Rhandyl: [00:00:00] Hey, y'all. Welcome back to part two of our conversation with Erica and Alyssa of Caffeinated Caregivers.

This episode, we all four discuss our advocacy journeys of getting our disabled children transferred to hospitals for higher level of care. These decisions are not easy. Hospitals don't always make this easy, but we hope that our stories inspire others to make sure your voice as a caregiver is heard and validated

Deonna: so something that you guys both brought up in different ways, and something that I have had a very horrible experience with, is when you're you're at a place, like you're at a hospital, whether that's a small town hospital or whatever that may be, and you want to transfer to another place, whether you think that your kid is being misdiagnosed or just, I don't know, like sometimes some of our kids' disabilities are just over someone's head, and you just can feel it.

Like, you know [00:01:00] they've done all they can do, and it's time to go to the next level. And I, uh, Rhandall knows this story, but I had a really bad experience with this. I was at a hospital later on in her injury. I didn't feel like we were getting the right care. She needed a surgery. I didn't feel comfortable having the surgery there, and I kept asking to get transferred out, and they were like, "No, we're gonna just do it here," and they were straight up telling me no.

And I think that's, you know, we all have a moment when we feel like we snapped as a mom, and that was mine. Because, uh- Mm-hmm, advocate ... I wanted to be back in Houston where I felt comfortable, where we had been through the beginning. And so I called the care manager in Houston Asked them if we could come back. They said yes, and without asking permission of the hospital we were currently in, they sent the jet, and they came in and they got me.

And it was the [00:02:00] most awkward experience of my life, but, you know, they were making me feel like we couldn't leave. Like it f- it felt like a prison. I mean, it was bad, you know? And I... So I mean, it's hard because I think a lot of parents listening to this, they might be in a hospital and they're like, "Oh my gosh, I got my first opinion. They're saying this." Yeah. "I can't."

So what do you guys, I kinda wanna- What's your advice for that? ... fill in- You know. 

Rhandyl: I just kinda wanna fill in on this a little bit too - 'cause I've always told any caregiver, especially new caregivers to this world, my experience is very similar to, , you guys. Mm-hmm ... whereas Deonna's was like later on, but we had a very extensive NICU stay. Um- Mm-hmm ... and I learned, it was hard. It was my first kid, ,... Like these feelings that I'm having are actually mom gut. It's something where- Mm-hmm ... ... and so if you start feeling these intuitions I would just encourage any caregiver, anyone in a, situation where your kiddo's disabled or there's something going on, long hospitalizations, if you feel like [00:03:00] something is not right, not happening, whether it's you wanna transfer somewhere else or not, really speak up and just tell them, tell your care team what you're thinking. Like something's not right, whether that be, anything. - Mm-hmm ... you just throw it out there. Because honestly, nine times out of 10, my intuition was right.

And , I didn't have as a traumatic of an experience with our transfer. It got to where after trying to extubate my daughter multiple times and she just wasn't, it wasn't working, and we ended up finding out she had a completely collapsed trachea. And thankfully, my husband and I both have medical background. I say thankfully, it was sometimes a little too much, we-knew-too-much situation. But we started asking pretty early on for a higher level of care, and thankfully, our neonatologist was wonderful and, , they got that process going, and then we ended up a year at a larger hospital in Houston which is 10 hours away [00:04:00] from our home, our family, everything like that. But that's why she's thriving.

But yeah. , I'd like to hear y'all's advice to caregivers in a situation similar , to this, if they're in this situation. 

Alyssa: Yeah. I can go first if you want, again, Erica, and I will try and keep this brief, but there was a lot of buildup to our hospital transfer, right? So like I said before, Gemma had had that surgery when she- the, her first shunt brain surgery when she was eight days old, and she came out and, like, it's hard to describe, right? But it looked... You know, surgery is never gonna look good on an eight-day-old baby. No. Right? Like, their heads are small- Yeah and they have, you know, like it just looks terrible. Like, they're intubated still.

But, , even with all of that, you know, I'd had surgeries before. Like, my mom was a nurse. You know, she was an OR nurse, right? So, , my mom had some experience with , being in these settings, whatever. And it didn't look good. The surgical site didn't look good. Nothing about it looked good. And The NICU doctor that was the attending, who was, like, rounding at the time, didn't seem [00:05:00] happy when she came out. But I was like, "I've never been in this situation. Maybe this is just, like, what goes on." Yeah. Three days later, her shunt starts leaking, from one of the sites because, again, like, the stitches aren't closing.

