is like an hour from where we were, maybe a little more. Right. And. Go and pick up this concentrator that's going to work in that high altitude and get back. It's midnight by this time and…

Deonna:
Of course it is.

Rhandyl:
Our oxygen tanks are completely gone and now we have an oxygen tank refiller because at that time she needed so much oxygen that we qualified for that. But the thing is that thing won't work unless the concentrator's working. So we spent the Oh, seriously. And it'd take forever to fill a tank. So we spent the rest of our entire trip filling up oxygen tanks just to make it back home. But anyway, it was just, it was wild. 

Deonna:
So did y'all end up staying? 

Rhandyl:
We did. We stayed when we used that concentrator that we got from Taos, but we had to take it to Taos on our way home. Yeah, which is out of the way. Yeah out of the way, but we were like, whatever. We were just thankful that our trip was not ruined. Remi did not lose oxygen and  we survived it, but it was a crazy stressful first night there. Yeah, for reals. When we got home, we made sure that we have a concentrator now, from then on, we've had a concentrator that will actually handle it in high altitudes. So, yeah, but…

Deonna:
I didn't know, I mean, I knew that kids would need more oxygen, but this isn't the story I'm about to tell here in a minute, but we've been to our cabin like last summer and Allie's IPV machine was giving out at that altitude.And so it's you don't know until you try it, unfortunately, and maybe a good bit of advice is to ask your DME- Hey, what am I going to do? Yeah. That is a good thing. 

Rhandyl:
Yeah. It was like 9,000. Yeah, it is. Yeah. Yeah. It's pretty high up there, but they knew that we were traveling because it was our first big trip. We were nervous about it. And yeah, but they didn't even realize and I don't even think they give those concentrators out anymore but yeah.. It is crazy how altitude is definitely a factor especially when concentrators and respiratory stuff. 

Deonna:
When Allie's IPV machine did that, we called the company and they were like, are you in Colorado? And I said, no, I'm in New Mexico though. And we're at like 9,000-10,000 feet and she was like, yeah, we get more calls from families in Colorado, just vacationing than anything because they didn't know. And I'm like, well, it's good to know. But yeah. Was that y'all's first trip with her?

Rhandyl:
Yeah, it was, it was our first trip to the mountains, I believe. Yeah. 

Deonna:
Yeah. And Red River, there's nothing there. I mean, it's restaurants and hotels, so. Yeah. 

Rhandyl:
Oh, and it's just, yeah, and it's not commercialized at all. It's a very quaint little. No. 

Deonna:
Yeah. It's cute. I went there every summer growing up.

Rhandyl:
Yeah we grew up going there every winter skiing, and then now we try to go during the summer because it's so fun in the summer too. 

Deonna:
Do you eat at Shotgun Willie's? 

Rhandyl:
Shotgun Willie's. We love Texas Reds. 

Deonna:
We eat at all the same places. Yeah. We used to go roller skating there. It was so fun. 

Rhandyl:
Yes, so did we. We would do that when I was younger. It was the best. Yeah. Yeah. It was the hangout. It's fun. Yeah, it's great. 

Deonna:
Well, my story is in the mountains of New Mexico also, so we don't want people to think that going to New Mexico is bad. I'm from New Mexico. I'll always be a New Mexican, above all else, so I call myself a New Texican now because I technically I like that. Yeah, I know I'm raising my kids to like New Mexico equally. So yeah, that's just how it goes. 

But so my parents bought a cabin in New Mexico, a couple of hours away from their house. Theirs was like closer to Cloudcroft or Ruidoso. So people know where that is, but we used to go there all the time when Allie was not disabled, you know?

And so it was this like happy place. We go there all the time. And when she got hurt, we couldn't go there for a while just because of this types of stories. I mean, it was just so scary and everything, but a couple of years ago, we decided, you know what we're gonna go to the cabin again. We miss it. And so we did the same thing. We prepared for weeks to go and our DME company actually told us it wasn't a good idea to go, but we had prepared and our doctor said it was okay. So we were like, okay, we're going to go.  And we had all the stuff like you, I mean, that you think you need our concentrator didn't do that. So that's crazy. But but yeah, I'll give them out if they're not ready for that. Yeah. But at that time. We went out to the cabin and we had been there for a week already at that point because my son was at a camp just down the street, like a little church camp. And so we had hung out and had this really fun time the whole week.

