Spinal Cord Injury - Allie's Daily Routine

Rhandyl:

Hey, y’all, September was Spinal Cord Injury Awareness Month, that was last month. And if you've listened to us, you know that Deonna's daughter, Allie, has suffered a spinal cord injury in 2020 at the age of four. You can check out episode three- Deonna's Story for more details about the actual injury, diagnosis, prognosis stuff.

There is a lot of behind the scenes that most people don't know about caring for a person with a spinal cord injury. I mean, obviously, unless you're paralyzed, you don't know what that's like either. Today, Deonna is going to take us behind the scenes and describe Allie's daily routine. So Deonna, kind of explain the level of injury to Allie's spinal cord and how that has affected her. 

Deonna:

Yeah, so she has a C1 spinal cord injury and your C1 is the very top of your spine. It's the most severe spinal cord injury you can have. I don't know the exact amount of her back that had the stroke. I probably should know that. I guess when you go through this you know what she can and can't do all those little details don't matter to me as much anymore. I used to know, but yeah, it's, it is what it is. It started at C1, which is at the very top, like it's almost up where your brain is, you know, it's way up there. It's definitely the most severe, 

Rhandyl:

It's right next to your skull.

Deonna:

Yeah, it's right up there. And she has a complete C1 spinal cord injury, so there's complete and incomplete, and I'm probably gonna not say this exactly right, but the way I've kind of understood it is if you have a complete injury, there’s not really a lot of hope of recovery, the damage is done, it's there, you're probably not gonna get better. And I don't exactly know how they come to do that diagnosis because I have heard of moments where someone thought they had a complete one and they didn’t or like whatever so.. But we've been told it's a complete injury.

I have a friend who has an incomplete injury, and so, you know only time will tell I I don't know what's gonna happen with us or them or anybody but.. Yeah, C1 is definitely the worst you can get. The lower it goes down your back, so it's your cervical spine is the top portion, and then it goes thoracic and lumbar. And so the thoracic is kind of the middle, lumbar is the bottom. So if somebody has an injury down in the lumbar area or lower thoracic, they may only be paralyzed from like the waist down. Whereas somebody who's been paralyzed in their cervical, which is really high, they're gonna probably be a quadriplegic.

So Allie is a true quadriplegic, like no movement below the shoulders, no feeling, no nothing. And then there's other quadriplegics who, they are technically defined as that, but they have some arm movement, but maybe not great control in the hands or, you know, it's all over the place. Every single spinal cord injury is going to be different.

You could even have two C1s that are different. It's. It's so confusing. That's why Google is not my friend because it's just, there's, it's all over the place. But yeah, so we're kind of going to just go into what my routine with Allie is. And some of this is actually going to be similar to Rhandyl's daughter, even though she doesn't have a spinal cord injury, but 

Rhandyl:

Yeah, they both, I mean, so. the most similar things that Remi and Allie have are they're both trach and vent dependent and they have g-tubes. So some of their medical conditions and things like that are the same but not necessarily the diagnosis or the level of care. Everyone that's raising disabled, I feel like everyone probably has a routine that you have to go by especially if you have a medically complex kiddo. But everyone's routine is gonna be different, you know, depending on the patient's needs.

Deonna:

Oh, yeah. Well and depending on the day and I mean.. oh yea. We have to be big creatures of routine and habit and we've we have to be Incredibly organized and we try to allow some way to have spontaneity and just something like that, but for the most part we really have to stick to a schedule. And it's tricky. Like last night my son was playing football and it was running late and I was texting my son on his watch and was like, “Hey, we got to go.” Like, you know, we've been here. Yeah. And Allie's gotta get her stuff started, 'cause if you don't start it, It really can mess with her stuff.

I'm going to kind of go into what we do every day, and this is going to be kind of a typical school day situation that we talk about. We go to church on Sundays, so that's incredibly similar in the mornings cause our church starts early, but it's kind of nice on Saturdays. You can deviate from this a little bit.

So, Allie has to wake up at 6 a.m. every single day; earlier if we have to be somewhere really early, but this poor kid does not get to sleep in and just leisurely wake up like brother. And so right now we have a lot of nurses and if we don't have a nurse, then you can just fill in me and Dane's name into that blank space because it's us doing all these things.