And I asked that NICU doctor. I was like... You know, he was telling me, like, what's going on, what they're gonna have to do, that they're probably gonna have to redo the shunt. And I was like, "How often do you see this for this surgery?" And he says, "In a 20-year period, I've seen a handful of these in my life that, like, the shunts haven't healed at this stage, this is actually... When we're talking about brain surgeries for babies, , this is the common brain surgery that- Yeah ... tiny babies like this are getting usually. So that was a big red flag. Um- yeah 

We had other things that were already happening, right? And this is not like a little podunk backwater- county hospital. You know, this is one- Yeah ... of the leading hospitals in the country. This is not oh, we need to be at a different hospital because, like, they don't see rare diseases or whatever here. This hospital should be prepared for all of these things. Um- Right ... but the diagnosis process was, , very contentious. It was clear, , pretty early, kind of like I said earlier, that there were [00:06:00] almost, , two, , factions of opinions between, the medical staff. Mm-hmm. Like, both the nurses and the doctors. There was, like, one side and then the other side. And it, there were other things happening in that NICU, not just with Gemma, that, like, there were also- Yeah

other kids, on two sides of this. So, , there were things going on, , externally from that. But, like, we were able to, pick up on that, and I also think Gemma was, , getting caught up in that, right? So, like, there's these doctors that have this opinion, and these doctors that have another opinion, and then, they're both telling us things. And I'm like, "You're the doctors." Like- Yeah ... I, you know, like you're both-

Rhandyl:  No continuity of care. Mm-hmm ... 

Alyssa: you're coming to us... Right. And you're telling us, like, almost opposite things at certain times. And, , a lot of you are, , hinting very clearly at, she has this other diagnosis, or she has this thing, or, like, we don't think this is right. But they can't say it outright because then- Right ... somebody's, like, gonna get in trouble somewhere. Ugh. And it really all came to a 

Deonna: head when- And in the meantime, you're losing your confidence in all of them. 

Alyssa: Yes. It was a really all-around bad situation to be in. Mm-hmm.

Um, it was bad for Gemma. It was [00:07:00] bad for us. I can't imagine it was, like, good for any of their careers either. It came to a- Yeah ... head. It was, like, a Sunday night for those of you who had, weren't in the NICU at one point- ... the attendings are usually different on the weekend than like your- Nothing happens on the weekend monday through Friday doctor. Nothing. Nothing happens on the weekend. They're on vacation. They're on vacation. It's quiet. There's not people like sneaking around and stuff.

So related to that, one of these doctors who had been hinting very heavily that something else is going on and they basically came to us and were like, "I'm not supposed to tell you this, but you need to ask for a transfer to this other hospital." Good for them. And again, this other hospital- those whispered conversations. Yes. This other hospital is slightly smaller maybe, but it's a mile down the road, and they have the team for the disease that they suspected that Gemma had, which she did have, because she is like the classic case for what she has. Yeah, textbook. She has the most common genetic marker. She has all the symptoms. , She has a very severe presentation of it. , It wasn't a mystery. It was to us, but like apparently- Well, and that's just- ... it was not a mystery to 

Deonna: them ... [00:08:00] drive down the road. I mean, that's nothing. Literally- but it feels big ... right down the road ... I mean, you can't just do it- yeah in your car. 

Rhandyl: It's so- Well, I mean she- It's so frustrating 'cause- - you know, you honestly, you think about in hindsight about why they wouldn't bring that up, or just for the sake of, Gemma to just transfer her. But there's so much racket around the medical world- It's ego and a lot of it is ego, but a lot of it is- Mm-hmm ... financial. 

Alyssa: Um- Mm-hmm. There was also questions- Super frustrating ... of like is there gonna be stuff that they find about her medical care that maybe could have been done differently if we go to a different- Mm-hmm ... hospital? Yes. Is that gonna be problems for all of us later?

Rhandyl: Malpractice. 

Alyssa: We were never- Yeah ... in a position to honestly, unless it was life-altering, to go down any of those routes, 'cause we were exhausted, but like- Yeah ... looking back I'm like, okay, well, they were probably worried about liability stuff mm-hmm. 

But anyway, the doctor came in, they told us, "You need to transfer." That was a Sunday night. The next day, Monday, we come in and I'm like, "I want a transfer. Transfer her." [00:09:00] And it's back to, the team that doesn't really wanna transfer her, and they did not wanna transfer her. Oh ... I said that in the morning. The minute I walked in at 7:30, that's when you can start visiting hours in the NICU, and I was like, "I want a transfer right down the road. Send me a transfer." I, look back on it and I'm like, this is probably, medical interface-wise, like, still maybe, , the most stressful day of my life, 'cause I was there by myself. Like- Mm-hmm ... Sam was back at work in Erie, which is an hour and a half away from us at the time. My mom wasn't there. My mother-in-law had my son, locally in town, but he couldn't come into the NICU. So just me in here by myself, and- Yep ... every hour, like, on the d- hour, they're sending another doctor, another nurse, another PA to be like, "Are you sure you want this? Are you sure you want this? We ha- it might take us a while to get all the paperwork together," like, all day long. Start it. And- yeah ... yes, right. Exactly. Get it done. Print it out. And I was like, "I, I want this transfer. Set- get me a transfer."

