Deonna:

Hey y'all, welcome to Raising Disabled. This week, we're going to learn all about Rhandyl's routine with her daughter, Remi. We're going to learn everything she does from the moment they wake up until the next morning when they wake up, because the work never stops, really. It's not like when they go to bed because there's stuff to do, right? In the middle of the night. 

And so if. You guys want to learn about my routine with Allie, who's a quadriplegic. You can listen to our last episode, which is episode 14, but we're gonna just learn all about Rhandyl's routine today. And so Rhandyl, I'm just going to let you get going with it. 

Rhandyl:

Yeah. So for those that have been listening to Raising Disabled for a little while know that we've, we've had lots of routine for the last seven years. And it seems like Remi's routine or our routine changes year to year, depending on how she's doing and what activities and things that she's in. So just kind of a comparison, from when we first brought her home from the hospital  compared to now, I would say the biggest thing is she's a lot less fragile.

And so in the beginning, there were a lot more med passes. She was on lots more tube feedings just all, all day was medical, medical, medical, and now, now it's kind of switched to where she's more active, and so she's going places, she's doing things so we still have the meds and treatments, but they're a lot more few and far between than they were like, say,  five or six years ago. Or even, you know, four years ago. 

So so for those of you that are listening and you're just in the beginning phases of this process  we get it, I mean, if you listen to the last episode Allie goes to school and Remi goes to school so, it's doable and it can happen. So Remi has nurses that, in the perfect world, they're here all day and all night taking care of us. Yeah, but taking care of us, literally us, yeah. Taking care of Remi, that's their job, but, you know, I mean, if it weren't for them yeah. So, whenever I refer to we, as I'm talking about our routine, I'm referring to me, my husband, the nurses, really just what we call our tribe or our village. So if our nurses aren't here, I'm doing this or my husband's doing it, we're doing it together.

So I'm gonna kind of start her routine things that happen in her her morning routine, we have to prepare for right before say we are going to bed. So I always make sure before everybody in the house goes to bed that all of her equipment is plugged in and charging. Because to go and to be portable and go places, she has to take a lot of equipment with her so that everything has batteries and has to be charged.

So yeah, we have, we have a. portable suction machine as well as a stationary one. But the portable suction machine, we make sure that's been charging all night. Of course, her pulse machine which measures her oxygen saturations and her heart rate just like Allie's. And then of course her ventilator; there's backup batteries in the ventilator, but they have to be charged. So we make sure that the vent is plugged in all night. 

And then we also have oxygen tank, at least one that goes to school with her.And she doesn't typically have to use oxygen right now. But when she does, she tends to need higher liters. So we always try to make sure that her oxygen tanks are full. And we actually have, yeah, we actually back in the day, because Remi came home on very high oxygen levels. And so we have two forms of oxygen, which I think you, you guys do as well. So you have oxygen concentrator. Yeah.. Well, then, of course, you have what most people are familiar with are the oxygen tanks themselves. Yeah. And so we have those as well, but we also have an oxygen tank refiller. Because she would go through so many oxygen tanks that we were able to justify getting our own oxygen tank refiller. That way we didn't have to switch out..

Deonna:

Because otherwise your going to have to get deliveries all the time. 

Rhandyl:

Correct. Yeah, and so it wouldn't have been safe for us to travel without this refiller things like that. So we've we're very fortunate. We do We used to always always take it with us because when she was on oxygen 24/7. Now, yeah, we don't always travel with it unless she's showing signs of Illness, but even now we're able to manage her illnesses with just the ventilator most of the time, thankfully, and her breathing treatments and such but we do have it and so anytime a tank gets low or even halfway low then we stick it on the oxygen tank refiller, but it takes hours. It takes like over a 12 hour shift to fill up a completely empty tank. We have been very fortunate to have it when we've had some trouble traveling, which, you know, is a whole... Yeah. We could do a whole episode on our blooper travel stories. 

Deonna:

Yeah, that's a story for another day. People don't realize too that these concentrators or I don't know about y'alls, but our concentrator is huge. Oh, yeah. It’s larger than like a big rolling suitcase. It's very big It's very heavy, which we don't take ours out and about but that that thing is huge Yes, but the tanks are huge, too Yeah, our tanks are huge. 

Rhandyl:

Yeah, we have big tanks. And we have a couple of small tanks that we requested. That's actually, we take the smaller tanks to school because they, we have a little compartment under her wheelchair. Right. That fits right into, and the smaller tanks, we used to take the big tanks. Yeah, they're still big and they're still heavy. So the Concentrator we have is probably just like yours. It's really heavy in them, but the refiller itself is even bigger than them. It's just everything, all of, so all of this equipment just takes up so much space.