And then my son was supposed to get out of camp and come back to the cabin and we were going to stay for like two more days. And so my son got to the cabin and Allie was still asleep. And when she woke up, her vent started just alarming and flashing red. Well, sometimes that happens and it's disconnected or, you know, just like different reasons.

And it just kept saying service needed or something like that. And so. I thought, okay, I've never seen this before. And of course, cause we're on a trip and not in a town where we can, and we had one vent now we have two vents so we can have a backup if something happens. But we had the one and that's it. And if my daughter's not on vent, she's dead. I mean, there's no grace there. You could bag her, but like you said, you only have those tanks for so long. I don't think, I mean, it was, it's like vent or nothing really with her. 

And so we had all this fun and everything, and then this thing starts going off and I'm calling her DME company like you did, and I'm just like- Hey, how did I make this stop? Because she was acting kind of fine, she wasn't acting distressed or anything. And they were like, you can't make it stop. You have to come back. And so I'm like, oh man. And so I thought, well, we kind of messed with it for a while and we're like trying to turn it off. But even us turning it off, you're having to bag her with that ambu bag. Just to even turn it off. 

Rhandyl:
How far away, though, were you guys from home? We were How far is the cabin from Lubbock? 

Deonna:
I would say it's at least five or six hours away, so. 

Rhandyl:
I mean, there's, in bagging, there's, that's not even, yeah.

Deonna:
It's not even possible. And so we were just trying to figure out what we're going to do. And my son's nervous because I mean, he knows that without the vent sister's not alive. And so my parents are just like trying to help us figure out what we're going to do. And we had actually called the paramedics and everybody that lives in this town called Weed, New Mexico, but we had called them before and said- Hey, I'm bringing a very medically fragile kid. If we call 9-1-1, you may as well just get the helicopter rolling because something's happening, you know? And so they knew we were there, but we called DME. They said, you just need to come back. And I'm thinking, okay, well, that's a six hour and they aren't willing to cross state lines for you. You, they don't care, you know what I mean? 

And so I'm like, oh my gosh, what are we going to do? So we start just grabbing everything we can. Well, you can't just go throw her in the car. You have to get everything you need in case, you know, the crap hits the fan on the drive home. So we're frantically like screaming at my parents, grab this, grab that. And I mean, my son is I mean, we were freaking out and she's over there breathing, being like, I'm okay and we're like, your vent is about to shut down. Like they told us hurry. The vent's not going to last when it's saying something like that. And so she was actually laying there fine and we're screaming and freaking out.

And so we get as much, like the bare minimum as we can. And my parents had to pack everything else up, poor parents. That was stressful, but oh, and I called 911 and I asked them if they had an extra ventilator like laying around and they were like, no. And I hang up and so I'm just like, well, that was a waste of time. And so we go put her in the car and it's very winding roads, we're five, six hours away from Lubbock, so we decide we're going to go to Artesia, my hometown, which is like an hour and a half away and just go check into the hospital there because we knew they had a vent because it was  post COVID and everything.

And so, yeah, we head down the mountain and about five minutes into the drive, I mean, my husband is like hauling booty down the, you know, and I'm like in the back and we're just holding on for dear life. And I get so motion sick, like every time I go up there, so I'm like about to, oh, I'm about to lose it. And so he takes a corner, and we forgot to strap her wheelchair into the van because we were panicking so bad. And so she tips over and you know those stories where those moms get like superhuman strength and lift their cars off their kids or whatever? I reached my hand down and by some miracle of God, I stopped her chair from slamming into the ground in the van. And her head missed the ground of the van by inches. And Dane's I will never know how you like, and he reached his arm back there too. I mean, it was like. It was so we had to get her locked in going down the road and I don't even know how fast he got down there to Artesia like it was so fast. 

And I called and we're holding the bag just ready for her vent to go out.It's smelling like smoke and when the vent was, yes, and when you're unplugging like it smelled like it was about to go out and when would unhook it, it was just spitting air, barely. And by then she's saying I don't feel good, like it was messing with her. Yeah. And so we get down there. I don't know how fast we made it, like in half the time we should have like it was crazy. Yeah. Well, We went to the hospital and I called them on the way in it was just like I'm bringing a vent trach dependent kid. Her vents going out get a vent ready let's go. 

Rhandyl:
It's not like they're this big hospital or anything. What was their reaction when you were on the phone? 