And we finally had one of the NICU nurses that had been with Gemma for a while, she was a charge nurse. She pulled me [00:10:00] aside, and she was like, you're really hard to get a read on," which, fair, because I was not emoting at any point at all- ... 'cause I was, like, dissociating as hard as anyone's ever dissociated in their life. I'm also in shock at this point with all this stuff. Yeah. Um, and she's like, "But tell me what you want. If you want a transfer, I will get you a transfer." And I was like, "I want a transfer. Get me out of here." And she did. She got all the stuff together. She made it happen.

They still, on Gemma's chart, they, basically they marked it as, like, a voluntary transfer, so we did pay out of pocket for that ambulance ride from one hospital- Ew to the other hospital. Yeah. And I was like, "This feels a little bit retaliatory-" Cherry on top "... I'm gonna be-" Mm. "... totally honest." Oh, yeah. For some fun. 

Yeah. And you know, looking back, it's like they didn't have a good reason. There was the team for the literal disease that Gemma has that's, like, extremely rare. It's the only, , really specialized team like this, , in the whole country, and they don't have it at the hospital that she's at, and they know that they have it at this team down the road. So, all this stuff can, , get caught up in, , why medical people, make the [00:11:00] decisions that they do.

But I think part of the eye-opening process for this for me was that, like, wow, these are really flawed people making these decisions. Sometimes- in the dark like we are, right? Like, I thought this was gonna be, , a really professional- Yeah ... team of people who, , have my daughter's best interest at heart. And I mean, to be fair, I can't say for sure that they didn't, right? , Maybe they had other concerns. You don't know. I don't really know. Yeah. They were very sketchy about the whole thing. You know, like, there was a lot of information that we just never got and a lot of things that they wouldn't really, talk to us about.

But, you hope that, , these people have this, , certain level of expertise and that , they aren't gonna make mistakes or make emotional decisions like this, and it's not true. , We're all human. We all can get caught up in that. Right. Mm-hmm. And related to that, , if you're having those feelings, like, as a parent, they are just as valid potentially in these situations, right? Because, like- Mm-hmm. Exactly ... you're also another human, except that you're much more responsible for this human that is having medical care done to them. And invested. And invested- Yeah ... because it's your child, right? So- [00:12:00] yeah ... 

you know, I think there are these conversations about, , oh, well, you're getting too emotional, and there's tons of conversations to be had about if you start getting very emotional in these situations, like, how badly that's probably gonna go for you in these settings. But I also don't think that you can write off these, , really, like you were talking about, Rhandyl, like, gut- Yeah ... mom feelings- Yep ... because they probably do mean something, you know? 

Rhandyl: They do. 

Deonna: That's what, that's our crazy story. When we were at our... We, we've been in a lot of hospitals 'cause we moved and stuff during this.

But in our very first hospital, I remember they were trying to transfer her out. They knew that she was not, You know, they were like, "She needs more care. We need to move her out." And so they were looking at all the different hospitals in Texas. And it was funny 'cause I, they kept telling me, we can't move her.

We can't move her." And she was, like, coding a lot and stuff like that. So I got on the phone and started calling these hospitals and being like, "Do you have a bed? This is the situation." They found out that I was [00:13:00] calling and I got in trouble from one of the doctors for calling. And I think she expected a apology from me.

I don't know what the deal was. But- Mm-hmm ... and I told her, and this was back when I was, like, way nicer than I am now 'cause it was so new. But I just remember being like, "I will never apologize to you for trying to keep my kid alive. I will never ap- I'm gonna do crazy things, I think. This is just what my life's gonna be now."

Mm-hmm. Because it was like, I said, "I care about her a million times more than you do. You don't care about her the way I do. It's, I want- No ... this to work out," so yeah. I mean, it's, I just thought of that when you were talking about that. Like, they are not invested- Yeah ... so we have to be the crazies, you know? It's just so tiring. 

Alyssa: At the end of the day, they don't have to take this kid home and figure out how to take care of them- No ... and all this stuff. And they are also not the ones that have to, like, heal from whatever trauma happens to both you- Yes ... and your child [00:14:00] here, right? Like- Exactly ... they can make these, game time decisions, and they have this sort of expertise. But, , I think all of us - here have learned in the seven, eight, 10 years that we've been doing this that, they don't understand what our lives are like when we go home. No. And they do not have the full picture of the things that we're balancing at any given time. And it definitely- Mm ... comes to a head in moments like these, too.

Erica: Agreed. 

Deonna: Yeah. No, it's- Yeah ... so true. 

Erica: Yeah, I mean, my situation mirrors what you guys have shared. I think, you know- Rhandyl, you said it best when like you had... You said it best, but I also have a disclaimer. You gotta trust your mom gut. My mom gut has been wrong on this journey many times. I'll be the first to say it. Yeah. But in those early days, it was so spot on. It was spot on during my pregnancy and I just didn't know it. It was- Yeah. Mm-hmm ... spot on when, I said, "She's having a seizure," and everyone was like, "Oh no, that's just normal."