Yeah, yes, for sure. In our previous home, Remi actually, when she came home, she took over the master bedroom. Oh, no way. For years, until we just moved a little over a year ago to a bigger home, but. Y'all got the big room now, finally. Yeah, we had to, like, put our king size mattress and storage for years. I guess it was like five or six years. And then, yeah, we finally got to bust the kingsize mattress out when we moved. It was awesome, but she took over the master. That's funny. And yeah, I know she was still tight in there, even with all of her equipment and her bed. I mean, it's just bed and you gotta have, so much stuff.

Yeah. So that's kind of, we just make sure everything is full and, and fully charged, fully filled all the day. Yeah. 

Deonna:

It's not like your cell phone. You can't forget to charge it and not care. If you forget to charge some of this stuff, it's life or death. I mean, it's very serious. 

Rhandyl:

Yeah. So but yeah, so that's kind of what we do before night before we all go to bed and then I usually, I'm up around 5:30 because all of her, things we'd start about 6:00.

Deonna:

Well you get ready and get cute every day and like put on makeup. I don't do that. So. Yeah. I look terrible.

Rhandyl:

Oh, whatever. But I, I get ready for work and then first thing I do is prepare her food for the day. She eats by mouth and all of her nutrition when she's healthy, she eats by mouth, but she has sensory issues. She will not eat anything she has to chew. So all of her food has to be fork mashed. And so there's a lot of preparation when it comes to what she's eating. Yeah, so I get that all prepared, like for example for breakfast she eats banana and mashed like mixed berries and yogurt and then at school the nurses have.. We keep a whole stockpile..(I’m pretty sure the teachers are probably annoyed) She probably has a whole pantry full of things, but she has this we add the cereal to her food to thicken that right, and then we always just keeps like seasonings at school because ..

I don't think we've mentioned this but, people that have trachs their smell and their taste buds  they're lessened because Yeah. So they don't taste as well as we do. So, we add a lot of seasonings to her food to help her enjoy it because she’s limited.

Deonna:

That's so crazy that you say that, because, the other day, Allie told us that she couldn't smell anymore, and I thought, what? But she never complains about bad smells or says, like, when she smells something good, so I didn't know that.

Rhandyl:

Yeah because you're bypassing that nose, and so, cause, I want to say, the large percentage of our taste is from our smell, and most people that have had COVID know how weird it is to lose your taste and smell. So we try to season up her food. So we have seasonings at school and then I'll make chicken salads so she eats pretty healthy. There's lots of avocado and mashed up boiled eggs and all sorts of, so, she eats healthy, yeah. Yeah, luckily we were able to get good calories in her with the type of texture that she prefers. 

Deonna:

My daughter's like, can I have Dr. Pepper and marshmallows? 

Rhandyl:

And you're like, sure. There's some times where we're eating something so good like a chips and salsa or something or a cookie and we're like, Remi if you would bite this and chew this, I would give you the whole box, you know, but nope. Yeah. She does enjoy her some mashed up cake and ice cream though. You know, oh good. She gets that. Yeah. She gets, she gets some junk food every once in a while. Yeah.  

So we fix all of her food in the morning, get it all prepared and get it in cooler bags cause a lot of it has to stay cold. She eats a lot of cottage cheese for snack time at school cause she's not gonna eat the typical goldfish and stuff. So, so she gets her own little snack for snack time and then I send a lunch and the nurses feed her. And she will feed herself intermittently with a spoon. Well at school it's hard because they give these poor kids like 15 minutes to eat. But if we let her feed herself the entire meal, it would take an hour per meal to do so. Oh, yeah for sure yeah, so it's just not not always doable. 

Yeah so after the food in the morning, we, I make sure that we have all of her water, so we give her bolus fluid. And so instead of having a pump running because she's in and out of her wheelchair and she's, she's mobile, like she'll crawl around the classroom or be doing things in PE and things. And so she's in swings and so it's just safer and her stomach allows us to bolus fluids intermittently throughout the day, so she's not hooked up to the pump. So we're not accidentally pulling out her g-tube all the time. 

Deonna:

And that just means like, that just means just dropping it in like all kind of at once?

Rhandyl:

Yeah, so we have a big syringe  so she gets a thousand mils of water in a 24 hour period. And we break that up into like 100 and 200 mils all throughout the day. 

Deonna:

Oh, so y'all are doing this all day, just a little there. 

Rhandyl:

Yes. Yeah. We have it all timed out. So it's, it's kind of like meds. Her water boluses are timed. 