And for the last two and a half years, we haven't had that much nursing support about half the week. I am so happy now that we have full nursing because it allows us to just be mom and dad and get to take a step back from that nursing role. So that's been nice. But yeah, she wakes up every day when it's dark outside still, poor kid and every morning they have to give her all of her meds and she takes meds for so many things.

Yeah, she takes meds that regulate her bladder. She takes meds for like her bowel routine Because when you get paralyzed those two things get screwed up really really bad and I can kind of talk about that in a second but..Paralyzed people shake really bad and it's not like a spasm really it's called clonus and it's a pretty crazy violent shaking. Her legs shake and sometimes her abdominal area will shake and it's crazy, but that's confusing to people because they think, wait, she's paralyzed, she's not supposed to move, but her brain is still connected. You know, to the rest of her body, it’s really screwed up but…

Rhandyl:

They’re involuntary movements.

Deonna:

Yea involuntary.. and she'll fling her legs up in the air and shoot her shoes off or she'll kick the table really hard. Like she has bruises all over her knees and shins where she throws her legs in the air and hits. 

So she takes this drug called Baclofen, a lot of people take it for a lot of different reasons, but that tries to keep her still and right now she's on a pretty low dose. But a lot of people actually end up getting pumps, and that may be in our future at some point. And then she takes meds for nerve pain and she doesn't complain about being in pain a lot, except for like her stomach hurting maybe or something like that. And paralyzed people can have kind of internal feelings, even though...

I mean, it's, it's really strange, like a lot of times they, yeah, like they won't have feelings in their arms or legs, but they'll have feelings in their abdominal area. And a lot of people who have lower injuries have severe nerve pain and they can feel like when they get a pressure wound or something like that. And so we're kind of lucky that she can't feel all the problems that she has. But it does complicate things because if she's in pain, she can't tell us, and then we have to discover it the hard way if she's bleeding or has gotten a burn, we can kind of talk about that in a second, but she's had some bad moments where she couldn't feel something really bad happening to her. Oh, man. And we found out the hard way. Yeah. Oh, that's a tough one. But she takes all this medicine for nerve pain and things like that. 

She takes medicines to help her sleep and an anxiety medicine at night. And so, some of these she takes in the morning, some at night, some both or three times a day. So, that's a whole thing on its own. Yeah. And, she also takes a med that kind of helps try to regulate her temperature, because when you get a C1 level spinal cord injury, you can't regulate your temperature anymore.

So when a regular person. Is getting too hot or too cold, our bodies can regulate that temperature for us to try to help us out a little bit, but she can't do that. And so if you're out and it's a hundred degrees outside, she's going to get a massive fever or if she even gets a tiny bit warm, she'll get a  fever. She has a fever every single day and Tylenol doesn't really make a difference. It does a little bit, but so that's also really hard because..

Rhandyl:

It’s probably more of a neurological fever, not like a source of infection.

Deonna:

It is and it's hard because sometimes when she's getting sick you're thinking, okay, is this a real fever or is this a neurofever that's going to go away in three hours?

Rhandyl:

Yea, that was going to be my next question, How do you know? Yea. How do you know the difference?

Deonna:

You really don't. The only way, I've kind of started to learn what numbers are the neuro numbers and it's maybe 99, 100. And then if she's getting really sick, like we're concerned she’s got like a UTI or something like that. It's usually like 101, it’s higher. So yeah, but that kind of is a way we figured out but she also goes hyperthermic all the time. And so, if you go out and watch brother play a football game or a baseball game and it's freezing cold outside She will drop below 94, which is dangerous. And so we have to bundle her up, and there's times she just can't go do stuff. Yeah. Because it's going to be too cold, and so That makes sense. Because she misses out on some things because of extreme temps. But, yeah, so she can't regulate her temperature anymore, so that presents a lot of problems for us, but and makes her feel bad,  cause she can still feel her face and her neck. She feels bad a lot. It'll keep her up at night or something like that. 

But She takes a few other things, but we always forget her Flintstone vitamin, like that's the one thing that's easy to remember and we're like, Oh yeah, I forgot about that. But and that all goes in her g-tube. She's had a G tube since the first or second week of this happening. What we have to do also is she doesn't drink enough. We have to think about what she's eating because she doesn't really burn calories the same way we do. So you have to manage that, which feels really icky to be thinking about for your seven year old, but we don't have a choice. And Yeah, so, and she also has to get a lot of water and Pedialyte because she can get dehydrated really easily. And so we know the exact amount of milliliters that go into her body every day.We have to keep track of it. And if we relied on what she drinks, she would be dehydrated 24 seven, which causes really dangerous blood pressure issues and things like that. So, yeah, do y'all have to monitor all the water and stuff with Remi, or does she drink enough? 