And so the [00:15:00] advocacy that I had to do, was pretty immediate. I had one moment of being a newborn mom and in a flash I was an advocate. And I think that came with defensiveness, it came with distrust, it came with fear because- mm-hmm ... I wasn't really being... You know, here I had spent a pregnancy saying, "I think something's wrong," and now I'm holding a child and all of my fears were warranted, and I'm seeing that firsthand. Mm-hmm. And now I'm having people tell me I'm not right about these other concerns. So I jumped into the role of advocacy, just like, no buoy, no arm floaties- Mm-hmm ... just like right into the- Yeah ... deep end. And it was all happening on a gut instinct.

There were things that I knew, like, 'cause I also had a healthcare background, so I knew what infant seizures looked like 'cause I had cared for infants with [00:16:00] seizures.

I, I knew that I could transfer, but it still was a concept, like I could request for my daughter to be transferred, but that was a concept that I almost was uncomfortable with because the other thing that I knew about healthcare was that every way that I behaved and I acted would ultimately impact the care that my child received.

So immediately- Totally ... I was like- So true ... I gotta be strategic. I gotta be diplomatic. But when I was doing those things and I was still being met with , dismissiveness or even , being gaslit. Mm-hmm. When- Mm-hmm ... it took forever for them to do an EEG, and then what do you know, I'm right, and then it took forever for them to do a MRI. They lost the images. Had they gotten the images that I had to ask them- Like, I wanna raise them ... where are they? Yeah. I had to ask where, you know, "It's been four days. Where are the [00:17:00] MRI results?"... had they seen those four days prior, they, they would've made the phone call they finally made, which was to the nearest children's hospital that's three hours away, where the neurologist says, "We highly recommend you get this child here."

So- Yeah ... you know, at this point, five days have gone by and I'm trying to give a little girl, a newborn baby, phenobarb in breast milk. She's seizing nonstop. She can't drink the milk because she can't stop having seizures, and they're just like- Mm-hmm ... "Keep giving it, keep trying." No talk of G-tube. No offer of NG tube.

Rhandyl: Oh my gosh. 

Erica: So I was also not- Wow ... at a pediatrics hospital, but I was at a local hospital that had a, quote-unquote, "special nursery." And I was very fortunate to have friends who are also healthcare professionals, friends who had had some sort of similar experience, who encouraged me, like, [00:18:00] "Ask for a transfer. You gotta get her out of here." And- mm-hmm ... I think that there was just a situation that went down one day where I was like, "This-- I'm at that point. I'm at that threshold. The gloves are coming off." No more- Yeah ... Mrs. Nice Lady. Like, I want that transfer. The doctor looked me straight in the face and said, "I would do the same thing if I were you."

The next thing that happened was a stack of paperwork- Wow ... that had the same box checked that Alyssa mentioned, voluntary transfer. I said, "Oh, hell no." You are going to-" Yeah "... fix this because you guys are not capable of stabilizing my child or getting her the care she requires. This is medically necessary. You just-" Mm-hmm. "... sat here and told me you would do the same thing if it were your child."

I think, the process of going to a new hospital felt to me like, okay, , this is where we can start to, get some stability. Um, we can really [00:19:00] start getting, in my mind I was still very convinced there was a cure, a fix. Yeah. You know? There. Yeah. Yeah. Oh, yeah. 

Rhandyl: Yeah. Same. 

Deonna: I remember that phase. 

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Erica: It was like so comforting to be at an actual children's hospital with a team of experts. Even if they didn't know what my child had, there was comfort in seeing the quality care she was getting. The NG tube- Mm-hmm ... right away, like, all the- Yes monitors on her. So yeah, I mean, when they were like, "We're, we would never put phenobarbital in her mouth. That will go through her tube. You can work on breastfeeding her milk." What were they thinking? But it was so validating- Oh, yeah ... to like that mom gut. Yeah. 

Deonna: Those are terrible conversations.

Erica: Yeah. Mm-hmm. So I will say, though, I've had, I had another experience of needing to transfer hospitals like you, Deonna, where, when we realized that we were going to have a long-term relationship with the hospital system, we switched [00:21:00] gears and decided to go somewhere else, and that's ultimately where my son- Mm-hmm ended up spending his time in the NICU. And that was like a totally different experience because there was autonomy. It wasn't necessarily a crisis. It was something I felt I got to choose. Mm-hmm. A- and I felt very welcomed there with this choice. So my- mm-hmm ... advice to parents, and I do give this, is to think of a few things, which is, one,

Act on that gut feeling. If your child is not getting the care that you know in your heart of hearts they deserve or need, you have the right to a second opinion, and you have the right to ask for- mm-hmm ... a transfer, a medical transfer of care. The other thing is sometimes- 

Deonna: Not a voluntary one. Checks a box.

