We’re back and ready to dive into the community complaint department! In this episode, we catch you up on our six-month hiatus (spoiler: it’s been a mix of zero-fun medical stuff and a few bright moments).
Erica’s disappointed with Alyssa’s coffee fail, but we’re making up for it with real talk about the challenges caregivers face, from feeling unprepared when heading home to navigating medical machines and interventions. Plus, we’re sharing an exciting research opportunity for caregivers who want to make an impact.
Tune in for relatable rants, practical tips, and a call to action for caregivers to support each other and help close the gaps!
In this episode:
[00:00:00] Intro
[00:00:45] Erica expresses her disappointment with Alyssa (she didn’t bring coffee)
[00:02:30] Alyssa and Erica address the elephant in the room: where we’ve been for the last six months
[00:09:45] How Alyssa found out that there’s a complex care team available at her daughter’s hospital
[00:15:42] An exciting research opportunity for caregivers who have the bandwidth to share their experience
[00:19:53] How shockingly unprepared most caregivers feel when going home for the first time and why we aren’t given information we often need
[00:27:57] When it’s too much information and when it might not be enough
[00:34:27] Why we need beeter conversations on medical machines and interventions before going home
[00:40:58] Why you NEED to do that sleep study inpatient
[00:47:45] How caregivers could support each other in these situations
[00:51:00] What you can do to address some of these gaps!
Links:
Apply for the SafeCare@Home4Kids research study: https://bit.ly/SafeCareStudy
Follow us on Instagram for research, validation, and a lot of memes @caffeinated_caregivers.
And if you have a sec, leave us a rating and review on Apple or Spotify! Thanks friends! Talk soon!
Finally get the support you need as a caregiver, right in your inbox:
Transcript:
[00:00:00] Alyssa: Usually we have a drink or something to chit chat with. I didn’t bring anything today.
[00:00:05] Erica: Alyssa, I am disappointed. I am going to write you up for that infraction.
[00:00:22] Welcome back, everyone. You’re listening to Caffeinated Caregivers, where we have coffee dates and conversations about all things related to caregiving. Alyssa, happy new year.
[00:00:35] Alyssa: Hi, Erica.
[00:00:37] Erica: Oh my gosh, it’s been such a long time since we’ve done this. It’s wild.
[00:00:42] Alyssa: It’s been a minute. It’s been a minute. What do you have, Erika?
[00:00:45] I have coffee, of course. Oh, you have actual coffee. Caffeinated
[00:00:48] Erica: caregivers.
[00:00:49] Alyssa: I had coffee at like 6 a. m. though. That was four and a half hours ago already. I had coffee at 6 a. m.
[00:00:55] Erica: too.
[00:00:58] Alyssa: Okay, in my defense Listen, I
[00:00:59] Erica: don’t [00:01:00] recommend my lifestyle choices, okay? I don’t recommend them. So I’m actually going to give you a pass on this one because you are making the healthier decision here.
[00:01:09] Alyssa: Also, in my defense, I have a coffee date later. With an IRL friend, so I was trying to save, I only have so much caffeine that I can ingest before it, like, makes my whole body feel weird, so. That makes sense. I had to save it for that.
[00:01:28] Erica: This is only my second cup, and I have been drinking it very slowly because I, I do enjoy having coffee throughout.
[00:01:35] the morning, like the whole morning. But like you said, I cannot have more than two cups, so I just have had to learn how to ration my sips and really savor the two cup allotment. It’s also, I’m an hour behind here, so.
[00:01:52] Alyssa: That’s true. It’s only 9 30 where you are. Yeah. Also, I like to do that, savoring my coffee throughout my morning.
[00:01:59] But my [00:02:00] brother in law is a dentist and he’s like, you know, that’s horrible for your teeth, right? And I already have bad teeth, very like sensitive baby weak teeth. So I’m like, Oh, I can’t afford to like add coffee over like four hours in the morning to it. So I’m trying to be conscious of that.
[00:02:16] Erica: Can we even have anything we enjoy without like eventually learning that it’s horrible for us?
[00:02:23] Alyssa: Basically, no. Okay, back to, back to the topic at hand. Erika, what have the last few months been like for you?
[00:02:30] Erica: Alyssa, we have not done this kind of meeting, a recording and a publishing of an episode since this summer. And it feels It feels a little foreign to come back to the mic and have a convo like we’re just meeting again when the reality is we have been in close contact this entire time, quite literally leaning on each other for support because the last few months have been rough [00:03:00] for us.
[00:03:02] But there have been some glimmers in these rough months. So I would like to maybe share about that because we started this project with the caveat of like, at the end of the day, we are caregivers and our families and our kids, they come first. The podcast and the social media platforms, those come last.
[00:03:23] And what’s been really exciting to see, I know for me at least, is when we came back, when we’ve had the time to revisit things. Everyone has returned. Everyone has showed up and kind of been there all along and that’s been really refreshing to see, but we have not had the spoons. You especially have not had the spoons.
[00:03:41] I feel like we got to meet in real life and then everything went downhill from there. Let’s talk about it.
[00:03:49] Alyssa: Yeah, I mean there were glimmers like there’s always glimmers. I don’t want to discount the glimmers. I think like I’m not like a terribly like a negative nihilistic [00:04:00] person by nature, but I also don’t want to undersell that like 2024 broadly like sucked really bad.
[00:04:08] You know, it wasn’t the last few months have been like particularly tough, but I was also like recounting with my husband recently like we. Hi, Gemma. Good. Are you good now? We don’t have a nurse today, obviously. I was recounting with my husband just the year, and it started literally like, I think, I can’t remember if it was December 31st, 2023, or January 1st, 2024.
[00:04:33] But anyway, it started with me flying to where my mom was raised for a funeral for, like, my last surviving aunt. Well, she’s not surviving anymore on that side of the family and that really like set the tone for pretty much the rest of the year. Like we lost our dog, we lost like multiple family members, my grandmother, and that was just before summer.
[00:04:58] And [00:05:00] prior to that, we were doing a whole bunch of like seizure management stuff that like wasn’t working with Gemma. We made some changes in the summer. It made a big difference to her seizures and then it screwed everything else up pretty bad. So after that, we spent literally the rest of the year until maybe like early December playing like whack a mole with all kinds of random stuff.