Deonna:

It's kind of nice though, cause she's not connected to the g-tube. Right. We can do that with Allie, but if Allie was moving, yeah, that'd be a lot harder. 

Rhandyl:

Yeah, and for a long time we were not so fortunate and we were, I mean, what we call milking the bed when she was on tube feeds all the time and little piece would come undone and you'd walk in five minutes later and the whole bed was soaked with formula. I mean, that's. That's the whole thing. I mean. That was so frustrating. Yeah. Yeah. So.. 

Deonna:

We would do that just because we messed up, but yeah.

Rhandyl:

Totally. Oh, 100%. I mean, you leave one little port open and yeah. Yeah. But we don't have to deal with that as much anymore. We did for a long time but now her stomach tolerates bigger boluses and so they're measured out. So we know these times when she's at school she's she's got to have this much water, and we mix in vitamins and all this other stuff in her water. And so that's all my gosh that we we do that and then we also check and make sure there's plenty of saline in her suction bag for flushing the suction and so.. 

Deonna:

We shoot saline into our kids lungs basically every once in a while so that that mucus can  break up and you can get it out and if you don't have it, it could be bad news.

Rhandyl:

We keep a lot of saline as well to once we do suction out, if it's really thick we always flush the catheter after every time we suction so yeah, where the they'll last a little longer that way.

So you have these check check checks every morning so when she eats, she's not on the ventilator. She's on  a speaking valve. She's so she's off event. And so you got to make sure that that's packed because she goes to school on the vent and she doesn't come off of it until breakfast. And then she, some. Yeah, and so then she'll, if she's doing well, like at baseline, she'll stay off the vent for like an hour and a half, two hours, and then go back on the vent and give her a break, and then for lunch she comes off. \

Deonna:

Does she like if you're in the car, does she have to be on the vent in the car no matter what? 

Rhandyl:

No, it's just depending on how long she's been sprinting (which means off the vent.) Right, it's situational. So, it's situational, it just depends on, you know, she can tolerate being off of the ventilators, what we call sprinting, for usually like three hours, and then you can tell she starts getting fatigued. Oh, yeah. Yeah, and so then we put her on her daytime ventilator setting, it just gives her just a little bit of support.

So, then I pick out her clothes and we at least have three sets of spare clothes in her bag at all times. And a pair of spare socks because we've not had them and she's came home barefooted because we have poop or pee all over our socks and mom didn't pack a pair of socks.

Yeah, so that's the thing about kind of her size right now. She's lalmost too big for  the larger size regular diapers, but she's also too small for  the small size youth diapers. So we're kind of in this weird size where we have lots and lots of leaks. We just recently started using these liners for her diapers, and they help some, so we're not going through as many outfits. But unfortunately, we're just in this weird transition where  we're going through lots of clothes. So anyway. 

Deonna:

I wish there that were these amazing diapers out there that were for this weird in between phase because there's just not and it's so frustrating. There's so many kids out there who need that and it's just not a thing that is made. So yeah, it's frustrating.

Rhandyl:

I know.  So that's all  making sure we have everything ready to go. Just daily stuff and then at six we start IPV, which Deonna explained in Allie's routine last episode. But it stands for intrapulmonary percussive ventilation. Yeah, IPV. It's basically internal. I just say, yeah. Exactly. I, like I, like I explained it as like internal CPT, which is, yeah, it's like a vest type. Yeah, so it helps break up all the yucky junk out of their lungs by pumping air in there. And anyway, so that lasts about 20 minutes. And we typically just use normal saline with that. We have a med that will help open her up If she's wheezing or something. Y'all don't use albuterol? No, we don't. Something different. Because albuterol It actually worsens the malacia, so like if you have a floppy airway, it makes it more floppy. So, it's called Atrovent it's a bronchodilator as well. But it's not as common, but yeah, that's the one we use if she's wheezing or if she's real tight. But it, the only downside is that it can actually dry her out even more so we're careful when we use it and when we don't , you know We make sure it every day.

No for sure. We don't but so we do that first and then her meds and she's on way less meds than she was years ago, thankfully. Mm hmm. She's still, I mean, she's still on a lot of meds. A lot of them actually are over the counter. Just things that we give her, like probiotics and vitamins and… things that you get to pay for. Oh, yeah. Yeah, most of her meds are actually not even covered. I mean, we have a lot of them that are, but a lot of them aren't, so. Yeah. Ours mostly are. Yeah, because we keep her on like Zicam and Elderberry, things like that just to like boost her immune system.Immunity. Yeah. Yeah.