Rhandyl:

No, she won't drink fluid at all. She'll, she has a sensory thing against it. For a little while she was like taking small amounts by mouth and then something's snapped, switched, whatever, and she just refuses. But so we've always had to measure her intake and outtake. We still weigh her diapers and document all of her I's and O's and yeah, so yeah, she gets like a certain amount of water at different times of the day and yeah, through her G tube.

Deonna:

Oh, yeah, we  have this big pole that has a little bag hanging from it and you can fill it up to the right amount of milliliters that they need for that moment. And then there's this little pump that just pumps it into her body over the course of an hour or whatever.

And so we run it at night, and then we have to do it again when she gets home from school. And then if she drinks anything else over that, it's like, oh, cool, she drank something, but... She mainly likes to drink Dr. Pepper and stuff like that, so you have to make her drink the water through her g-tube. I know, yeah. She's like how I was back in the day. But yeah, so, it's nice she doesn't have to take all that by mouth, cause that would be a daily battle. 

In the morning,  they do all the meds. They do bladder things, or we do, depending on who's doing that. And you're doing all the normal stuff, like brushing her teeth, but she can't brush her teeth like a regular person. You have to brush her teeth and then suction it out with this suction machine, which sounds like an air compressor in her bedroom. Like it used to flip the breaker all the time, but it doesn't anymore, but it's her least favorite part of her whole routine. Like she gives us more grief over the teeth. I'm like, really? Like the tooth brushing is what's bothering you, but whatever.

But and then she has to do a respiratory regimen, and it is intense, and it's, your daughter does this too, some of this stuff, but, we have a thing, it's called a Volera, and it's, It's an IPV machine for the moms out there who know what this is all about, but it's basically this machine that pulses the inside of their lungs by doing little bursts of air..and she.. It has moments where it doesn't bother her at all. If it's a brand new one, it's really high pressure and she'll cry through the whole thing, but most of the time she does really well and it's not drama or anything. But it lasts for 10 minutes and it has albuterol in it, which I think a lot of people are really familiar with albuterol. Everybody's heard of that, but it's a medicine for your lungs that kind of opens you up and like, you know, helps you breathe good. 

Rhandyl:

When I explain IPV to people that don't, so a lot of people know what CPT is over IPV. CPT is like, you know, where they do the compression from the outside. They'll either do it manually or a lot of kids with  cystic fibrosis and things will wear the vests. But this is more, I, I explain it as like an internal CPT. Like it's breaking up the lung secretions internally versus externally. We don't have the same machine. 

Deonna:

Like it's a hospital grade machine. It's crazy, but We're lucky enough to have one at our house She used to do the vest but it wasn't working as well as this did so we switched over but she has to do that for 10 minutes. And so while she's doing all this stuff, she's watching TV week. My aunt bought her a big ol’ big screen TV for her room. So she gets to watch TV. I think she's seen every show ever made since the dawn of time. But but yeah, I mean, she's waking up and it just stinks. Like she's got to do all this and if we’re the ones doing it…

Rhandyl:

it's not like, “Oh, let’s just skip that today.”

Deonna:

No, skipping this stuff is dangerous, and so you can't ever get lazy, ever. You have to do everything in the right order, every single morning and night, or she could end up in the hospital, so it's, it's very weird, but. But yeah, she does this for 10 minutes every day and it's loud and I mean, it's crazy, but then she does a nebulizer of hypertonic saline, which is very, very salty water and, all of these are sterile, so it's not like we're dumping salt into some water and putting it in her lungs. These are all little sterile things. But she does one of those into this little nebulizer, and that takes another ten minutes or so at least, and so she has all that in her lungs, and now it all has to come out, basically. Mm hmm. And so, she does this machine. That I think, you said you, Remi doesn't do cough assist because it's too violent for her airway, right?

Rhandyl:

We've never had to put her on a cough assist. I don't know if it's because she, that's good.  She coughs well, and we are able to manage her secretions without one. Yeah, yeah, so we don't have to use a cough assist.