[00:05:24] Like we did a trial of a study that landed us in the ER. So obviously we didn’t continue with that study. We did all kinds of stuff for like trying to like get reflux under control that was exacerbated by the like new epilepsy meds. She was on. We had a whole bunch of respiratory issues. She and I both got, we’re not sure what we got, uh, some sort of set of like tandem respiratory illnesses that we had from like the beginning of October until at least after Thanksgiving.
[00:05:58] Like I had bronchitis. Part [00:06:00] of the reason we didn’t record is because, like, I literally put nuts out coughing. I had no voice. I lost my voice two or three different times, but, like, from the beginning of October until after Thanksgiving, I didn’t go more than, like, five or ten minutes without coughing. It was driving my family nuts.
[00:06:17] I had to get, like, all kinds of, like, steroids and stuff to, like, get my cough to go away because my chest and bronchial tubes and lungs were so inflamed that, like, That was the whole thing. And uh, then December was like pretty chill. So like we, we had like one good month out of all of it, but it was a year.
[00:06:38] It was a year. I am not sad to put 2024 behind us. And again, I’m not saying that there weren’t good things. There were like some really great things that happened. We filed for non profit status. We got all of that set up. We got to go to our conference and give our first major presentation, two of our first major presentations, one in person, one virtual.
[00:06:56] And we got to meet in person and do all of that. And that was all [00:07:00] great. And the rest of the year was not great. So there you go.
[00:07:04] Erica: Yeah, it’s been rough. I mean, when I think about the past year, it’s like the word that would come out to mine is just sleepless. It’s been such a sleep deprived year for me and I am having to revisit some things that started exactly a year ago that are really blowing my mind that I like managed to keep up with and stay on top of for the last year.
[00:07:34] I was like reading back to MyChart messages with our team. detailing how like I’m only getting three hours of sleep a night and that is only recently improved. And the improvement was, you know, in part to a difficult decision of adding another heavy hitting seizure medication. And then there was like the weight this year of [00:08:00] thinking this whole time that my kids just aren’t, you know, they just aren’t sleeping well.
[00:08:04] And then come to find out it’s seizures that I was completely. unaware of. And you think like by now my children are eight and six, you think like I would know. And so there’s a little part of me that’s like, oh, but you never know. You never really know. But looking back on how like we hobbled our way through this past year, I am really proud of us for having accomplished what we have.
[00:08:28] And the highlight of that for me personally was being able to. not only go to this conference and meet you in person and another friend and caregiver that we got to hang out with the whole time is Aria. Shout out to Miss Aria. It was also just being able to meet your family and I got to stay like 24 hours in your home.
[00:08:50] You got to come to our house.
[00:08:51] Alyssa: I forgot. I mean, I didn’t forget about that, but I wrapped it all together. Yeah.
[00:08:55] Erica: I got to have Sam’s famous sour bread pizza, and [00:09:00] I got to hold and hang out with Gemma, who I feel like we just got along right away, which I was fully prepared for that not to be the case because Gemma’s like my Margo, but I think she sensed that I was used to those vibes, I feel like so.
[00:09:14] Alyssa: She can be withholding when she wants to. Yeah. But
[00:09:18] Erica: it was just so special and to see Harry and his friends and your neighborhood and then to be in your home. I got to make that visit during a time that you guys were like really still figuring some things out for Gemma’s health and I felt like it was just eye opening to see across different states what some people have and what others don’t have despite our kids virtually being identical in there.
[00:09:45] like symptoms and the kind of care and support that they need. And I mean, one of those big things was like, we were at this conference and you learned about a complex care team. And I was like, you don’t have a complex care [00:10:00] team. Okay. You’re like, no.
[00:10:02] Alyssa: Building this out. Wild. It’s the complex care team at the hospital that Gemma already does basically all of her care at and I only found out about this complex care team because we were at a conference and they had a poster and I literally I felt kind of bad because they definitely like dropped it on her but it was like really shocking to me I was like why do I not know about this and she was like what yeah and fun fact they knew about caffeinated caregivers oh yeah they knew about us But I didn’t know about them.
[00:10:31] They knew about us, but Alyssa didn’t even know about them. I had no idea. And honestly, like, that’s egregious for a few reasons. Also, not blaming the Complex Care team for this at all. The reason we’re not attached to them is because you need a referral to go to them. And of the, like, seven different specialties, and not a single one of her doctors in there was like, Oh, do you know what?
[00:10:55] You guys could use Complex Care. Never. ever came up. [00:11:00]
[00:11:00] Erica: So wrong. So, but you know, like, I’m also really proud of us because in all of this, we were able to keep our kids out of the hospital too, which is. Shocking, considering like where you guys were at with Gemma and going into your home and seeing Gemma’s status.
[00:11:20] It was like a flashback to when Karatekis was in that same place. And we were visiting the hospital routinely. So It was amazing to see you guys be able to sustain her health and everything from home. It’s wild to say that we are excited that we didn’t have to go to the hospital when they’re sick, but like, this is what home health should be, right?
[00:11:42] Like, we should be able to have all the things we need at home so we don’t have to make an unnecessary trip to the hospital.
[00:11:48] Alyssa: Yeah, that always brings up a lot of really complicated stuff. The tricky thing with her is like she’s got a lot of weird respiratory things, but she can keep her SATs up. So [00:12:00] It makes it so that, like, any of her teams and specialists and, like, emergency people, all of that, are, like, really hesitant to, like, do anything outside of pulmonology.
[00:12:10] Like, they’ve been more helpful. But I feel like it shouldn’t be this hard for her to breathe for two straight months, even though she can keep her stats. You know what I mean? Like, it’s just a lot of really tricky stuff like that. Also, you did recommend a whole bunch of stuff that we did eventually get from pulmonology, right?
[00:12:25] We already had a suction machine, but we got, like, shaky vest and she got a CPAP. She got all this stuff. It’s worth noting that like I still had to like go to the doctor and take my list of stuff and are like this is all the stuff that we want for her. It wasn’t someone on her medical team that was like, oh you guys would really benefit from this because she sounds like this or because you know she’s phlegmy a lot and this will help her get stuff up more or those sorts of things like we still had to go and do all the work to like ask for all that stuff.
[00:12:53] There’s all these things! We’re going to get into it, but you don’t know that like you’re [00:13:00] going to be either I have like a bad care team, or is this just like what care is like everywhere. And given the questions that we’ve been asking lately to you guys, it seems like our experience Bye. Or at least my experience isn’t actually that unique.