So, then we brush her teeth which is, it used to be a battle but we now have, I mean it still sometimes is a battle, kind of like Allie. But we I know, what is it with that? I don't know. We got these, like I don't know, I call them a block, but they're, they're awesome. The dentist gave them, they're these like kind of squishy, it's like foam over a tongue depressor. So you can like put it in her mouth. She would bite down on the toothbrush so hard and l we couldn't get it out, you know? Or like, Oh, I can imagine. So we have this thing that we can turn and then it like helps keep her mouth open, but it's not hard so she's biting on it and I'm like girl, you chew these things so hard and you won't chew your food. I don't get it. But anyway.. You know she could. We can brush her teeth a lot better now. Yeah 

And then, of course diaper changes, and then we, oh something I didn't mention with the incontinence is we have these, we call them chuck pads, they're just disposable pads that we have. They're like puppy pads. So, they are, they're like bigger, a little bit more absorbent puppy pads. Yeah. Yeah and. We never go anywhere without them. They're in her car seat. They're in her wheelchair. They're in her everywhere. We have every room Yeah Oh, speaking of that, we, we actually weigh her fluids in and out. We actually document those we have a notebook the nurses document them in their charting, of course. But we actually keep a journal. Every single day for her entire life, we have journaled how much fluid we have put in her body and how much fluid has been measured outside of her body. We we write the time and the description that way, she's not near as fluid sensitive as she used to be but she used to be really fluid sensitive and she was on high doses of Lasix and all sorts of stuff. And so she's not near that sensitive anymore. Right. But if she, sometimes she'll present with pneumonia or some sort of a respiratory problem and yeah, it's actually not even an illness. It'll be like she's fluid overloaded. And so we've learned those have saved us in the past going back and, subtracting and adding to see, okay, well, she's had way too much in and she hasn't given us much out. So, you know we need to do something about it. Like all that fluid's going somewhere and it’s typically her lungs. So so we still do that. The nurses take the journal to school and they chart all of that as well. 

And then of course we get her dressed and then her hair. Her hairs not been an issue up until recently. She was, she's always been great at getting her hair done, but no, she's started fighting me really bad to the point to where I have to like get in her bed with her and put her between my legs and hold her arms with my knees. And she's flailing her head around, screaming, fighting me, and , we'll turn the movie on and everything. But then some mornings she's like, okay, it just depends on the mood, if she woke up on the wrong side of the bed or not. She's just getting more of an opinion about everything. And so, oh my gosh. So anyway. 

Deonna:

I'm just picturing this, you being like, you will be cute today. You will be cute today. 

Rhandyl:

You know, you know, well, I'm like. She hates her hair in her face. Hates it. Yeah. Like, will pull her hair out versus, I mean, she, she will literally yank her hair out if it's in her face. And I'm like, okay, Remi, so these are our options- your hair's going to be in your face or I'm going to have to pull it up. I mean, and I'm not doing anything, like, there's no French braiding going on at 6 a. m. Yeah, like ponytail. And I'm just trying to get your hair up in a messy bun. Gosh. Oh my gosh. Yeah. So that's been our new battle for the morning. That's funny.  

And then she wears AFOs Right. Just little braces on her ankles and then put her shoes on and then she rides the bus to school with her nurse. We just started that last year and it's actually been great. She loves riding on the school bus. We have a dirt road that it comes from the school to our house on the way back, the bus driver takes the dirt road, and she absolutely loves whenever the bus is on the dirt road because it's bumpy and squeaky and she just like it has her hands up like she's on a roller coaster.

But anyway, she gets on the bus. I need a video of all of this. Oh, I have some, I'll definitely show you. And pictures, yeah. It’s so hilarious. Okay. Oh my gosh. Yeah, she loves it. That was really hard for me  I was like, scary. Oh, she'll never ride the school bus, but she does and the school is literally a half a mile less than that if as the crow flies, so that yeah, it's close gives me. Yeah, it's yeah So and her nurses are with her. She would never go to school without them. Oh, no. Yeah, and it's nice I have to get my two year old to his in home daycare and then work. so , it's picking her up and dropping her off is, I mean, it's a lot to load up in a vehicle.

Yeah. So you guys have an awesome van where you can just roll Allie in and strap her down. Yeah. And we don't have that. We may eventually. Yeah. But Remi rides in a car seat, so then we have to load her wheelchair up in the back of the car, and all of the bags come off, and they're all in their separate places, and it's, so it's a process, and so, it's like, a solid hour,  taking her, dropping her off, and same thing in the afternoon. And so it's really convenient. Oh yeah. I believe it. Um, For the  bus to come and get her. And sometimes she's the only one on the bus. She's got her own little route. It's like a VIP. That's hilarious. But yeah,  but the bus gets to our house. 