Deonna:

It would kind of scare me for y’all to try it because of the way her airway can do crazy things.

Rhandyl:

Yeah, I think that's another reason that they haven't done that is because of how floppy her airway is. I think that maybe the disadvantages outweigh the advantages to it.

Deonna:

Outweigh. Yeah. Yeah. So she's, she's been doing this since the very beginning, but cough assist, it used to be horrible. She would cry. She would dread it. It was horrible. But now she just like talks through it. I didn't think that would ever happen, but she does really good with it now, but good. Yeah. Cough assist is exactly what it says.  It just  violently shoots air into her lungs and sucks it out and it does it 15 times in a row. There's little breaks you  give her. So you're basically doing this machine. It's loud. It used to make her cry. She does well with it now. She is so tough. Like it does, we have to do it at least 15 times in the morning and at night. So she's being forced to cough 30 times, like it shoots the air in and then sucks it out. 

And when we were in Houston, they made me and Dane do it cause you can do it through a mask. And they were like, we want all parents to know how bad this is. So when your kid's crying, you'll understand why they're crying. Oh, wow. And it is a bad feeling. I mean, it felt like you couldn't breathe. I mean, it's a horrible thing to have to put somebody through, but she does well with it now. But yeah, that's at least 15 times and you basically, after she's doing that, and we even during the process of that, you're, she has this like suctioning thing that's hanging from her trach and you're feeding this little suction (like a straw almost) that's going down her airway, which used to also feel bad, but she doesn't complain about it anymore. But yeah, it's feeding a tube down her airway, not into her lungs, but pretty dang far down in there. I mean, it's really down in there. It's actually cut her a few times, because we went in too deep or something, but but yeah, you feed that down in there, and you're suctioning it out with that air compressor, and you're squirting salt water down in there, and that's where all the stuff comes up that she had from the night before or from that day or whatever. That's what keeps her going. If that machine was not Invented, she would be gone. That's how important that is to us. And so yeah, she does that and that takes a few minutes and everything.

Rhandyl:

I can imagine without all of that. Yeah, I can imagine without all of that, I mean she would end up with pneumonias constantly, and... 

Deonna:

Yeah. Well, like, the number one reason spinal cord injuries go to the hospital is pneumonia. The number one killer of spinal cord injuries is pneumonias, and I mean... She's had pneumonia so many times, I mean, so every time she gets it, me and Dane are like, oh, crud, is this the one that, you just never know.

But we've, we've learned how to manage pneumonia from the house, which I never thought we would be able to do. And I mean, you know, when it gets out of control, like where you're like, Oh, we gotta go. Yeah. But Luckily, we've been able to manage it for the last year without having to go in. 

But and then the nurse or us, we do all the things, you get her dressed. And I remember I was so afraid when we first started getting her dressed because you're like, I don't want to break a finger because her fingers can just get stuck in a shirt. And she can’t tell you.. Hey, you’re breaking a finger right now by not putting my hands right. Or yeah, it's like we don't wear jeans because they could cause a pressure sore if you were just sitting on those buttons. Or, we can't have any clothes that have buttons down the back because that button would be pushing into our spine all day, causing a sore. So she just wears tights and t-shirts and dresses and everything has to be really soft on her body.  

Rhandyl:

Do you guys have to watch for wrinkles, like wrinkles in the clothing?

Deonna:

Yeah. You can't have, you can't have a wrinkle in the back of like when you put her in her chair, you have to make sure her shirt is pulled down as best as you can because even a wrinkle in a shirt could cause a pressure wound, which a pressure wound is basically just where anything's pushing on her. It's kind of like bed sores. I mean, something's pushing against her. She can't say, hey, that doesn't feel good or hurts and it can turn into a massive, massive problem, which we've had a few times. She gets dressed. She has a trach. Most C1 level spinal cord injuries are trachs, they're on vents, like her, and you have to take her ventilator off of her trach to just put her shirt on. And I remember the first few times I did that, I was so scared, but yeah, she's not helping you get dressed. Yeah. It's scary. You're like, how am I going to put a shirt on her ever again? And she's not helping you get dressed, which you think sounds like a no brainer, but it's hard to get her arms through the holes of the shirt. There's certain clothes I've bought her and it was  a nightmare to get her in the outfit and I just get rid of the outfit. I'm like, we're not doing this again. 