[00:13:15] Erica: No, it matches what a lot of people have been saying. And to lead us into that, we recently asked our friends and caregivers over at caffeinated caregivers on Instagram. We asked everyone about their experience in going home from the hospital, like after their child’s, whether it was a NICU stay or initial diagnosis, just kind of that moment you became a caregiver and you were having that transition from learning as much as you could about your child and their uh, needs, their medical needs specifically.
[00:13:55] and doing that transition from the hospital to home. And [00:14:00] our friends had a lot to say, Alyssa. It very much mirrored your experience, my first experience. I mean, a great example to kind of summarize all this is Gemma is five, right?
[00:14:15] Alyssa: Five and a half. She’ll, she’ll be six in March. And you just started seeing pulmonology this year.
[00:14:21] Yes. In 2024.
[00:14:23] Erica: That is. insane to me when you look at our children and their kind of constellation of diagnoses and care needs and all the things we need to do from a respiratory standpoint to support them. You would think there would have been like some follow up from day one, but that doesn’t always happen.
[00:14:44] And it’s not just you. It’s not just me. We heard from so many people when we asked about this. And there was like this cognitive dissonance for me where I was like, okay, I’m comforted to see that I’m not the only one. [00:15:00] Like there was a weird comfort about like knowing that like, this isn’t just me. Like very few people had a super great experience transitioning from hospital to home.
[00:15:11] But then also I just kind of became a little enraged because. It shouldn’t be that way. Before we dig into that, though, because we’re going to dig into that. We’re going to share responses that we got from the community. We’re going to talk about it. I think it’s important to introduce really not only how our life experiences have led us to having this conversation at this moment, but also this really exciting partnership that we have at the moment that has inspired us to have this conversation.
[00:15:42] Alyssa: Let me give just like a little preamble. Erika and I, talked about this right before we got on here. But like, every time we bring up topics like, this is not right. And like, it should be better. There’s always a cohort of people. And I understand this, first of all, because [00:16:00] I can definitely give into this at certain points, but there’s always a cohort of people who are like, well, sometimes I just wonder if like, this is just how it is.
[00:16:08] It’s going to be hard to like, make things change and you know, whatever. And that, first of all, But at least that second part is true. It is hard to change things. Systems move very slowly. Change doesn’t happen quickly, and it doesn’t happen without some jostling and some like, prodding from us.
[00:16:28] Erica: The bureaucratic red tape is insane.
[00:16:30] Yeah, it’s
[00:16:31] Alyssa: a nightmare. Yeah. However, it will never happen if there’s not someone trying to push it along. And I’m not saying that every person listening to this right now has to be the person to do that. Like, If you want to know whether or not you’re prepared for that, we have a whole thing called the Caregiver Continuum.
[00:16:49] It pretty much explains where you are in your caregiver journey, what the likelihood is that you’ll be able to, like, engage in, like, this kind of advocacy or research or whatever. Like, if you’re sitting there going, like, [00:17:00] I can’t do that right now, read all of our stuff on the Caregiver Continuum because I get it.
[00:17:04] But if you’re at a place where, like, You feel like you can offer some of your energy to like move some of these systems along. This is what we’re going to tell you about right now. And this is like the kind of work that will hopefully eventually make a big difference for people transitioning home. Yes, this project isn’t specifically about the home transition, but it is about the equipment that we have in our house and like learning how to use it better.
[00:17:30] Helping families to like use it more safely, like having more options, more training, more whatever. I don’t, you know, it’s hard to say exactly like what the outcome of this research study will be, but the core of it is basically we’re working with a program called Safe Care at Home for Kids. That’s all one word.
[00:17:47] And it’s a partnership with Worry Children’s in Chicago and Northwestern University. The short version is it’s a week long survey of like what equipment you have in your home and like how you use [00:18:00] it, right, and medications. Yeah. So they’re just kind of trying to like collect information about like what that looks like, how you track it, how you know that like you’re giving the right stuff at the right time, how you know how to like troubleshoot equipment, all those sorts of things that like might come up within a week.
[00:18:14] They just want information on it. And then the idea, this is not from them, this is from me, I think long term is to figure out like Is there a safer, better, more structured way, more supportive way that organizations can help parents and caregivers and families and all of that do this in the future? So we’re going to have more information about it.
[00:18:34] We’ll talk like more in depth about it at the end of this podcast. But if you would like to join that study, go find our notes below. Also you get paid for it.
[00:18:43] Erica: Yeah. This project that we’re excited to help recruit for. Just really came at the perfect time because you and I were coming out of a really intense year doing a lot of reflection on things we wish had been better, things we wish we had easier access to, [00:19:00] and we noticed a lot of That kind of a lot of people were experiencing that.
[00:19:06] Maybe that’s like what the turn of the new year does to caregivers. It kind of, I don’t know, forces us to sit and reflect about like all the things that we’ve been through and just how fast it goes too, right? Like it feels like things move so slowly in our lives and yet a year can go by so quickly. So yeah, we asked our audience about specifically the things, well, first of all, I think it was pretty revealing when we asked people in our stories how prepared they were to come home from the hospital.
[00:19:41] Just that moment that you really start your journey of care. from the home primarily and not as like an inpatient family patient caregiver situation. So
[00:19:53] Alyssa: come home from the hospital like that first time, whatever that first time was for you, [00:20:00] right? So like for you and me, it was the NICU, but that’s not the case for everybody.
[00:20:05] Erica: Yeah, I think what was really shocking to me on this one was just how many people did not feel confident. There was only 6 percent of people who responded that they felt pretty confident going out. Not even very confident, but like pretty confident. By and large, the majority of people did not feel prepared at all.
[00:20:29] or felt okay, but we’re still like super nervous, which totally understandable. It’s hard to say that that nervousness ever really goes away. But I think what was shocking to me is that I think hospital systems and medical teams might not realize how few people leave their establishment feeling super confident and empowered to do this all on their own.
[00:20:55] I realize that can differ based on the type [00:21:00] of needs and medical interventions that are required of a child at home. For example, just from experience, a tracheotomy, an event, it’s going to be a lot harder and a lot scarier. And the stakes are so much higher than a G tube, but they’re still scary. Like both are still a huge responsibility that most caregivers go home with very little support for.
[00:21:24] So let’s talk about that because one thing you and I shared privately. was that we saw this pattern of people who did go home feeling confident, empowered. They were actually the ones whose kids had the more severe medical needs and required the most support. They described getting a lot of training and a lot of one on one and, and in some cases, even going to a facility that like helped them in that transition, like gave them chances to do the [00:22:00] caregiving without a nurse by their side.