Erica: Right. The other thing- ... is that sometimes what stops us is that distance, right, Rhandyl? 10 hours is- yes. That's a day. It's difficult. And- yeah. We get it ... a lot of families don't have [00:22:00] the luxury of being able to like, i- what 10 hours means for them- No ... is they won't see their kid. A- and that's a hard decision Yeah.

Deonna: You have to pay for hotel 

Erica: we gonna leave them behind? So what I've told families in this situation is, "I realize it's a long distance, but it's the difference between quality expert care and your child's well-being and life to ultimately come home and thrive," like you described, Rhandyl, nine years later.

Rhandyl: Exactly. 

Erica: Versus continuing down this road of stress, of inconsistent messages from doctors from not having a care plan. It is a distance and it is hard to justify sometimes, but if it means that your child may even have an iota of better care, I think the four of us can agree it's a difficult decision, but it is worth it in the end.

It's worth it. 

Deonna: You brought up a good point as far as, like, the privilege of it all. You know, I kind of have started realizing in the last couple years, I was highly [00:23:00] privileged to be able to do what we did back then. Like, to go- Mm-hmm ... be in a Houston and, be far away. And a lot of parents, it comes down to money, and it's so hard- Mm-hmm ... ' Your kid's life can be on the line sometimes. And you're like, "I cannot afford to lose my job and go to 10 hours away." I mean, it's just- Mm. The things we have- Money and- ... to think about ... transportation. People think it's so black and white. Yeah. Like, it's your kid's life. But I mean, there's so many factors that come into play with transfers. It's hard. 

Alyssa: Yeah. , I had multiple family members, but, , my mother-in-law, my mom, and my aunt-in-law, is that, my husband's mom- ... um, who lived in New Jersey,. So, like, this was not, , a little trip down the road for her., This was an eight-hour road trip for her to come out. Mm-hmm. 

At various points, all came out and lived with us in Cleveland an hour and a half away so that my son could be out there with us. Like, my mother-in-law I think, , paid for an Airbnb- Mm-hmm ... the whole time that she came out there, and the rest of them would, like, stay periodically in Ronald [00:24:00] McDonald House. So my little two and a half year old, three and a half year old son didn't have to be away from his mom for two straight months, right? Yes. So, like- Yeah ... ev- I would stay with Gemma in the NICU, and then I would come home to wherever we were staying and stay with my son, and that was, game changing for at least having some stability while we're going through- Yeah this, like, very upsetting time. Mm-hmm.

And the other thing I will add about the transfers is that even as bad as, , it felt in the hospital that we were in, there were still some, doctors there that, like, we really, really trusted and had built a relationship, right? And a whole cadre of nurses that we had done this with you know- We had, , the baby whisperer nurse who would come in, and I'd only ever, , met her in person once, but I would come in, and, , Gemma wouldn't eat for anyone else, but she would eat for this nurse overnight, like, whole bottles and stuff. And Gemma has never, to this day, , never eaten like she did with that nurse then.

And- so, despite the fact that we really wanted the transfer, it was still heartbreaking in certain ways to leave. And it was- Mm-hmm ... really scary to go to another hospital that, like, we didn't... We hoped- Yes ... it was gonna be better, but, like, [00:25:00] we didn't- Yeah, 

Rhandyl: you don't ever- really know that ... necessarily know. Yeah. 

Alyssa: Right. 

Deonna: Yeah. It's like, is the grass greener on the other side? I don't know. Maybe. Well, and- Yeah ... I know what you're saying. Like, I'm sure y'all felt this way. Like, when I was leaving different hospitals, I felt loyalty to the nurses. The doctors- Yeah ... eh, not so much, but very loyal to nurses. And it was like- Yeah ... "Oh no, I'm leaving my girls and my guys- Yeah ... and now I'm going, and what if I don't like it?" But- yeah ... um, that was scary to me 

Rhandyl: So yes, I think we all can agree, - Mm-hmm ... seeking out higher level of care, if that is what is the best for your family, for your child and that there are ways that you can figure it out no matter the distance. Mm-hmm. It's possible. Um, you- it's possible. It's never easy. And it's not going to be perfect. Like we had- Mm-hmm ... crazy scares and mistakes that happened, 'cause like you said earlier, we're all human. Doctors are human, nurses are human. There were... It's not like everything was all, like [00:26:00] Deonna says, cupcakes and rainbows when we got to- Mm-hmm this, uh, major children's hospital, 'cause it was not. But it was- Yeah. Still yeah ... ultimately the best thing that we could have done for our child,

Deonna: , Another thing Erica said that I just wanna point out really fast, like when she was saying, you know, "I had to be strategic about my behavior- and, you know, things like that," and I've felt that way, too. I don't know if y'all have ever felt this way, and this sounds terrible, me saying it, but I'm gonna say it out loud. Like I, I knew that my child's care was directly linked to how much they liked me and how much- Yep ... they liked my husband. And so I would- Well, that's a real thing be very strategic about how I acted, and I would, you know, suck up to some of them 'cause I knew that they needed that, or I would, you know, pet some of their egos because I knew that's what worked for that one. I mean, I was becoming everyone to everyone so that- A million ... everyone would like me.