Deonna:

Makes me happy. She rides the bus though, one of my goals for Ally is for her to get to ride the bus. They go on a field trip this year, but I mean, it makes, cause our kids are in the same school district. So I'm like, okay, this is possible. 

Rhandyl:

Yeah, it's possible. But they get here a little after 7a.m. So it's an early morning. So we're like tail. Yeah. So it's like rush, rush, rush from 6 to 7. I mean, and the nurses shift change at 7. The nurses are giving report and we're trying to  get everything unplugged and everything out the door as the bus is getting there. So it's kind of a hectic every morning, but we've kind of got it down. Yeah science but yeah.

Yeah, so we have all the bags that go with her to school, which of course there's the suction machine that we talked about. And then there's an emergency bag, which has her trach, backup trach, all of the emergency type things in there. And then we have what we call a go bag and it's a little overkill (some people would say), but literally it's a duffel bag that has  pretty much everything that Remi has on her person and for a machine that's with her a backup piece of that or a backup ventilator circuit or any like trach pads. I mean you name it. Yeah. Yeah, you name it, it's in that bag and it goes everywhere we go, but it has wheels and it  rolls. 

And then, of course, the Ambu bag is always right there. Yeah. Especially with Remi. And then of course the oxygen tank. Yeah. Yeah. Homegirl likes to turn blue and need that quite often.

So Allie, like you said last episode, she's in general education, but Remi's in special education Our district calls it life skills, but she's in a class with first graders. They're all special education. But they have the busiest routine. It's crazy. So she, of course, she eats breakfast and then  she has inclusion every day, which means she goes to the general education classroom. I think it's about 30 minutes, and then they go to this motor room every day. And it's awesome. It's like one of her favorite times of the day. It has this huge bean bag and this huge swings and all these cool sensory things. 

And so yeah, and then adaptive PE is every day, which is part of special education and they have an adaptive PE teacher, which she has a crush on and loves him so much. And so she gets to do all her favorite things and they're spinning and he makes her work every once in a while.  She goes to specials, which is like music, computer. Yeah. And then they usually go outside if the weather's nice. And so there's a swing out there that she can get in that she loves. And then sometimes her nurses will run her around the playground and they'll race with other kids. And it's so funny. Remi loves them to like sprint her in her wheelchair. That's so cute. Yeah. So it's fun. 

But, so they're busy, busy, busy all day. She eats breakfast, lunch, snack at school. Yeah. And then they're giving her those waters, those boluses throughout the day. Right. And so, and then of course suctioning her just whatever she needs. That's getting done at school, and the nurses will keep me updated with things throughout the day. Of course there's days where, oh, I forgot to put, I mean, crazy girl, she's not as bad as she used to be, but , if her food is not in a specific bowl or there's not a specific utensil that she likes sometimes she'll just refuse to eat. And so I will have to run home and grab her. Special bowl in her special spoon and take it up to the school. Oh my gosh. I mean, and of course I'll forget to put her actual food, you know, and I'm like, oh my gosh. So that's a whole thing. But it's not like she's gonna eat anything from the cafeteria. I can’t order her delivery right to the school. But yeah. 

So she she gets back home from school around 3:15. They unload her and most every weekday she has home health therapists that come, occupational therapy, physical therapy and they're an hour/sometimes longer and they start about 3:30/3:45 so shortly after she gets home.

And then it's time for a bath and so we do every other day, we do a full bath which we have a bath chair, just like Allie's we've had it forever last winter we were on vacation and The way we always did her bath whenever we traveled is I would get in the bathtub with her so I'd make sure that she wouldn't  fall over, get water in her trach, yeah. Yeah. Well. My sister is an occupational therapist and she was there and her and my mom, I was, we were actually on a ski trip and I was skiing and they were going to do bath and my sister was like,  she can sit up. I think she'll be fine. Just, let's just. We don't have to get in there with her, she'll be okay, you know, and I, of course, I'm not there to say no, that's not safe. 