[00:22:02] So they actually got a feel of what it was going to be like at home so that they could start preparing themselves and their home. And that was definitely not the case for you or me. So to see that was pretty eye opening. Obviously, those families need and deserve as much training as they can get. But it was not lost on me that families who are going home with kids with less medical equipment, but still pretty high and severe medical needs, such as like, pretty significant seizure disorders.
[00:22:35] They were going home feeling wholly unprepared and virtually unsupported. And that, that was hard. That was hard to see. That was my experience. That was your experience. Again, it was one of those things where I was like, well, I guess maybe it’s happening to all of us, but that’s not great. That’s not a good sign.
[00:22:55] Alyssa: Yeah, I think for both of us to like, we, you know, we just got done talking about how [00:23:00] like really what the trend was, was like, if your child went home with like a trike vent, there was like a ton of support, right? I think a lot of that is just because of like hospital liability issues. Oh, yeah. They’re literally not allowed to send children home without like a certain amount of training.
[00:23:17] But then like the drop off from that is really sharp. Right. Because like a G tube qualifies you for a good amount of like support, but only if you know about it to ask, they don’t necessarily set you up with any of that at the hospital. They’re just like, here’s your G tube. This is what you do for it.
[00:23:38] Okay. Now you can feed your baby. Easy. Bye. And
[00:23:40] Erica: not very steep by state too. Like,
[00:23:43] Alyssa: yeah. In our case, like Gemma’s team was like so desperate to like get her to eat. They were like, she really needs to learn how to eat before she goes home. So like we figured out how to get her to eat like enough to go home.
[00:23:58] And then she struggled with eating for like two [00:24:00] straight years. I’m like, we could have left Nikki with a G tube and we would have probably been way farther along than we are now, but it is what it is, right? Like you get all these like weird pressures that come up in certain places. And the other thing too, is I’m bringing this up because when we asked for like, what things do you wish that doctors, hospitals, medical teams, whatever had told you, like leaving the hospital.
[00:24:21] This one really like hits home with me because Gemma didn’t get diagnosed officially with a seizure disorder in the hospital, but she did get at least a couple of EEGs, but guess how much we talked about infantile spasms or epilepsy disorders in the NICU?
[00:24:39] Erica: Zero. You guys can’t see this, but I’m holding up a big zero.
[00:24:43] Alyssa: Almost none. And I bring that up because we had at least four or five different people who were like, I wish people had told me. what infantile spasms looked like, what I should be looking for when I left the hospital with my child. We had one mom that was like, I wish they had told me your [00:25:00] child is going to have seizures and this is what you should look for.
[00:25:03] Erica: Yeah.
[00:25:03] Alyssa: And that one really hit home because I feel very similarly. We didn’t have anyone sit down with us and be like, okay, this is the kind of stuff that you might want to look for. We never had that.
[00:25:15] Erica: Now, I mean, I get that, but also the other side of that as a parent whose child was seizing in the NICU, I mean, it still felt like we didn’t get, we didn’t get set up well to manage shit.
[00:25:31] that from home. For example, I want to share this one message we got from a follower, Caitlin Castro. She sent us a message that just really hit home and it was about having the lack of monitors at home or even just not having windows of time in the NICU where you as a caregiver are trained to identify concerning or problematic.
[00:25:58] Behavior or [00:26:00] symptoms of your child without the monitor. She explained it so well. She was like, they say they’re in, you know, they have to be on these monitors 24 hours while they’re in the hospital and every time an alarm so many people come running in, but then the day or discharge. Everything comes off and they’re just like, bye, see you later, have fun.
[00:26:19] And I did go home with a monitor, but still monitoring at home is so different. Like we were used to people running in and checking on Margo anytime she alarmed.
[00:26:30] Alyssa: I can’t remember for you guys, did Margo have any surgeries before she went home from the NICU that first time? No surgeries at all. No, no surgeries.
[00:26:39] Okay. Feasibly you guys maybe like had time to sort of like figure out what her vital signs meant, what like her baseline meant, right? But did you guys actually have any conversations about that in the NICU at all? Really with like her medical team?
[00:26:53] Erica: This is a story probably for another time that’s related to reasons I [00:27:00] should have pushed harder for a g tube.
[00:27:03] Yeah, I mean we had lots of vital sign instability related to my child Eden. We’re seizing and things in hindsight should have been done very differently, but hindsight’s 2020 and yeah, we’ll have to save that conversation for another time because it’s a story.
[00:27:22] Alyssa: Okay, I bring that up because we had a couple people who were like, you know, we paid really close attention to do like this stuff and that stuff and like try and figure out her baseline in the hospital.
[00:27:33] But that’s assuming you even get like, quote unquote, like normal period to do that. So we didn’t like she was never not recovering from surgery from like eight days old to going home. Oh, so. Yeah. So. Even in our case, though, we did not have baseline conversations. We didn’t have like, this is what you should expect, this is what, you know, relatively healthy Gemma looks like, this is what not healthy Gemma looks like.
[00:27:57] Erica: Yeah, but also then like, okay, [00:28:00] so how do you track symptoms? As a mom who watched her baby seize the moment she was born, have hundreds of seizures a day, and like slowly over time with the combination of the right meds, we saw those minimize pretty drastically. I was still taught to document every seizure, like even at the bedside, they would ask, what did her seizures look like?
[00:28:24] How many seizures did she have today? And so often those conversations were to help us determine if we needed to like adjust meds and I never stopped doing that. Like I went home with At the time, a notebook that I then turned into, I’m sure, an Excel spreadsheet or Google Sheet and then I found an app and I was obsessed with documenting these seizures because that’s what I was trained to do in the hospital.
[00:28:52] Nobody warned me how bad that could be for my mental health. No doctor sat down and said, you know what? Your child’s [00:29:00] having a hundred seizures a day. Why don’t you only track the ones that are like really noticeably different? If you see a significant increase, then we need to document that. Don’t plague yourself with documenting every single seizure or else, well, as it turns out, you don’t get any sleep and you’re constantly on high alert and that is no way to live.
[00:29:22] I learned over that first year through many outpatient appointments that I didn’t have to do that. But it was not something that I went home with the knowledge of and that could have really helped me and my mental health to understand that that just wasn’t required of me. But I will say I think a part of me did that as default because I felt while in the hospital.
[00:29:45] nobody else was paying as close of attention as I was to those events, you know, so I, I had to, I had to be, that was my job in the hospital, which, you know, as a, as a mom in the NICU, you want to have a job. You want to feel like you are [00:30:00] doing something for your child, because it is unnatural to have your child become suddenly dependent on others and not just you right after birth.
