Hi everybody, my name is Jessie Levy and I am going to introduce our panelists here in a minute. I work for Atrium Health, Carolina's Medical Center and Levine Children's Hospital. And I am the Trauma Support Services Program Manager and have the joy of overseeing our Trauma Survivors Network Program, where I have been able to work with the women who we're gonna be talking to today for quite a number of years. They all are volunteers with our Trauma Survivors Network and have quite a few years of experience sharing their stories and supporting other patients going through something similar. So I'm excited to have them on board. So I'm gonna let them introduce themselves and each tell a little bit about their story and what brings them to this conversation about traumatic brain injuries. So I'm gonna start with CJ, who is first on my screen. All right, my name is CJ Knight. I am the wife of a trauma survivor. My husband fell off a ladder in 2015 onto concrete and he was in the hospital and in rehab for about 20 days. And there was a lot of learning in that 20 days. So I can tell you a little more, we're gonna go through some other questions, but when my husband went to work that day, it was a Saturday and it was a scheduled, you know, overtime. And my daughter and my son and I were home in our pajamas watching TV when we got that call. And it was definitely the beginning of a whole new journey for our lives as a family, as a spouse, as my husband, as just in his own life. Thank you, CJ. Joanne. Hi, my name is Joanne Hartright and I have a son that had a traumatic brain injury. He was 21 and at the time he was going to UNC Chapel Hill and he had come home on Labor Day weekend, you know, just because it was Labor Day weekend. And what happened was he went over to one of his old friend's house and he got on the skateboard. And normally he would have his helmet on but they were just messing around out front. And he messed around, went down the hill, hit the gravel, fell back on his head, six feet two, I think he is, whatever, and 200 pounds or so. And then went into a seizure and his friend called 911 and called me when he was on the ambulance. So I met them at the hospital that day which was Labor Day weekend. And that was the beginning of this long journey. He was seizing and one side was like a stroke. The other side was okay when I met at the ER. But the rest was history. He was in a trauma ICU for over a month and then progressed all the way through to MICU. And then finally to rehab, that kind of thing. So, and that's the story. That's the gist of it. Thanks, Joanne. And Renda. My son was 14. He had a traumatic brain injury due to an explosive device that him and his brother built, a CO2 cartridge filled with black powder that they were trying to make a rocket out of. Their rocket didn't work. Went into the side of his head, caused him to have stroke-like symptoms because it severed the arteries on the right side of the brain. So he has left side paralysis. And that was when he was 14. He's now 24 and just had surgery number 14 yesterday to release some tendons in his ankle and toes. But we spent two and a half weeks in the PICU, another two or three weeks traveling around the hospital and seven weeks in rehab before he was sent home for lack of progress in rehab. But we continue to do rehab and work 10 years later and just continue the journey. Thank you, Renda. So before we kind of get into all the questions, just to set the kind of process that you guys each had, do you mind each sharing, we'll just keep going in the same order, kind of how you got to the hospital? So what was your pre-hospital experience? What was your experience inpatient? So what did that look like? Whether it was ICU, step-down, did you have rehab after your inpatient experience and then any outpatient care? Just so folks know, as we go through this experience, what type of services you received throughout that trajectory? Okay, I'll go. As I said before, we were all in pajamas. So first thing we had to do was get dressed. And I didn't tell my kids much. They were 13 and, just 13, and 10. And I told them to get dressed. I didn't know what the severity of anything was, just that he was being transported to the hospital. As I was driving, I ended up going towards Presbyterian instead of CMC, Maine, and realized that I was headed to the wrong emergency room. When we got there, they didn't have a lot of information at that point. They were still triaging him. So we kind of were hanging out in the waiting room, myself and my two kids. And we were met by one of the managers from my husband's job. So when they did call me back, there was at least someone to kind of keep an eye on my kids. And when I came back, before I even saw my husband, the nurses kind of sat me down and explained what they had been doing, what his kind of demeanor was, that he was very confused. He was not necessarily making a lot of sense as far as he kept wanting to get out of the tub. He wasn't in a tub. But just being able to have that information before I saw him gave me a little bit of kind of a heads up so that I wasn't blindsided by some of the things that were going on inside his room. It took about maybe an hour, hour and a half before I got all of the information as far as they were admitting him. And things kind of went really fast after that. When we got into his room, they put him into the trauma ICU. And just a lot of things were going on. The nurses were amazing because they were able to kind of translate some of the things that were going on to me in more regular terms, like talking to me as not a medical professional and giving me a heads up of what kinds of things I could probably expect to happen in the first few days of having a traumatic brain injury. So I ended up spending the times that they were going in and out trying to get him set up and everything, calling around, getting someone to take my kids and our new dog and basically ended up, I was grateful that I had a good support system and I could have people who could manage my kids, get them to and from school because I didn't know how long we were gonna be there. But with ICU, I knew I was gonna be there at least a couple of days overnight. So being able to have the nurses giving me that plain English information really helped me be able to manage my family on top of what I needed to do and be for my husband. I did stay at the hospital for most of his time in the ICU the first time he was in there. And I didn't have to worry because my kids were taken care of and I was able to get the information and be available for whenever doctors made rounds. And I think that really helped me to not be