And that was the hardest part of the transfer is being like [00:27:00] We're gonna break all that now. I- Mm-hmm ... I don't care if you like me now, I have to do what's right for my kid. Yeah. And it was hard 'cause all that strategy and all that, you know, schmoozing went out the window, and- And then you gotta start all over again they were all upset with me. Yeah. And you have to completely relearn all-new people at the new place. I'm like, "Okay." Oh, yeah. But I mean- 

Rhandyl: I've said it, so many times I swear at these major children's hospitals, every week there's a new attending or a new fellow- Mm-hmm ... or something like that. Mm-hmm. And I think after quite a few months there, I know that my daughter's chart had, like, a sticky note or some sort of note on there, like, difficult caregiver. 'Cause I mean, they all would come in there- yeah ... in, on defense, you know? Yeah. I was there for every round, like, I'm not gonna miss it.

Deonna: I love that.

Rhandyl: Oh, yeah. , They didn't look forward to rounding on her every, every morning, but- 

Deonna: Anyway. Well, and I'm sure y'all feel the same, but if you ever are at a hospital and you're wanting to do a transfer, I'm sure you could reach out to either us at Raising Disabled or y'all at [00:28:00] Caffeinated Caregivers and be like, "This is how I'm feeling." We can all give advice on, like, how to say- Mm-hmm ... "Hey," in a, in a okay way, you know- Mm-hmm ... "I want to get outta here." Yeah. 

Alyssa: Yeah. You're allowed to ask 

Deonna: for it. It's usually something happens. Yeah. 

Erica: And even support in a care conference- And- ... you know? It- that's like- yeah ... I think we don't talk enough about the anxiety and the intensity of care conferences, where topics like a transfer could be discussed, and- Mm-hmm oftentimes they aren't. And I don't have a full scope understanding of why there's a barrier and why the ego comes into play or what financial things are happening to prevent a hospital from putting that option on a table. But- Mm-hmm ... you as a parent can always have that option on the table, and- yes ... and use that as leverage or use that as kind of the end point if the care conference doesn't go the way you feel it should go. [00:29:00] Yeah. If you're not feeling supported. Exactly. And so 

Deonna: No, that's great advice ... in, like, in Al- in Alyssa's situation, that should've been a simple phone call. They should've been like, "Hey, we... It might be this. You're down the road. Can you consult?" Yes. I mean, in my opinion, that is her life. That's her kid's life. They should be humble enough to just do that consult. Not even have to do the transfer, but they don't like to do things like that. It's a, it's a money thing, but- And this 

Rhandyl: happens all the time Well, and a lot of 

Erica: times just- All the time ...

Rhandyl: it does, especially with, especially- Yeah, the n- ... with neighboring hospitals. Like, we have- Mm-hmm Competitors ... in the town we live in, they're so competitive, and they almost will never, like- share ... they fight about- Oh ... like transferring a... the local-to-local situation is always harder. Um- 

Deonna: They won't even round sometimes. Like, if you're- Yeah ... at their competing hospital, they won't even come round at your- It's so silly and I'm just like, get over yourself." 

Erica: It's about putting the patient first. Or- Mm-hmm. Like, that feels like- No. No ... a direct- no ... [00:30:00] conflict of, like, the Hippocratic oath that they take as medical professionals. Yeah. Yeah. You know? 

Rhandyl: Do no harm. Yeah. 

Alyssa: And those hospitals that are, like, close together, like the one that we were at, you know, like, half the doctors in this NICU have worked at that other hospital at different- Yeah points too. So then, like, when we're adding in the layer of all of that, there's, , the administration, like, "Oh, are you- Mm-hmm ... you know, like, biased towards us or against..." You know, like, there's all these other things- It's so political ... that come at play. Yeah. It's so political, and it's just like, just get my kid the care that they need. Yes. Right? Like- Yeah ... just make the phone call. Like- Yes ... don't make this hard, right? Like, at the end of the day, you're putting little babies in a worse position- mm. Exactly ... by having to go around and do all of this.

And, You know, we talk a lot about, secondary medical trauma that, , we have to, like, watch things that our kids go through and whatever, and I'm like, but this one, this was my trauma. Like, getting Gemma- Yes ... transferred to the other hospital- Yeah ... was not a Gemma trauma. She didn't have to worry about that. I'm the one who, like- yeah ... stays up late at night, and I'm the one who has - trouble, , being in hospitals [00:31:00] physically now. Sure. Because, like, I have such a bad stress reaction sometimes.

Yeah. Oof. Oh, man. That, that one's me, and they, like- Yeah ... these are the things that don't have to happen. That's unnecessary. Right. We could have avoided- Mm-hmm ... all of that. 