[00:30:10] So that was wild. And we had a lot of people talk about that, like just how to doc, how to track symptoms, how to document them, but also like when to stop, when to stop obsessing over that stuff.
[00:30:25] Alyssa: Yeah. I mean, I won’t dig into the whole thing because your story sums it up, but like we had a very similar experience, particularly when it first became like very obvious that she was having seizures.
[00:30:35] It was still two or three appointments until one doctor was actually, he’s like, as long as she’s still having them a day and she’s not having them all day and like, you feel like she needs to be hospitalized. We’re not tracking them here either. To be fair. I don’t know if I could have heard that when she was first having them, but also I feel like, you know, they could have said like a little bit earlier.
[00:30:57] They could have planted
[00:30:58] Erica: a seed. [00:31:00] Yeah.
[00:31:00] Alyssa: Right. Yeah. Like you don’t have to sit here. Also,
[00:31:07] Erica: they still ask us at every outpatient neurology appointment, uh, when was their last seizure? And so it does feel like you have to.
[00:31:15] Alyssa: Yeah.
[00:31:16] Erica: I answer that question now very differently from how I used to. And that seems fine.
[00:31:22] I remember like taking videos and at the beginning they would ask for those things. And so you felt the responsibility to them to do that. I think that they were important for a time, but after a while, after you get to know your kid and their seizures and what it looks like, you know, I think what a doctor or a social worker, someone could have sat down with me and said, is someday you’re going to feel confident about.
[00:31:47] what you know with your child and you will know when a seizure looks different and we will trust you when you say my child is having an increase in this or it looks different and I’m concerned and that would have made me feel [00:32:00] I think better and I think I would have managed things very differently had I had that information.
[00:32:05] in advance. That’s eventually what it turns out to be. You get a partnership with your team and you know, you’re able to say with confidence that things are a certain way or they aren’t and your team tends to trust you.
[00:32:18] Alyssa: Yeah.
[00:32:18] Erica: That’s all about that partnership and trust. So, you know, kind of to circle back a little bit though, on top of people like saying they wish they knew what the emergencies would look like and how to triage them.
[00:32:32] They wish they knew, like, they had training on lung sounds, had a stethoscope at home, knew, like, what to expect with respiratory issues, uh, the first cold of a medically complex child. That is a huge deal. Nobody prepared me for that. Nobody prepared me for how fast A cold would take my kids down like that.
[00:32:54] I wish I had better information on from the get go.
[00:32:57] Alyssa: Yeah. On that note, somebody [00:33:00] said atypical anaphylaxis, which like, yeah. Oh yeah. Anaphylaxis does look different for our kids sometimes and also just for babies in general. Right. But like, You don’t necessarily get a lot of discussion about that ahead of time.
[00:33:14] Some of these others, I’m just gonna, I’m gonna read through and then you stop me, Erika, if you’ve got comments on this. Cause some of these are just like, I feel like they’re wrapped into a lot of these things that we’ve talked about. First of all, that, again, coming back to both your note and mine about machines and interventions or whatever, that they’re not necessarily a bad thing.
[00:33:34] It’s not like some failure of your child or you or whatever that like, there’s nothing innately bad about any of those things. And actually they could hugely improve. both your life and your child’s life. And it’s weird, maybe not weird for all kids, but it’s weird in cases like ours where there was no secret about the fact that like we had medically complex babies like as [00:34:00] soon as they were born, right?
[00:34:01] Like that was very clear from the beginning that we still somehow get like, discourage from some of these interventions that like the medical team has seen children somewhat present like ours come through before and benefit from these sort of interventions. And yet we’re still not, there’s a lot of, I think even stigma, like in the NICU about like jumping to some of this too soon.
[00:34:22] I mean, for both of us, both of our kids should have left the NICU the first time with a Juju.
[00:34:27] Erica: Yes. And you know, I think the other piece of that is A lot of times these machines or interventions are not just good for the children, they’re also good for the caregivers. I think about feeding differently at night and how little sleep we got the first several years because the schedule we were told to follow in feeding our child and the pressure we felt of keeping that up and, and it’s at someone told us.
[00:34:53] Hey, a G tube would A, help your daughter from struggling and aspirating and therefore not getting sick [00:35:00] and hospitalized with pneumonia, but also you could literally set her up at night to feed and save yourself some money. stress and exhaustion of trying to force her to feed by mouth, something that she was not really strong enough to do.
[00:35:18] Alyssa: When she’s tired too, like, she also gets to sleep.
[00:35:22] Erica: Or even these meds that literally taste worse than I’m sure a shot of whiskey does. Yeah. They could put them in a tube. Right. What baby wants to eat phenobarb with breast milk, okay?
[00:35:34] Alyssa: No wonder she was
[00:35:35] Erica: struggling and choking. A feeding tube would at least give you this option for meds.
[00:35:42] And also, you know, when they get a little sedated from all those meds, it would give you a really safe option to continue feeding. But not only that, in some states, you know, the simple fact of having a feeding pump and then maybe feeding. Continuously overnight, that actually could open the [00:36:00] door to nursing support for many families.
[00:36:02] I mean, just on top of getting rest because your child is hopefully sleeping comfortably and still getting nutrition, to have that knowledge of like, or connection between here’s the intervention, but here’s also the support that would come with that intervention. I think it would have been a really soft cushion to provide when having those conversations with us, you know, I think it would have been really helpful.
[00:36:25] Alyssa: Yeah, the other part of my brain is like, okay, I hear the medical providers be like, yeah, but we don’t want to do interventions on babies that don’t need it. First of all, same. I understand, right? Like I don’t want babies to have unnecessary interventions either. I don’t think tiny babies are getting G tubes that don’t need them.
[00:36:41] Erica: Well, also a G tube is reversible and I am proof of that, you know, had one for five years and don’t have it anymore.
[00:36:50] Alyssa: That’s part of the thing, right? Because they tell you, like, oh, they really need to learn how to eat. It’s so hard to get kids to eat if they’re not, if they don’t learn early on. [00:37:00] Maybe we’ll have an SLP on again someday to, like, discuss this.
[00:37:04] Erica: I know just
[00:37:04] Alyssa: the one. I know just the one, too. Hey, Tova. But I actually don’t know how true that is, right? Because, first of all, a lot of times, this is coming up for kids who are already, like, really struggling to eat. Like, it’s not like they’re good at eating and now we’re giving them a G tube and now they won’t know how to eat anymore.