Deonna:
Well, they were like, Oh my gosh. Okay. I was like, you need to have an RT ready to go like we got to go. So Dane drops me off at the hospital and I take her in and they have a vent ready and everything. And I walked in and they were like- oh my gosh, because I mean, she looks so intimidating and we're not in a big city like Houston.

And so we walk in and I said, I just need to borrow your vent and sit here in the ER until my husband can go to Lubbock and get the vent, which is three hours away. And so they're like, Oh, good. Okay. She's not like sick or in distress. I'm like, no, she just needs to borrow a ventilator basically. Oh, but they were like, oh, thank God. They're like, they were so relieved, like legit, seriously. So I sit there with her and she's fine. And I'm just sitting there in the ER and, you know, and my parents are in the cabin still with my son trying to pack up all of our crap, but. Dane's cousin, Abby, went and got the vent from the DME company; they released it to her. And she drove it and met my husband halfway. So we sat there for three hours or something. Oh, okay. Yeah, so it was weird, but it worked out. And he came and gave us the vent and we left. And, I mean, it was just the weirdest, stupid ending to a trip.

Rhandyl:
Did you guys end up going back to the cabin, or did y'all just say, no, we're done with this trip? 

Deonna:
Well, my parents, we had been there for a week, but my parents grabbed my son and they came and met us in Artesia, like hours later I saw them and was like talking to them and stuff, and they drove back to Lubbock with us because I think me and Dane were just so traumatized by what just happened. And I think they just didn't want to leave us alone. Right. And so, yeah, we drove back, and I mean, I was so, you know, when something bad happens, you just are in shock for a while? Yeah. When we get back to the house, and I laid down on my closet floor, in the fetal position, so nauseous from the drive, like from him driving like that.

Rhandyl:
Oh, yeah, that and all your adrenaline. Oh yeah. Just dump. 

Deonna:
I was sick. Like I lay there with Pedialyte for two hours and was like, I just went through something so crazy. And yeah, afterwards people were like, are you ever going to go on a trip again with this girl? And I was like, yes. So we, I mean, we've been to the cabin again. Like you just have to, I don't know, jump back on the horse and not let it get to you.

Rhandyl:
Well thank goodness you guys have a backup ventilator now. 

Deonna:
Yeah, and that's, I mean, that's huge because without it, it's terrifying. It's terrifying. It is. Yeah. But, yeah. But yeah, that altitude is no joke. I'm pretty sure it contributed to that as well, but it is nice when you have backups of things because Oh my gosh. And I think it just overheated. But, yeah. Man, It was one of those moments where I 

Rhandyl:
It's one of those things. I mean, that's just an example of literally, one machine that is necessary. It is completely necessary for your child to live, but, you know, it's a machine. So Yep. It breaks. It's gonna break. Yeah. Yeah. 

Deonna:
So yeah, that's my wild and crazy story.

Rhandyl:
Oh my gosh. Like I have so much anxiety just after hearing you say that. I know. We've had ventilators go out on us. But we've always been at home. Yeah. One of the last vents that went out on us went out on us the night we got home from a long trip. 

Deonna:
Oh, I remember this, I think. 

Rhandyl:
Yeah. Oh my I was like, so now since Remi only really has to have it when she's sleeping, because she does not breathe when she's sleeping, but we get a backup vent whenever we travel just because, you're not going to be able to just go and, yeah, get another ventilator. I mean. No. So, like you. No. So, I'm just thankful because even our little small town that we go to a lot, where we're from, Shamrock, their hospital does not have a ventilator. They didn't even get one during the pandemic or anything. So, oh shoot. Yeah, it is. It's just scary. I mean, there's all sorts of things that we have to have for our kids.

Deonna:
Well, and shout out to Artesia for letting us borrow their vent. That's amazing. Yeah. I'm like, thank you.  

Rhandyl:
Yeah. They were like, well, we haven't had to use this in a while, probably. And yeah, it'll be in a minute. Yeah, but so yeah, I feel like all of our crazy big stories are in the mountains because my next story, we were in the mountains. We were in Colorado this time, and it was in the summer. That first trip to Red River, it was actually a winter trip. 

Deonna:
Oh, that is like a whole other element. Scary, yeah. Because there's like icy roads or, you know.  