Rhandyl: Exactly. Well, I- Yeah, we hope that everybody takes something from what we've said, and if you're in that- Yeah ... situation, , we gave you some hope that you have a voice.

And so to kind of- Yeah ... transition I would like you guys to in short summary, 'cause we're gonna tag you guys, Caffeinated Caregivers, in our show notes., But, just listening to some of your episodes and following you guys for so many years on social media it seems like you guys came to this similarly as Deonna and I meeting through our kids' disabilities and then, being on the same page and then wanting to have a voice for other caregivers.

And so I love following you guys and everything you share, but you guys also do a lot of research. So just, I would love to just y'all let our listeners know what you guys are about, how they can follow you, 

Erica: [00:32:00] Yeah. , So you know the crux of Caffeinated Caregivers, kind of its origin story is through similar conversations like this, only through copious amounts of voicemails back and forth. We love- Yeah ... our WhatsApp chat. I think- ... at the time it was Instagram, and I believe, just to kinda shorten our sweet little love story, we had a mutual friend- mm-hmm ... from Southern Illinois who got to know Alyssa, even though I never met her when she was here, , who when she learned about Gemma's rare disease, I think, contacted her, , to us. And we followed each other loosely. Yeah. I loved Alyssa's writing. I loved the way she was talking about her experience with Gemma. Alyssa's also a really talented illustrator, and so, we just- oh, wow ...

she had a vibe that really appealed to me, and we eventually just connected. And I think, like, the topic that really connected us was this challenge, About returning to our careers and the idea of wanting to return to have a job of some [00:33:00] sort to, and that, you know- Mm-hmm for me looked like I wanted to do professional advocacy. I wanted to support families. I wanted to get some things known that caregivers are talking about, but it's, it's often kept in these private chats, right?

And Alyssa just like talking about balancing a career and how that is so dependent on things like home health nursing, while home health nursing in our country is pretty underfunded and inconsistent and not exactly a stable- mm-hmm source of support for many families.

But, in talking, in, in kind of cultivating Caffeinated Caregivers we soon discovered that there were so many layers that we needed to kind of help educate our own community on simply the word caregiver and how, , that's an important distinction in policy and in the supports that we need in order for our children- Mm-hmm to thrive and to stay at home.

[00:34:00] Most specifically though, I think what connected us was this desire to do something online that, , really built community in a way that we personally hadn't seen- Mm-hmm ... happening already. Something that we felt we were missing. We .. had a lot of disability families online at that time, and maybe the stuff that was being shared didn't really reflect what we were experiencing.

There wasn't a lot of focus on the home health support. There wasn't much discussion about Medicaid and our unique dependency on it, and- Yeah ... so, in a nutshell it was like, let's create something that we wanna see that would've really benefited us. And- mm-hmm ... from there, that's kind of the seed that was planted, but the roots that have established and the beautiful whatever, fruit, vegetable, tree, shrub, whatever we are now that [00:35:00] has blossomed- flower, I don't know,

Alyssa: The onion ... it looks different- The onion that we are now. 

Erica: The onion. We often referenced the layers of caregiving that you have to, like, peel back. We joked a lot about, like, it's like an onion- Like Shrek ... you just constantly... Yeah.

So I'll let Alyssa take it from here, but that, that was kind of the seed, kind of the origin love story, the friendship origin, but also Caffeinated Caregivers, I think what I wanna share with people when they see our work now, it started in a group chat-, between two moms who were essentially- Mm just venting about a gap that they saw and that they were being impacted by and that they wanted to address.

But first we wanted to know, is anyone else experiencing this too? And if so, like- Ugh ... what can we do about it? Like, what are you doing about it? Mm. Bring this private conversation to the forefront in a way that would hopefully result in some sort of [00:36:00] change or normalcy.

Alyssa, I'll let you take it from here. 

Alyssa: Yeah. , Well, one aspect of the careers thing that came up was that, you know, like for you and I, we were both able to access in-home nursing, like home healthcare. Yeah. And it's so inaccessible for, many people. And even, you know- Mm ... what we have is, like incomplete, and it could definitely be better, you know, or more stable in our state and like with funding and all of that. But like- Mm ... at least we have access to it. And what is it that keeps so many other people from being able to access this at all, right? And then what are the ramifications for these families when they don't have access to that?

And- yeah, so, part of our, peeling back the onion was, like, we would try and go, like, look for these answers. Like, "Okay, is it just us? Like,, maybe we're weird, you know? Maybe we're the only people experiencing this."

And like Erica said, a lot of what we wanted to do was, , validate this or, uncover it as an issue broadly for caregivers. So it's something that we can explore if a lot of caregivers are dealing with this. Something that, we can hopefully give [00:37:00] common language to. The caregiver thing is one word that we definitely to this day still want people to have some comfort using, even if that's, , not a thing that you use in your daily life, right?