[00:37:21] It’s like, well, they already didn’t know how to eat. That’s why we’re in this position in the first place. And second, to your point, sometimes, taking the pressure off of that, even if your child can partially eat by mouth, it gives them the opportunity to develop that skill under like a much less intense environment, right?
[00:37:38] So like they can eventually transition out of that G tube into like feeding by mouth all the time anyway. So it’s not even one of those things where it’s like, oh, they got the G tube and now they’re just like, that’s it forever. That’s not true. That’s not true. And I know we’re off topic, but like, that’s one that always gets me.
[00:37:56] It always gets me because it was framed so [00:38:00] intensely like that when we were in the NICU and it’s just not accurate.
[00:38:04] Erica: I mean, I had one doctor making me cry and telling me that I will never see my daughter’s smile because of her severe neurologic impairment. And then I had another doctor telling me if you don’t feed her by mouth, she’s going to lose this neural pathway and the opportunity to build strength in that area.
[00:38:22] So you have to feed her by mouth. Good will ruin all of that. Yes, that happened in the same hospital with the same medical team, two different doctors.
[00:38:32] Alyssa: Okay. On that note, I want to like bring this up really quick because we would have doctors like come in and like say that and sort of like imply that.
[00:38:40] And then we would always have this one nurse and like, I didn’t understand what she was telling me then. But now looking back, I’m like, Oh, Amy, or maybe I shouldn’t say her name. I was like, Oh, I wish I had like taken that to heart just a little bit more. Cause she’d pop in and she’d be like, I know they’re telling you that, like, your kid can’t go home until she learns how to eat, but she’s like [00:39:00] Babies go home on NG tubes.
[00:39:02] Wink wink and whatever. And back then it was like, no, no, she can’t. It will be terrible and awful and we won’t be able to manage it and all this wet and whatever. And now I’m like, oh man, I should have really listened to her. Thank you,
[00:39:13] Erica: Amy. We had some Stephanie’s. There’s something about the name Stephanie in my life that I need to look up.
[00:39:19] We have a good, we have a good team of Stephanie’s. We had a NICU doctor, Dr. Atarian that was like, Don’t listen to what everyone has to say because she’s going to write her own story. Margo’s going to do what Margo’s going to do. Don’t let anyone forecast that for her. And you are just along for the ride.
[00:39:41] And that has stuck with me. But I also had a nurse named Stephanie that was like, I have a kid with seizures and this is all okay. Like you’re doing great and you’re going to be fine. And here are some things to set you up for success. Thank you. Thank you for the Stephanie’s and the Amy’s [00:40:00] and you know, the NICU and the hospital system and the medical teams.
[00:40:03] We need more of you. But on that note, like speaking of hospital teams, complex care, hotlines, or even just like telling us or warning us that when we transition home, we might encounter issues or delays with medications because the continuity of care is going to change when you are an outpatient and you’re working with outpatient entities like an outpatient pharmacy or an outpatient therapy service.
[00:40:31] Nobody warned us about the bumpy road with those aspects.
[00:40:36] Alyssa: Yeah. And one person said like better training on like who exactly you’re supposed to call for what, you know, she was taught more or less that like, you know, your pediatrician. It’s like the hub. So you call your pediatrician for issues. And then she would like call and they’d be like, no, you need to call neurology.
[00:40:53] And she’s like, oh, that tracks. How do I get to them? Yeah.
[00:40:58] Erica: Also, okay, on that [00:41:00] note, and kind of circling back to your comment about the sleep study. And how it took so long for Gemma to get that. Do it in the hospital. Getting every test done while you’re there. Do it in the hospital before you
[00:41:11] Alyssa: go home. Yes.
[00:41:13] Like. Cause they will find a way to work that kid in before they get discharged within like the week, if not the day. If you need an MRI, if you need a sleep study, if you need an EEG, whatever that tiny baby needs, they will fast track it. while they’re in the NICU. And the minute that you leave the NICU, now you’re part of outpatient services and it could be months.
[00:41:35] If not, longer.
[00:41:37] Erica: And listen, moms, dads, caregivers, I know that you’re ready to go home. I know that you’re itching. When you’re ready, you are ready. And it feels like you don’t want anything to slow that progress down. I get that. But I cannot stress enough if there is something that they are suggesting you do.
[00:41:54] Say, can we do that while we’re here? Let’s do it. Wait the three more days because it could be [00:42:00] months and some of that stuff is absolutely critical. So, thank you for the person who submitted that response. We loved it.
[00:42:08] Alyssa: Yes. Backtracking really quick. We got to talk about this too. I think a lot of us, certainly a big chunk of us, don’t get this at all, right?
[00:42:16] Like getting signed up for whatever waivers you qualify for, usually a Medicaid waiver, in the NICU before you leave. That happened for a lot of us. It did not happen for everyone, though. We had plenty of people who were like, oh, they told us we wouldn’t qualify for like literally anything. And because each state is different, like a couple of those people, I messaged them back and I was like, was that true?
[00:42:35] And they were like, no, of course it wasn’t true. Like we at least qualified for like some kind of waiver or whatever. And I was like, oh, okay. Yeah. So first of all, asking for everything that you can, you know, like, even if you don’t qualify for it, like, what’s the process for social security? What’s the process for disability?
[00:42:51] Like, I don’t know, get the information at least. Like it works different in different places. Maybe your family will qualify. Maybe they won’t, but like, You’ll at least have something right, even [00:43:00] like trip reimbursement and on the note on the back of that again, if your child had a trach vent, there was probably some discussion about this before you left the hospital.
[00:43:11] I think like the degree to which varies very wildly, but like. Respite care, in home nursing, maybe that came up for you. A lot of people said at least they had that discussion. If their child again had a trach vent. Most other families were like, I didn’t even know that was a program that literally existed until other caregivers told me about it.
[00:43:32] And my kid did have these interventions, like G tube, this, that, whatever, like.
[00:43:37] Erica: Yes, I do see that as a pattern. Kids who are more technology dependent, so things like a Trachan event, they definitely have those discussions, because a lot of hospitals don’t even feel safe discharging those patients without home health nursing established.
[00:43:53] We can do better for the families who, you know, are a step down below that. I cannot express it enough. [00:44:00] Ask for a social worker. Some of us don’t even know what social workers do at a hospital, but these are the things. Ask about the supports. If you don’t know what to ask for, send us a DM. We’ll give you a list, but also talk to your fellow caregivers.