Rhandyl:
Yeah but one of our family friends, they have a cabin, I don't even know where it's at in Colorado, to be honest, it is in the middle of nowhere; it's like a nine hours from here. 

Deonna:
Good place for stuff to go wrong.

Rhandyl:
Yes. So it's two hours from actual civilization. There's no cell phone service, Cole and I really debated on whether we wanted to make the trip, we were going with my entire family so we kind of knew where we were going, that it was very kind of off the grid. And we were like, but we're going to have all these people that know how to take care of Remi, and we took a nurse you know, as long as we have gas in our vehicles, it'll be okay. Like we can get out of there if we need to.  

But this is a small little community and maybe 30 people, there's like a handful of houses and it's this little fishing community, a little mountain village yeah. We were there for about five days and the power randomly went out on day two. And we had a small little generator. This was the first time we had rented a U Haul trailer. We had all sorts of stuff packed. Because we had to bring all of our food, there was no grocery store nearby. Everybody packed all the food we were going to eat, everything.

But yeah, we had this little tiny generator, and we had tested it out on day one and we realized that it would run her ventilator and her heater, but it wouldn't run the concentrator, the ventilator, and the heater, which all three she needed at that time for sleeping. And at that time she was still pretty not stable on this trip either. She was still needing the vent from the majority of the day. It was shortly after the summer after her airway surgery she had in Boston. Oh. Yeah. So she was still not at all where she is now, but we realized then, okay, well, we're going to have to rotate what we're running. Obviously we have to run the vent the whole time. We're going to have to rotate when she's on a tank, when she's on a concentrator, when she's getting a heater. And for those of you who don't know what a heater is, it helps keep our kids lungs and mucus moist and because it'll dry out on the vent. It's very important for long periods of time to have that.

So anyway, we're trying to plan that whole thing out If we were to lose power, well we end up losing power, something happened miles down the way. My husband and my dad had went to go try to find some people locally and ask what's the deal? Is this? We didn't know is this a big problem?  Yeah, and they acted like even though it was in the summer, they said that usually when the power goes out like that there in that little community, that it's out for at least three or four days. And so we were like, oh, great. Oh man. That was a short lived trip. We were already another trip down the drain

We were already looking into, of course we have no power. There's no wifi, there's a rotary phone. That doesn't require electricity. But the whole communities rotary phones were on these backup batteries. Well, the backup batteries were dead. So we didn't have literally even a landline either.

So we were like, well, we'll wait this out a few hours and manage and see, but we're going to have to go into, I think Pagosa Springs was like the closest place. And it was still like two hours from where we were, but we knew we were going to run out of oxygen, kind of the same scenario just with no power, but luckily it wasn't the winter, so we weren't worried about freezing to death.

But some of the locals in that little town found out our situation and It was crazy. It was like everyone. It was so awesome to see this little community come together. Like this one guy was like, oh, yeah, my buddy, he’s out of town, but he's got a generator in his shop I'll just go in there and get it, he won't care and, oh my gosh. And so they bring this in it's a big, way bigger generator than what we had brought and that thing, they started it up out there and it was just so loud, but I ran all of our equipment. We were like, okay. They went and got a whole bunch of gas for us, for the generator. And they had just had this little get together at their little fire department, and they had all this food, I guess, left over, and they brought it all over, I mean, we had plenty of food. But they found out, it was our first time there, you know, the whole situation with Remi, and that whole community, came over and brought all this stuff and it was so cool.

But we knew that, okay, we're not gonna be able to last like this for three to four days. So no, but somehow within eight hours, all the power came back on and stayed on the rest of the trip. And it was another like, Oh, is this going to be another disaster? But everybody survived.

Deonna:
Well eight hours probably felt like a long time, even though that was eight hours, it probably felt 30 hours to you guys. 

Rhandyl:
Yeah, I was like not on board for staying like even the eight hours, but I don't know. I guess everybody else was feeling adventurous. My husband was like, oh, we'll be all right. Literally the only power we were using was to run my daughter's equipment like yeah, we didn't have like we didn't have, you know, we didn't have power.

Deonna:
So nothing.  