So on a school day, we'll put her in her wheelchair, and then she has to “get mobile.” So basically what that means is, her ventilator was hooked up to a humidifier, that has to be taken off, and the vent gets put in a bag, the pulse ox get put in a bag we have to put an HME on her trach, which is kind of like a humidifier-to-go so that, and you do this and your daughter does this too. You do these things because if you don't have any source of humidity, that trach gets really dry and they can have mucus dry up in their trach or right at the base of it or really anywhere inside their airway. 

Rhandyl:

Yeah, the way I explain those HMEs, basically it takes the place… And the humidifier, it takes the place of your mouth and nose, because we, that don't have trachs, we are automatically humidified via our mouth and our nose, and they, with a trach, it bypasses all of that, and so  they have to have those things to wear, yeah, like she said, your secretions It will get really thick and then it can cause big problems with the trachs and airways and lungs.

Deonna:

Well, and like we were, like we were saying a second ago, pneumonia is the number one killer, but pneumonia is when your lungs are just compacted with mucus and it's hard to get it out and it's just sitting there. And if you see it on a x-ray, your lungs are pretty clear looking and you can see your rib cage and everything. But when you have pneumonia, it just is like, we call it white out. There's just white. And so when that stuff gets dried up and you can't get it out, that's dangerous. 

But during the day, and this is semi-dangerous some days. Like if it's a really dry winter day and she's on that HME for more than four or five hours, we kind of have some problems from that, but she's got to go to school and we try to let her have a life, but.. All that stuff has to be put in bags and changed and moved and that takes time. So if I'm ever late to anything, that's probably why I'm late, is because I always underestimate how long that takes to get all that stuff ready. 

Usually it's me and Dane doing it by ourselves or the nurses know how to do it, so that's good. But we get her mobile, and on school days and when she stays home, we don't get her mobile. We just leave her. There's this rolling tower that rolls behind her everywhere. And it has all her emergency stuff on it, like oxygen tanks and she has to have oxygen tanks on her at all times, which a lot of kids on vents have to have that just because you never know. But, we haven't used an oxygen tank, knock on wood, in a long time, but you have to have it with you just in case.

Yeah, but on school days, Hannah is our main nurse, or Heidi, our sub, they'll meet us at our house at 7:30, and we do all the normal things like breakfast and do her hair and all the things. And then, yeah, she goes with our nurses to school. They drive our van to school and they put her in our car.  Our car has a big empty space in the middle of it. And that's the one thing people always are interested in out in public is looking inside our van. I don't know why, but it has this, I mean, it's weird, like the H E B grocery delivery guys, they're always like, where do you want your groceries? And I'm saying, put them in right behind me and they always look at me like, are you sure? you know…and then they open the door and they're like, whoa, and then Allie will be right there…she’s like, hi. And they like, it always scares them when she's like right there. It's funny, but yeah, we like to mess with them, but yeah, she gets strapped down inside there with these big straps and all the things. She doesn't get out of her chair to go to school, and they take her into school all day and the nurses have to manage her. 

But whether she's at school or at home or anything, she's getting her vitals monitored 24/7 and not all spinal cord injury people do this. I think the lower you go, you may not have to do all that, you're not as sensitive to the oxygen issues or the heart issues, but we do have to because, like I said, her oxygen can drop to a lethal level, I mean, when she's completely well in just a matter of seconds, and so that just makes us all feel better. We just know, okay, we know her oxygen's above 90. If it's below 90, we do things. So she takes a suction machine with her and oxygen with her. So it’s better than nothing, but obviously at home it's better having all of our other stuff but…

Rhandyl:

Yeah, but it’s so awesome though that all of their equipment have backup batteries and they're chargeable and it's convenient. They’re able to be mobile and that's a miracle in itself.

Deonna:

They can be. Cause that was not the case. I mean, if this had happened 30 or 40 years ago, Exactly. I don't, well, I don't even know if she would have survived it, but I mean, also, like you've even told me that the vents have come a long way just since Remi's been born. Oh yeah. There's advances that are making it easier. She has this wheelchair that is like weighted down with stuff. And we have this Milwaukee charger that you can plug her vent in if it gets low or you can plug in her pulse ox and it just hangs off her chair and so it's nice having that electricity if we need it. And so, her nurses take care of that, or we do, depending on who's with her and..