Well, anyway, she did fine. And so, we get home and I was like, okay, well, I gotta, let me see how, if she's really okay. Yeah. And so, I do it and she's fine. She's fine and she's loving it like playing splashing in the water. Which I mean she had done it in like little  shallow pools in the summer, but we're right there and I don't know I just she was always fine in the bath chair. Well, the next day I put her in the bath chair because it was just like, it's our normal, the bath chair was in the bathroom. Yeah, that's what you do. It was in the tub. Put her in the bath chair. She flips out. Mad. Oh, no. And I'm like, we couldn't, and I, at first I was like, what, like, what is wrong?  And the nurse was like, I bet it's the bath chair. And I'm like, no way. Sure enough, I take the bath chair off. Oh, no. Set her in the tub. And she's like happy as can be. I'm like, oh, okay. ,  it's uh, not as easy to bathe her this way, but huh. She's, she's just Has her opinions. So I'm like, okay. I mean, it's, it is safe. Probably more fun. We use like a handheld…Yeah. And so, and maybe she doesn't get as cold. I don't know, but, yeah. 

Deonna:

They do get cold when they're up above the water like that. It's just kind of weird. 

Rhandyl:

Yeah. Yeah. So anyway, that's every other day we wash her hair and do that. And then we call it wipey bath is, what we call on her off days, we, we just, we have these  bath wipes that we use to, wipe her down and then  we'll do trach care right after bath and we do that on her bed. And it's this whole thing, you know, we have, she's pretty good. She doesn't fight us with it. We use this phone holder that we connect to her bed and and turn on a movie and she'll watch it while we do trach care and we'll just kind of wrap a blanket around her to kind of  swaddle her in. And then we just clean her trach and it's a two person job, like we said on the last episode, it's definitely a two person job. Someone's holding the trach and the other person is cleaning it cleaning behind her neck, all the things putting whatever you need. Like everybody's different, but you know, your routine, however you do trach do that differently. Yeah. It doesn't matter  who taught you or what. Yeah. Everybody does it differently and whatever works is. For you is what works. 

Deonna:

What shows does she like, like to watch while you're doing it? Oh like what's her, her shows?

Rhandyl:

Well, so she has a communication device that we use and we have all of her favorite movies on there for her to choose from. So anytime she has an option.  Like, during trach care, during stander time.  She'll pick a movie off of her device. And, it depends. She used to go through where she wanted to watch one show over and over and over and over and over again for months and it's always Disney probably because we just use Disney Plus a lot. But yeah, Disney movies, she loves all the princess movies. But like right now she's a good one in between like Beauty and the Beast, Encanto, Lilo and Stitch Lilo and Stitch is so funny. It is. It's so funny. So underrated. Um, Toy Story was a big one up until recently. Tangled is always a big hit. Little Mermaid she loves. Yeah. So she has all these options and that's the first thing she goes to all her communication devices. She goes and she uses her finger and goes into her movies and we'll pick out which one and she's, you can watch her. She's looking at them all. And then she'll finally hit one. And then if she accidentally hits one with her finger, she'll  go back and be like, no. And then she'll go back and choose the right one. Yeah. So we let her choose most of the time. We let her choose what she's going to watch. And so, she gets to watch a show during trach care, and then it's dinner time and then she eats dinner, and then it's like, 30 minutes to..

Deonna:

Do y’all sit at the table, or do y’all? We're terrible about that. 

Rhandyl:

No girl. So she eats dinner at like 5:30 or 6:00. Half the time. I'm not home yet. Cole's definitely half the time, not home or going back to work. If I'm cooking, I'm cooking like after 7pm because that's when all the things are done. So unfortunately in our family dynamic, us all sitting down together at the family table, is probably never going to happen. Just going to say it. Not going to happen. It's not. I feel like that's the truth. Our work schedules don't work. A lot of us. Yeah. Our routine, like our kids routines. It's just yeah.

Deonna:

I can’t take these people who are like, oh you have to sit around the table. This is like the only way to be. I'm like, most parents of disabled kids, that's just not our reality. We can't do it. , we talk and hang out all the time, but just not in that moment. Like, eating is such a different thing for us too. 

Rhandyl:

So yeah. No, we do not all sit together and, but we're all like, I'll be in the kitchen. I'm glad I'm not the only one. And yeah, no, I'll be, you know, we'll all be in the same room, but we're not all eating. You know what I mean? So, yeah. Yeah, so then she usually always after dinner, she gets to pick, because she only has like this 30/45 minute window after dinner before shift change and then all of the night stuff starts.

So she gets this little small window of  free time at home and we always let her pick a movie and half the time she watches the movie that she chooses and then half the time she just crawls around the living room and the kitchen. 

And then she changes at seven and then by 7:30, she's in bed and we're starting her night routine, which is very similar to her morning routine. We do the same IPV, meds, water. She usually always falls asleep during IPV. So she's usually asleep by like 8:15. For whatever reason, she just sleeps through it. It like kind of lulls her to sleep  on a perfect night, she's awake like after 5 a. m. She rarely will sleep past 6. Now there's some mornings where she actually has slept all night and is still asleep by the time morning routine needs to start, but that's rare.