Rhandyl:
I was like that doesn’t sound like a fun vacation honey, let's go to Pagosa and yeah, the city trip thing or something 

Deonna:
Let's go to a Hilton and we'll just move on. We used to travel with the generator and now we travel with this other thing It's like a generator, but it's called a Jackery. It's like J A C K E R Y, but it's an electric generator, so you charge it at your house or wherever you are before you leave, and then it can run, oh, I have to remember, I think it can run her vent, her heater, and her concentrator for a few hours. Oh, that's awesome. It's yeah, if we go to the cabin, we'll have the generator, but like when we go to Houston or anywhere like that, we run all kinds of stuff off that Jackery and it's so heavy. It weighs like 40 pounds, but I was going to say, I bet it is heavy. It's so heavy. I know what generators are too, but our vans are always like so loaded down.When we go anywhere because of generators and stuff like that but.. 

Rhandyl:
Yeah, I remember our first suburb and we got, we took we had all these people put all these outlets and all these extra amps and all this stuff so that we could try to run her heater and all this all of her equipment in the vehicle while we were traveling, and we spent all this money on it and it ended up not even running it. Something was the, I don't know but the amps and the watts and the blah, blah, blah, it wasn't, it wouldn't work and we kept taking it up there and trying and, and taking the equipment up there and trying to get up and then they never got it figured out so we just..

Deonna:
We went through a similar thing. We were going to have our van outfitted with this  crazy battery that they use for RVs or something. And then I think we ended up, once we got that Jackery, it was okay, we can run it off this. Yeah. 

And this is why we all have giant generators at our house for things like this. Like we have a big one, but these stories are kind of fun. Like it's funny to hear them and understand our life a little bit. And for, I don't know about Rhandyl, but for me, it's hard when somebody's complaining about how they had a three hour layover delay with their plane and how horrible that was on their trip because I'm like, you have no idea. We have had things happen on our trip where it was a life or death situation. And so, yeah, definitely, if you are not a member of the disabled community, it's not good to complain to us about stuff like that because we just don't want to hear it.

Rhandyl:
Yeah, it's really hard to relate to, and I totally get you laying in the fetal position, there's been so many times, not just vacations, but just like these moments that happen that it took everything you had to get through because your kid's life is on the line and yeah, just that dump, that feeling of like you literally can physically not do anything like you’re completely spent. You can't mentally or physically do anything else except just lay there and be thankful that like yeah, it's over.

Deonna:
Yeah, that it worked out that one time. Yeah, Dane is convinced that I laid there like that because I didn't want to help unload all of the stuff, which I'm not going to lie, I didn't want to help unload all this stuff, but I, yeah, I physically could not even move because of how horribly stressful that had been. 

Rhandyl:
Yeah and I feel you on the motion sickness. I get so motion sickness, and so mountain trips always get me like. Yeah. So bad. 

Deonna:
They're terrible. Especially those. I love the mountains. I know. I mean, they're, it's fun to go there. And we've been back to the cabin. And like I said, the second time we went back, her valera gave us trouble, her IPV. But it wasn't as big of a thing. It was oh, crud, you know, but it wasn't like, Oh my gosh, we have to go home right now. But yeah, it's always something.

And, you know, we hope, these stories made you kind of laugh and be like, Oh my gosh, their lives are crazy. But we share these stories because we want people to be able to relate who have been through similar stories. And then we also want people outside of our world to know how hard it is for us to go on a trip, and what we're putting on the line when we go outside of our home, you know.

Rhandyl:
Outside of the normal day to day. It is scary.  

Deonna:
I've said this and this is like one of my mantras, but I've always been like there's no point in keeping our kids alive if you're not gonna live And yeah, it's really a difficult thing because every time you go outside of that comfort zone, you, there's a little risk there. I mean, you know it, like it's, it is the way it is. But if you want to have any sort of, I don't know, like experience, yeah it's worth risking it a little bit, but yeah these stories are fun, but yeah.. 

Rhandyl:
And you learn a little every time once your kid almost dies a few times and you know. Oh, the next time we're going to do this a little differently, you know, it's kind of the way it goes. 

Deonna:
t's funny, but it's not. 

Rhandyl:
You just add that back up ventilator to your supply list. 

Deonna:
Exactly. Well, and next time, we're super excited, because next time we're talking to somebody who has been all over, been in remote places, all these national parks and things like that, and she's going to tell us how they do it. The equipment that they use and things like that. So we just wanted to share some of our silly, funny, not so funny stories, you know.

Rhandyl:
Yeah, and this family, they live in the mountains and so they have lots of experience with mountain travel and all these awesome adventures. Yeah. We hope that you guys enjoy the next episode.

**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.