[00:44:15] Oh, on that note, Loved this one. Let’s meet other families. Doctors, social workers, teams, introduce us to other families. I know it feels weird because there’s HIPAA violations, but be like, hey, you should go have coffee at eight o’clock because I know this other mom that’s getting coffee at eight o’clock and y’all probably need to meet.
[00:44:36] Alyssa: Also, HIPAA doesn’t mean that doctors are never allowed to like be the go between. It doesn’t mean that at all. All it means is like, They can’t give you all the information about this other family that’s like going through something similar. However, if you’re like, Hey, I really want to meet a family.
[00:44:54] This is where I’ll be. This is my phone number. This is my name. Can you tell another family that [00:45:00] would be open to doing that? Then the doctor can do that for you. They are allowed to do that. Also, Backtracking super quick on this Medicaid thing because this will come up for some of you. Actually, I don’t know if it came up for you, Erica, but it definitely was an issue for me.
[00:45:12] So in the NICU, Gemma did get signed up for her Medicaid waiver. She got her secondary insurance and all that stuff. And we live in Pennsylvania and all of her doctors who were in Ohio at the time set up all of her DME supply stuff in Ohio. Do you know what happens when they do that? Problems. Medicaid from Pennsylvania.
[00:45:32] does not pay for DME supplies that come out of Ohio providers. They have to be Pennsylvania providers. There are tons and tons and tons and tons and tons of Pennsylvania providers. You literally just have to, like, make sure your doctor sends it to one in Pennsylvania and not in Ohio. If you’re on a border, make sure it’s in your state.
[00:45:53] Just make sure it’s in your state because it was a huge nightmare. That was the thing that we did this year. I don’t know if you remember [00:46:00] that we had to set all of that up this year. Yeah. We had to transfer providers and that was awful. It was awful. We did that this summer and it was a nightmare. Get it done beforehand.
[00:46:10] I
[00:46:10] Erica: mean, that’s definitely a challenge for a lot of families because children’s hospitals, there’s only a few major children’s hospitals in a state. If you’re lucky, some of them only have one, some of them have zero and you have to go, you know, to a neighboring state. And we can’t always guarantee that those teams are going to be experts on the supports.
[00:46:31] in their state. So on top of that, let’s talk about resources. Like there are so many resources for families to help guide you through that. A big one is a place called Family Voices. Ask questions and, and ask like, who can you call in your own state to really prepare you for that transition going home?
[00:46:50] Theoretically, your social worker should be able to help be that guide for you. But in my experience, you do have to ask for it sometimes. I don’t know why it shouldn’t be that way, [00:47:00] but I hear that a lot from people in our communities that would have been the case had they known to ask for it. So not only that, but this kind of segues into the last piece that I want to mention and I’m feeling like my rage boil over right now.
[00:47:18] We’ve built up a lot of rage in this conversation. Yeah, it’s kind of like triggering a lot of memories and feelings. And it’s funny because I literally just wrote a letter to the governor of Illinois about this. So I have a request to all medical professionals and systems to really help caregivers who are leaving the hospital be set up with.
[00:47:40] some sort of mental health support following their discharge. The focus is so heavily on the child, and rightfully so. But I feel like so many of our systems are forgetting that a fragile, traumatized mother and father, or caregiver in general, [00:48:00] is going home and now having to manage all of these things on their own.
[00:48:04] Something that took no less than 15 people in a hospital to manage. Think about it. Doctors, specialists. You have your neodatologist, but then you also have all your subspecialties and their little fellows and residents and attendees, and then you have your lab and your pharmacy and your You have your therapist and you have your nurses.
[00:48:23] There were no less than 15 people that I knew by name and face while in the NICU. And then we went home and it was me and Randy and I was not okay. I would tell you that I was okay and I was overjoyed to be home, but I was not okay. And I know based on our past experiences and conversations, you were not okay either.
[00:48:46] Oh no. By and large. Most caregivers are saying they were not okay. We need better postpartum support in general, like widespread postpartum maternal mental health support. Yes, please. [00:49:00] Let’s make that a thing. But especially when you’re going home from the NICU with a baby, I just don’t understand how that is not a thing.
[00:49:08] How a social worker in an institution, how there’s not a team of them that have already like figured out how to make this happen. Like, Someone coming to our home and checking in on us. Someone just like giving us a phone call and doing that kind of support for a while. You know what? Better yet, I know a lot of parents who are like, years out from being NICU parents who would love to give back in that way.
[00:49:32] Let’s see more peer support programs where parents are reaching out to other parents and saying, Hey, I know what it’s like to be there at home, hypervigilant, watching your baby, making sure all throughout the night they’re still breathing. Like, I get it.
[00:49:45] Alyssa: Peer support programs? that are at least partially supported by the hospital, right?
[00:49:52] So like, not a peer support program that you have to work around the medical system. to run, but one that’s like integrated into the hospitals [00:50:00] that like when you have a baby in the NICU, they can hand you a piece of paper or they can be like, this parent will meet you if you want to like, whatever. Not like, oh, if you go to this website and you fill out this form and you do all this.
[00:50:12] Yeah. Like stop making it complicated. Like these hospital systems have the resources to do this. And a lot of times they even will have some type of peer support system and it just. is very hard to utilize.
[00:50:25] Erica: Oh my gosh, could you imagine if I had Alyssa call me at home the week after we got there and asked me how I was doing and then maybe said something pointed like this was actually a response from a caregiver and we might have already mentioned it.
[00:50:40] But hey, has anyone told you how to set those alarms on the monitor? Or the feeding pump to lower so the volume isn’t screeching in your ear. Has anyone told you how to reset those? Let me give you a YouTube link, something that only a caregiver would know because they’ve lived that life. It would have just made all the [00:51:00] difference.
[00:51:00] Yeah. Okay. We have covered a wide span of our recommendations from the community. I hope the right people are listening.
[00:51:11] Alyssa: This covers both, right? This is for the people who like, maybe you’re still inpatient, or maybe you just got home and are like, I didn’t get any of this stuff, now I need to start asking for things.
[00:51:21] Like, this is for you. This covers all the gaps. Because of that, you’re probably not quite ready for this next section, but I don’t want to count you out. You do you. Those of you that have been going through this for a long time and are like, yeah, I’m years out and this is frustrating and I wish things were better and I want to do something.