Her, her biggest thing you have to watch, with her nurses, obviously her oxygen, but she has this thing, and I think most spinal cord injuries can have this or, or will have this, but it's called autonomic dysreflexia. And it's basically where if any little bad thing happens to her, like the wheelchair's pinching her skin and it's hurting, or she gets a burn, or her bladder gets too full, or any little pain or discomfort, her body doesn't know how to say, okay, that hurts, but I'm okay. Her body flips out and it can send her into fatally high blood pressure situations. And this happens a couple times a week, but it's usually because we didn't do something in time or we missed something or, you know what I mean, but uh, basically…

Rhandyl:

Oh wow, a couple of times a week this happens?

Deonna:

Yea, it happens a lot, but basically what happens is her face breaks out in a really crazy red rash and it stays, it's so weird, her skin stays its normal color all around her lips, but everywhere else it's blotchy, red, crazy, and it's above the injury. So this happens above the injury, with any injury. So if it's lower, you might be having more of your body do this, but since she has such a high injury, just her face will turn red and her neck kind of, and she'll start sweating like she has been working out for four hours straight. It's like dripping off her face. Oh wow. And when that happens, you're like, oh, we have a problem. We need to do this or do that, or check this or check that, and usually it's a bladder issue or something like that nine times out of ten, that's what it is. Okay, but we we haven't had any Massively dangerous episodes of this yet, but it does happen a lot. It's just part of a spinal cord injury and it freaks people out because she looks terrible and she'll say, “I'm sweating, I'm hot.“ And she'll be super hot above the injury, but then below the injury, she'll be ice cold. 

And so it's crazy to witness. We're all used to it. Cole will say, mom, she’s breaking out. And you're just like, Oh, crud, like we got to do something right now. But like one time she, her pulse ox, which a pulse ox is what's measuring their oxygen and their heart and stuff. Her pulse ox, the wire came out of it and broke, and it gave her a third degree burn on her hand and we didn't notice it until it was already really bad. And we looked down at her and we were like, can you not feel that at all? And she's like, what? And I mean, it was bad and she had that reaction, so I mean, we have to really check her body every day. Like the other day we saw a big red mark on her back and we're like, where did that come from? What is that? You know, so we do have to check her body pretty frequently.

They come home a little early (from school) and then she has to do more meds, we do more bladder stuff. Sometimes she has to do respiratory treatments again if she's feeling a little junky and not good, but not all the time. Like, do you guys have to do that in the afternoons ever? 

Rhandyl:

Yeah, sometimes depending on if she's having allergy symptoms or if she has some cold symptoms or something, we increase our IPV regimen, like we'll do it right after she gets home from school and then again at night and in the morning, yeah, and then sometimes when she's really sick, we do it every three to four hours.

Deonna:

Oh, yeah. I mean, that's how we stay out of the hospital with pneumonia is you're doing it a lot more frequently. It's kind of to mimic what the hospital does because that's what they do. But she kind of does this whole thing over again, a little bit of it, not as intense, but she has physical therapy and occupational therapy, maybe three to four times a week, depending on what's going on and they're both really great. They're our friends now. it’s like what you do in your job, but yeah we're buddies with them.

Rhandyl:

Yea, so I was going to ask…It’s definitely, so spinal cord injury is definitely not like the population of patients that I treat so I'm curious what OT and PT looks like for Allie. Like what are some of her goals for those? 

Deonna:

Yeah, I mean, they..Yeah, they have to have goals and basically hers have changed throughout the last few years, at the beginning it was… Can you even, barely sit up in the hospital bed at 45 degree incline without having such a bad blood pressure spike that you nearly die. So it was a slow journey to even get her in the wheelchair. So that was their main focus the entire time we were at Texas Children’s, was getting her in the chair so she could come home. But now,  they're about to start working on her power chair once she gets it, how to use it and just getting good at that. 

Rhandyl:

That's gonna be awesome. 