Because, like- Mm-hmm ... when you read policy or, you know, even, , insurance documents and they're talking about a child's caregiver, they're talking about you as a parent, right? Mm-hmm, mm-hmm. So, like, this is terminology that you have to have some comfort with.

But even, like, Medicaid, right? Like, early when we started talking about Medicaid, we would get people asking us, like, "Oh, you know, you're talking about Pennsylvania Medicaid, but, , I don't have access to that. Why don't I have access to that?" And then there was a lot of explaining of, like, "Well, it's different in every state." Mm-hmm ... and so there's just all these aspects- Yeah ... and it's a lot of information that is very, very hard to find in any centralized location. And even, like, what we have touched on is just really, like, scratching the surface, but- Mm-hmm it's something, right? It's, like, something to get us- No, I know ... like, grounded and moving in, certain parts of it,

so we also love storytelling. I think that's the one thing with Erica and I, we're like, we love [00:38:00] storytelling. We started out,, telling our own stories, , on social media- Mm-hmm and whatever. And so it's that's what we're doing right now. It's certainly not a thing that, we have any issues with. And we try and publish caregiver stories and - caregiver ally stories and stuff on our website.

But at the end of the day, Caffeinated Caregivers is not really about it telling any one particular story so much as it is just uncovering the caregiver experience for everyone. Yeah. 'Cause that was sort of, like, the gap that we saw. And that's a thing that we have tried to do and, you know, tried to incorporate as much from the entire community as we can. And it's always a thing that we're balancing and we're, , trying out new things, but it's been a fun- Yeah. I'll add that, like- A fun three years 

Erica: It has been a fun three years.

I'll add that, like, I do think that Alyssa and I, having been recipients of care as children and youth- And then becoming caregivers as adults. At the time when we started Caffeinated Caregivers, there was like some contention in communities [00:39:00] that caregivers should not have a voice, that their voice needed to be kind of relegated to one small area- Mm-hmm of the broader- Yes ... conversation about disability rights. I agree. Mm-hmm. And, and a different version of me, pre-mother, pre-caregiver, probably would've agreed with that, truly. Like- mm-hmm ... 

I had a different opinion on the role of my mother and her involvement in the way that she shared my story before I became a caregiver and then learned like how intrinsically intertwined our experiences are, and like before I- Mm-hmm fully understood what she went through to get me access and support. And so it took becoming a caregiver to be able to recognize there is a different set of needs and supports that are required for caregiving versus parenting. And caregivers really do have a place [00:40:00] in this conversation to shape that support to give our kids the very best outcome and opportunities in life.

, And that's another kind of piece at Caffeinated Caregivers that, we hope to do gently, but we also hope that we're doing it in a way that helps caregivers feel empowered with their own voices in spaces like advocacy, whether that be big A advocacy or little A advocacy. 

Alyssa: We need as many people doing the advocacy as we can, , we don't wanna make this pot smaller. It needs to be expanding- Yeah ... to as many people as we can get. Yeah. 

Deonna: Yeah. Yeah. Well, y'all, y'all do have such a unique perspective having different levels of disability growing up and now seeing what that was like on your mom and dad or whatever.

I mean, it's a very different perspective that you guys have that I love, and so, I love y'all's memes. Your memes are hilarious. I'm always- The meme queen over here ... every time I see one, I'm like, "Okay, scroll through. Let's see, like, all the things." Yes. And it's always like- The best ... yes, yes. Mm-hmm. [00:41:00] I'm like, "Oh my gosh."

Rhandyl: Don't you... Yeah. Love it. 

Deonna: But we really appreciate you both coming on today and talking to us. We had this whole list of things we were gonna talk about and questions, and then, you know, this turned into a hospital transfer, , episode, which I think is great because that's just part of this life that we lead.

Alyssa: One thing about Erica and I is that we'll be chatty. That's for sure. Yeah. Oh, and that's what 

Rhandyl: I was gonna say. We could all four probably sit and talk if we had the time, you know. And we should someday. Uh, all day. All day. Yes. We really should. I know. Um, over some coffee. But anyway,- I really appreciate you guys coming on and talking with us, and we look forward to seeing what you guys have in store for the future, and we appreciate you guys so much.

Alyssa: Thank you for having us. Yeah, thank you so much for having us. We, we're so happy to be here. This was, like, really cathartic. Yes. Every time I talk about hospital transfers, it is a very cathartic experience for me, so I appreciate you giving us the space for that. 

Rhandyl: [00:42:00] Yeah. Well, hopefully you don't have PTSD for the next few weeks- Yeah, no, I'm like- after talking about it. 

Deonna: I can share my actual thoughts on that without y'all thinking I'm crazy. If I tell anybody else that story outside of this world, they're like, "What did you do?" I'm like, "I know, it was weird," but y- y'all get it. 

Erica: Not here. That's the point of this. Not in this space. Well, thank you, all. Absolutely. All right. Have a good day. Thank y'all. Cheers. 

**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.