[00:51:41] I
[00:51:41] Erica: think this is for everyone. This next section. Mm-hmm. But this is, especially for the people who are thinking, why isn’t anyone studying this? Why isn’t anyone doing this ? Are there a team of people out there, even like, besides those caregivers who are mm-hmm. Have a lot of complaints to file in the complaint department for these [00:52:00] things?
[00:52:01] Yes. But the people who are really in positions to change this, our medical professionals, our policy makers, are they listening? And the thing is. We have had the opportunity to partner with an incredible team at Lori’s Children’s thanks to Dr. Carolyn Foster who oversees the foster labs. And I want to say that this is a team of doctors and medical professionals and researchers who are passionate about improving care for medically complex and disabled kids in their home.
[00:52:35] Not just the hospital but in their home because they all see the value and the benefit of children with medical complexities and disabilities living and thriving in their homes with their families. So they’re out there, they’re doing this. We somehow got lucky enough to enter into the chat with these folks and talk about how we’ve got this incredible community of caregivers who [00:53:00] do have a lot to say.
[00:53:01] And wouldn’t it be neat if we could take these two groups and connect them because we have a lot of motivated people in our audience who are at that point in their lives where they want to give back. They want to like use their experience, their voice, their story to really make meaningful, good change for their community.
[00:53:18] themselves, but also other families who are impacted by medically complex caregiving. And to me, I just think it’s so exciting that we’re at this place with technology and social media, which has a lot of drawbacks, but this is like the good that can come from the power of social media community like ours.
[00:53:38] So I’m thrilled to talk about the Safe Care at Home for Kids Learning Lab and how, you know, we are partnering with them to recruit caregivers for their study that is specifically looking at how to make home care safer for medically complex kids, their families, the caregivers, all of it. So they can officially have [00:54:00] published data to help inform clinicians, policymakers, really anyone on what caregiving
[00:54:07] looks like at home. the gaps that exist and how we can make it safer.
[00:54:12] Alyssa: And it’s also not coming from like an assumption of what care should look like or whatever at home. Right? Like this is starting from the baseline of like, this is what caregivers are doing at home and going from there, because I do feel like a lot of these models have been sort of like.
[00:54:32] backwards. Like the hospital model right now is set up backwards, right? It’s like, this is what we do at the hospital and this is how you’re going to mirror it at home. And this study is doing the opposite. It’s taking your caregiver, your family experience at home, and then it’s trying to build models from there.
[00:54:46] Like how do we improve that starting from that baseline, not starting from the hospital baseline, because we’re not in hospitals. We’re just not in hospitals that often. And that only has so much transferability, like how you operate in a hospital versus how you operate at [00:55:00] home.
[00:55:00] Erica: And you know the last week of just talking about the disconnect or the challenges we face from hospital life to home life, therein lies the problem.
[00:55:08] There’s a huge misunderstanding and just lack of information that really details what care home really looks like and the challenges of it. The way that we problem solve and come up with solutions and then like determining are those the safest solutions or could we be designing things better so caregivers aren’t wasting hours having to come up with these solutions, right?
[00:55:32] Or sadly, so that they’re not experiencing a crisis from a medical error, be it a medication issue or an equipment malfunctioning. Like these are really important things for researchers to understand. But the fact that they are partnering with families. and really wanting, you know, that glimpse of their everyday life is huge.
[00:55:54] This would only take about a week of a caregiver detailing and providing feedback of their [00:56:00] life. There are some follow up interviews, but the good thing is that this is flexible. So like, if your child is sick right now, because hello, it’s January, we all just went through the holidays, you don’t have to start it right now.
[00:56:11] You can start it in a couple weeks. Talk with them about that. They’re super flexible.
[00:56:15] Alyssa: Also on the giving feedback throughout the week, they’re not expecting you to like, take a picture of every single thing you do every day. I think the criteria was like one or two check ins a day or something along those lines.
[00:56:27] It’s just going to be like, as you’re going about your day, you’re going to make note of like how you’re doing whatever particular thing. Right. So it’s relatively, again, flexible and not adding a whole lot onto like what you’re already doing. And. And since you are doing work for this research team, and since your input is very valuable, there is an up to 195 gift card upon completion of the study.
[00:56:54] So just something to keep in mind.
[00:56:56] Erica: Yeah. So we will have a [00:57:00] link to sign up for this listed in the notes of this podcast. We also have it linked in our bio on Instagram. If you go to our Instagram, we’ve posted a lot of information about this study by now, so definitely turn to there if you need to find it.
[00:57:16] We will also post a link to their website so you can read about it there as well.
[00:57:20] Alyssa: Two last caveats. Pretty sure this is just for U. S. citizens, I think. as far as we understand. The other thing is, there are a limited number of spots. So what you’re filling out when you go to this link is basically like a survey application.
[00:57:37] It’s relatively short. And then they will contact you from there. Again, there’s a limited number of spots. So we can’t guarantee that like, because you apply for this, you’ll necessarily get into their study. That’s going to be worked out on their end.
[00:57:51] Erica: Yeah, I think that pretty much sums it up. Alyssa, we have traveled back in time and [00:58:00] somehow moved forward, which is exciting because we’re at an exciting moment in our lives as caregivers, but also as caffeinated caregivers.
[00:58:08] Do we have anything we want to wrap today’s episode up with?
[00:58:12] Alyssa: I think there has been much airing of grievances today as we are allowed to do as caregivers. And I think that’s fair. I think we’re allowed to air grievances. We’re allowed to be frustrated, but then if you’re the type of person who has the interest and the energy and the bandwidth to take that frustration and try and channel it in something, we are going to be giving you options and this research study is one of them because I am one of those people I have a lot of like righteous anger especially built up after today’s conversation hearing all these stories in ways that like families like ours were not adequately supported but I want to be able to do something because I’m not very good at like sitting still oftentimes even when we’re in the thick of it
[00:58:56] Erica: yeah same
[00:58:58] Alyssa: at same time it’s [00:59:00] 2025 and if you’re like no you You know what?
[00:59:03] I don’t want to do that. I don’t have the energy. I don’t have the bandwidth. I’m focusing on, like, me and being soft and, like, being with my family this year. I feel you, man. You do, yo. Yeah. No hard feelings. Like, You stay out of it. You like make a nice little bubble for you and your kids and your family to be in.
[00:59:22] I’m here for that too. I’m here for it.
[00:59:25] Erica: Snaps. And with that, may the force of caffeinated caregiving be with all of us. Heck yeah. All right. Sayonara. Bye.