Deonna:

But we haven't got it yet.That's like a whole other nightmare of a story, but I feel like everything's a nightmare of a story when it comes to getting equipment, but the, the big expensive stuff, but or PT and OT, they're kind of similar a lot of the time, which with a lot of kids, PT and OT are very different what they work on, but they stretch her out really, really good because spinal cord injury, people can get really stiff because they're not moving. So they make sure they're maintaining that range of motion so that they can get dressed and sit in their chair. And honestly, there's always that what if in the back of your mind when you have a spinal cord injury. Oh, what if they had some sort of movement or feeling come back? You can't have their hands go crazy and not be right. You have to keep all that right just in case something was to happen. But and they basically tried to get her to sit. She can't sit up on her own, but. Just kind of holding her head up on her own. That's something big they're doing right now. So she's getting better at it. I thought they were holding her head up yesterday and they weren't.

Rhandyl:

That's awesome!

Deonna:

Yeah, I know. I looked over and I realized her hands were free and I was like, what is happening right now? And, and she loves them. We have so much fun with them. They’re a fun addition to our routine and yeah, so we love them.

Rhandyl:

That's awesome.

Deonna:

But then we basically… so far we can lift her ourselves because she's still a little kid. Eventually, we'll have to get a lift and do all that ,which I am not looking forward to, but but yeah, I still can lift her in and out of her chair and everything. 

We're supposed to put her in a stander every day and we're terrible at this. But a stander is this massive machine that's in our house. It's hilarious. It's bright orange, but we have this also and that, you put her in that when you're laying back and it stands her up as if she's standing up. And that kind of helps her because a lot of paralysis people break bones because they aren't weight bearing on that.. Mm-hmm. on those bones and that's what keeps our bones strong. And so there's so much stuff in our house that people are always like, what is that thing? And, you know, yeah. It’s hard to explain all the things.

Rhandyl:

Yea, we have stander too.

Deonna:

Oh, you do? Mm hmm. Oh my gosh. Yeah, I guess she doesn't weight bear either. Yeah. But, towards the end of the night, she eats by mouth, so we'll eat dinner and then she does a shower in a special, roll in shower that was custom built for her. Basically, it has the handheld, it's not like shooting water in her face because she can't move or anything. The bath chairs are kind of like this lounge chair, it's that mesh, but it's It's way up at our level, so it's like four feet in the air. So we set her inside of that. It looks like a little pool, lounge chair, kind of mm-hmm. But and of course it's pink 'cause everything we order is pink for her. Mm-hmm. We do this shower, you have to cover the trach area so water doesn't just rush into that area. And she hates getting her hair washed, that's another drama we have, is she does not like hair wash days.

We're like, it's like the teeth and the hair, what is it with you and this, but we have music in there and we always are singing. She's real into Taylor Swift like this week, so we've been listening to a lot of Taylor Swift. When she's in the shower, we can kind of do that body check to make sure that she doesn't have a cut or a bruise or a pressure sore or something like that.

And  then we do trach care, which you do too but.. yeah, that's a two person job in my opinion. Dane can do it by himself, but he has gigantic hands. That's not a one person thing for me because one person has to hold the trach in place because if her trach comes out, she flips out. Not every kid's like that, but I sometimes make my son do it with me, which he does not love because it's a lot of pressure. He's holding her trach into her neck while I'm quickly cleaning her neck and checking it for pressure wounds.

She's had a pressure wound under her trach tie, which the trach tie is the little necklace they wear to hold the trach on. And she's had a pressure wound under her trach tie for a year and a half. I mean, there's, they just don't go away, they’ll bust back open and it's, I know it's always something with that wound. But we do that, every night.

Rhandyl:

Definitely a two person job for us as well. Whenever she was young and a baby and like smaller and not as mobile I would do it if I had to by myself, but no, it's really  not smart to do.  

Deonna:

Oh, yeah, and Allie's talking through the whole thing, so her chin's moving and, I'm like, okay, let's not talk for a second. But trach care is something that a lot of us do and Oy yoy yoy. We actually take the trach completely out of her neck once a month. Some people do that much more frequently. We, we do it if we think maybe something's wrong, but we completely take that out of our neck, which was terrifying at first. But you put a new one in that's fresh and clean and that helps prevent infection, and they just get kind of old and grody at some point. So we switch those out and then you have to go clean them and it’s a whole thing.

Rhandyl:

Oh there’s a whole process- clean, sterilize, all the things..