We still have a lot of nights where she'll wake up in the middle of the night and be up for hours, sometimes not go back to sleep. It's not as bad as it used to be we've started her on different meds to help her sleep. I don't know what it is, but I feel like, this is a common problem, no matter what your kid's diagnosis is, it seems like, just kids with disabilities or at least from  things I've see, It’s like yeah, sleeping is the hardest thing. I know that you guys have trouble with Allie and her sleeping

Deonna:

Yea, it can be really hard. So what's that look like for y'all when you don't have a night nurse, like what do y'all do at night?

Rhandyl:

So at night once she's asleep and once all of her treatments and meds and everything, we, she has a lot of different settings on her ventilator but the primary settings we use are the nighttime and daytime settings. So we always switch her to nighttime when she's asleep because, I've mentioned in the past she has central sleep apnea. So she literally, when she falls asleep, does not trigger breathing. Yeah. So we just have this setting that, Allie doesn't either. Yeah. So she just has this setting that we put her on at night and then we have to refill her humidifier that we use in her, we talked about this last episode, but kids with trachs have to have humidifier hooked up to their ventilator for the majority of the time but like as when they're active, we put this little thing in called an HME that helps act as a humidifier, but it's not great for long periods of time. So you have to add distilled water into this humidifier and ours, we have to refill it probably every three hours, I would say. And so If we didn't have a nurse, we used to like, whoever was going to be up with her, you didn't fall asleep. But she's to the point now and I wake up to alarms, and if I hear her roll over, like her ventilator will sound different and I'll wake up. So I'm a really light sleeper now, so like if I'm in there, I sleep in her room. Yeah. I try to sleep in her room and then the heater will go off if it needs to be filled or I set an alarm on my phone or 

Deonna:

I've heard that sound in my dreams like 50 million times. Yeah. It's so annoying. And sometimes it goes off when absolutely nothing's wrong and it gives you a heart attack.

Rhandyl:

Yeah, so we refill that and then really it's just I mean, she's monitored her, her oxygen saturations, her heart rate, all that is monitored all night. Everything has alarms on it. If she comes disconnected, the vent goes off. If she's breathing too fast, the vent goes off. So luckily,  everything we have will kind of alert us.

So the main thing really, I mean, as long as she's sleeping is really just refilling her humidifier. She doesn't get meds through the night or water through the night. We have that adjusted to where we're not interrupting her in her sleep. Of course,, now, on the nights that she wakes up, typically though, when she wakes up in the middle of the night, I don't know what it is, but, she is wild.  All over the bed we're having to chase her around with the vent tubing, because she's disconnecting herself, she’s throwing things out of the bed so if she's not sleeping, you're not getting any, it's like, yeah, and we try to, like, put a weighted blanket on her, and we'll even do IPV in the middle of the night.

Kind of our protocol is like, okay, if she wakes up, cover every light off, we have all these towels that we like cover the little light to the concentrator and we cover the light to this and that. It's so turn off your little, turn off your little nightlight nurse, like turn that off. And then, shut every door,  get it as dark as you can put the weighted blanket on her, tell her it's still nighttime, and , I'd say probably less than 50 percent of the time that'll work and she'll go back to sleep yeah It's really just a gamble When she wakes up in the night if she's actually gonna go back to sleep or not and then it makes for a really long day obviously for her but for everyone else because she is delusional and cranky and tired but yeah so..

Deonna:

And kids just cannot, even Allie who's  cognitively exactly the same as before her injury, except for  the crippling anxiety that she's going through. You'll try to even reason with her and be like, Hey, it's one in the morning, go back to sleep. But they just, it's hard for them to do that. Like, it's just, they go through so much difficulty. All day, all night, and, it's so hard to explain to them. If you don't go back to sleep, you're gonna have a horrible day the next day. She just doesn't care. No, I feel like, fine, let's have a horrible day. I don't care. I'm like, oh my gosh. 

Rhandyl:

Mm hmm. Yeah. Like I said though it's a lot better. For a while it was like, if she got a full night's rest, it was a miracle. So that's kind of a day, that's a typical, active school day. Perfect day. Yeah. Now on the weekends, it's a little more chill, we try to keep her on the same schedule though. Like, if she, if she sleeps in, we'll let her sleep in usually the latest we'll let her sleep in, if she's been asleep all night, is like 7:30 or 8:00. 