Deonna:

There's a process to everything, yeah, I know. But so we do that every night and then usually our nurse gets there around this time. And then we have to repeat that entire morning routine at night plus some other things. And so, she is doing so many treatments and meds and just all the things and so she's so patient because it's a lot of just laying there and us messing with her. And in the meantime, we're trying to have a normal experience, like read a book or just do something normal, but usually we're just all about having to do the work, it's just the way it goes. So She definitely doesn't get to do all the normal things other kids get to do. But, and then the nurses basically just monitor her all night long, they stay awake all night long, sitting outside of her room and they have to keep water in the humidifier and just watch her vitals and stuff. 

Rhandyl:

Now, in the night, do they reposition her? Does she have like a positioning routine, regimen, to prevent pressure sores? 

Deonna:

So we used to. I'm gonna get in trouble for my other spinal cord people that are listening to this at some point, but we used to rotate her a lot. She would be on her back, we would move her to her side, we'd put her on her back, other side. We were moving her constantly, and she was waking up, every single time you touched her. And so, we don't move her as much, but she doesn't really get pressure wounds on her back, or somewhere where you'd be like, oh, that's... We need to move her, but I think when she starts to get heavier, that will be more of an issue.

She has a pretty cushy mattress that's made for people that have spinal cord injuries. And then she has another mattress topper that we'll probably eventually have to use. And it has air and . The left side will get inflated, then the right side will get inflated, and just that tiny, tiny little movement prevents pressure sores or bed sores, I guess is what most people call it. But but yeah, so we do have those. But she has these pillows that are crazy heavy. And we put them under her arms and under her legs and all this stuff. And we get her in that perfect aligned position. She can't lay all wonky crazy like a regular kid because her spinal cord will eventually be like…oh, that's how I should grow now.

And so we have to get her just perfectly lined up at all times, even in the chair. If one hip is a little bit high, she's going to, which they said, it's not if you get scoliosis, but when. So I mean, at some point she's going to have some curvature. She probably already does, honestly. But but yeah, you're supposed to move them a lot, but there's a lot of things you can have and do where you don't have to move them as much because I think as she gets older, if she wakes up, we'll be like, go to sleep, you’re fine. But she's still a little kid who's like, no, I'm scared of the dark or, you know, whatever, whatever her reason is for staying awake. 

But sometimes we have to remind ourselves that she's just a regular seven year old who is gonna give you trouble at night. Sometimes she stays up all night long just partying with their nurses, but, yeah. But 

Rhandyl:

Yeah, we had that this week, too. 

Deonna:

Yeah. They’re always like, I am so sorry. But when it's with us, she does it too. But we monitor all that when we're sleeping out there. We sleep on a mattress outside of her bedroom in this little blackout tent and it looks so stupid if you come into my house, it's so funny, but we put it away if we're not using it, but we do use it a lot.

Rhandyl:

Hey, you do what you got to do. It’s awesome. 

Deonna:

Yeah, our houses have so many weird things in them, but… and then she, yeah, she basically has these like splints that her hands go in to keep her hands in the correct placement and shape. And then she has these things called AFOs, which basically hold her foot where it's pulling back because your foot can just drop. Yeah, it's like a 90 degree angle. Yeah, and so the AFOs hold her feet. She has those for day and night and we have to put them on like two hours on, two hours off, or she’s got softer ones for the night that you can leave on all night. But  that's what a typical day is for us and that's on an easy day. If she's sick, like you said, there's so much more that goes into this, and the stress level is at stress level 10. Because you don't know, oh shoot, am I about to go in the hospital over this?! But that's what a typical day is in the life of a very high level spinal cord injury. And every injury is different. 

Even though everybody knows what being paralyzed is, not very many people know someone that is paralyzed. It's just such a rare thing, really. And so, I hope that this episode can make other parents who are going through this be like, oh my gosh, I'm not the only one doing all this crazy things and I hope that this episode also shows people who haven't been in my house, in that kind of behind the scenes situation, what it's actually like. Because it's a lot harder than just having a kid in a wheelchair who doesn't move. It's very complicated. 

Rhandyl:

Yeah, I, I learned a lot. We’ve talked about our routines and things. We have similar parts, but there is so much to spinal cord injury, just like you said, just thinking about all the other accessories that you guys have to to do, like the pillows, and the hand splints, and just all the little things that you guys do throughout her 24 hour routine that keeps her healthy and out of the hospital, and to prevent her from going into that crazy episode that she has when things go wrong.

**Disclaimer

Deonna:

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.