So Saturdays are usually, if we're home on the weekend, Saturdays are usually pretty chill and then Sundays we'll go to church and that's basically, like a school morning, because we go to an earlier service. Yeah, but still, our weekends are way more chill and, but the treatments and everything, the meals, all that is still the same. It's just not as rushed as on a school day/work day/weekday. 

So we call Sundays “change day.”  We change her trach on Sundays. We change her ventilator circuit on Sundays. Everything, everything that has a filter. Yeah, everything that has a filter, the filter gets It's swapped out and cleaned her suction catheters we changed on Wednesdays and Sundays. We soak all this stuff in this disinfectant solution that we soak it all in. And then there's a whole process and you sterilize the trachs and, yeah, all that we do on Sundays and..

Deonna:

For us, now our night nurse does it, our day nurse did it forever, but now our night nurse does our change out and it's just the same thing you're saying. But I remember the first time we ever did it, I think it took us like eight or nine hours to do it. And now we can knock it out in less than an hour. But back in the day I remember thinking we're gonna have to do this every week. It took us eight hours because we didn't know what anything was called or where it was. Like me and my husband were like, our life is over. How are we gonna do this? But we know yeah now it does it all for us. Thank goodness. 

Rhandyl:

Yes. Yeah, I think the first time you do any of this you realize okay,  Organization is key. You have to be organized. Yeah, everything has to have its place every thing has to have its time not only because your kid's life depends on it, but  your sanity depends on it. So yeah, organization is, it's the only way to, to keep up with our daily routine for sure. And like monthly. 

Deonna:

And anything you can delegate to someone else, like if a nurse can do it, let them do it. That was really hard for me. You know, which there's some stuff we're uptight about giving away to somebody else. 

Rhandyl:

Oh yeah.Oh yeah, that was, that was hard, hard, hard for me, for years. It's gotten so much easier to delegate things out. Yeah. But it's good because, I mean, it just takes that burden off of me, and so, Oh, yeah. It, it's, Any little tiny thing. Yeah, for sure. 

And then, most of us, with , kids that have any sort of medical supplies that come once a month, and that's a whole thing. Yeah, a whole porch load of, 20 boxes. Yes and it's funny, I actually got this on my time hop this week, one of the first times that we had supplies dropped off at our house, I took a picture of it and sent it on Snap and said, “don't drink in Prime.” And it was, no, so many boxes. And it's, it's just crazy. Like yeah. And so that takes a good long time to unload everything and put it in its place once a month. 

Deonna:

And my husband does, my husband inventories all of it. Like piece by piece. So he knows  how many we got of this or that I'm like, I ain't doing that. Like you can do that all day.  And he does it because he wants to know. And there's been so many times that something didn't get sent in and he noticed it. Whereas I would have been like, Oh it didn't come in. But did you have to explain to your UPS driver? What is going on? Because he thought, what is this woman’s shopping addiction or something? 

Rhandyl:

Yeah, it's a lot and it takes a long time and so, yeah, so some months we don't have as many boxes as others, but um. so that's kind of just a general day if Remi's at baseline healthy and good to go. That’s our normal, that's just her routine, that doesn't include our own routine, our other kids routine, our work life, if something’s wrong, what so and so said to you at the store that's still bothering you or whatever, you know, 

Deonna:

That's just what you do with her. I mean, that's it. Yeah. Yeah. 

Rhandyl:

Yeah. So, but thank God for nurses because, I mean, just like Remi and Allie, they couldn't live the life, and be included in things like school and extracurriculars if it weren't for them because there's no way we could do it all. And so when we don't have them, we,  

Deonna:

We notice. Yeah. We notice. We notice. Yeah. Ha ha. Oh, man. So. Well, thanks for telling us all this stuff. It's a vulnerable thing to share what you do with your kid inside your house, because that's not something we all do all the time. But I think it is good for people to hear what we're doing and understand that it's not just what they see out at school or church that is hard. It's all the behind the scenes leading up to those moments. That is also really hard too. And. If y'all are new listeners to us, you can find out about our stories in, I think it's episode two and three, right? Yes. And so you can go back and kind of be like, why are they doing these things? What is going on with their kids?

So, thanks for telling us all that. I learned a bunch about what y'all do that's different than us or the same and so we all have our different things that are easy or hard, and it's just. It's all kind of hard, but yeah, thanks for telling us all about that. 

Rhandyl:

Yeah, I hope all of you caregivers out there listening to today's episode, juggling your crazy routines, whether it's soccer games or dance, piano or trach care and therapies, I hope you got something out of today's episode.