as terrified. My husband was conscious. He was not, he did not have to be intubated. He did not have to have surgery, although he almost did. But there were so many things that I really appreciate the nurses being able to translate because sometimes when doctors come in they're giving all this information and it's a lot of information. It's kind of hard to wrap your head around it because so much comes at you at such a, I mean, they only have a small amount of time. They have so many people to see. So being able to have those nurses there to kind of go back over it and kind of translate to help me to understand what exactly was happening. My husband did step down to a regular room and was still very, somewhat disoriented. He didn't really have any idea why he was there. He's like, I don't understand why I'm here. He didn't realize that he had been hurt. He didn't feel hurt. He didn't feel any pain. He just, he didn't have a lot of logical sense because he didn't know what had happened to him. He didn't remember. And then somewhere around the middle of the night on the day that they had stepped him down, he called me, I had gone home for the first time and he called me because his head hurt so much. And instead of calling the nurses, he called me because he still wasn't recognizing where he was. He didn't understand where he was. So I ended up being able to call the nurses station and said, you know, he's calling me. You know, it's two in the morning and he's calling me because his head hurts. They had done a CT before I got back in there and realized that his brain was now swelling, which it was the days that they said that he would probably be most combative didn't happen when they said it. It wasn't until probably a week after that his brain had swollen to the point where it was causing some of those behaviors, those mannerisms. And at that point, they had already put him back into ICU to see if they could medically manage the swelling before they did surgery. He was scheduled for surgery just in case. And so by the time I got back, he was in there. It was a hard night. We kept the nurses busy because he kept trying to get out of bed and setting off the alarms. And he kept trying to take off everything, all of his leads, everything. And they were just so patient. And I mean, they were firm with him, but they were still very patient and very encouraging to me that this is not abnormal. This is very much what they expect, that they're not, you know, this isn't surprising that, you know, they're still watching his numbers. They haven't gone up. So still giving me that really plain English that I needed to kind of calm my nerves. I'm not one who gets freaked out by a lot of stuff. I'm pretty easy going. I'm pretty go with the flow. I kind of wait and see and kind of watch. But it was a lot harder to watch it with my husband knowing that, okay, I know this is normal, but where is this going to head? Where is this leading? And somewhere around, you know, six in the morning, all of a sudden his levels kind of evened out and stayed down and he was able to avoid the surgery. And funny enough, we actually had a friend who was supposed to be on his surgical team as his anesthesiologist. So he was very happy that he didn't have to be part of that as well. But it was only about four or five days later that he ended up going to rehab. And I think for him, that was his hardest time. In some ways it was mine too, because I wasn't staying with him. I was back home, I was back to work trying to keep on top of that. There's only so many lessons plans you can make for a class. And so it was a little harder because I wasn't there for all of it. So I would get the information during, like we would have strategy meetings and they would kind of give me the notes and fill me in and ask me any questions, ask me if I had any questions. So I think the rehab part was probably the least it was the harder part for me because I wasn't as much in the know of the everyday things that he was doing and that he was going through. Because it was in January, my kids were not allowed at the hospital. So they did not get to see their dad. We snuck them in. We did sneak them in once because they just, my daughter blamed herself for the accident. Her birthday was three days before this event. And she thought he was doing overtime to pay for her birthday. And so it was really important that she be able to see him and see that he was actually really still there. But it was hard, not being able to be there every day, not being able to be in the know of everything that was going on in rehab because there were other people that required my support as well. And so when he was discharged, that was amazing. We were so excited to have him home. Kids were excited that he was there. We did end up having to have someone come for probably about a month, maybe a little more to stay with him because he wasn't cognitively and stability wise, he still wasn't quite where he would be safe by himself. His nurse is a whole nother story. We did go through workman's comp and the nurse that we ended up with was horrible. And at several points, she would catch me as I came home to complain about different things that he would do that he didn't even realize he was annoying. Like he'd watch TV and he'd be on his phone and playing a video and that irritated her. And in a lot of ways, I'm like, but you know he has a brain injury. There are things that are going to be different from that. And at the end, I found out later that she would come and then she'd go out to her car and sit for two hours in her car, not being where my husband was. At that point, we were feeling like he could probably stay by himself. I mean, obviously he was doing that for two hours without her in the house. So we did contact the company that she was with. In all of that, she did manage to help him get to his appointments as outpatient rehab. And again, she would just kind of wait in the waiting room. She wasn't there to be able to get the information, to be able to relay that information to me. I had to get that information through his after visit paperwork that he would bring home and make phone calls to people and kind of get an update verbally because it wasn't happening. I think if the rehab center did a great job of being able to communicate that to me, that was just her thing, that she was not doing her job as she needed to. Once he did get to the point where he was able to be without a nurse, his primary focus was to go back to work, which his caseworker was really amazed at because he was very motivated, which is not really common for someone with traumatic brain injury. He was very motivated to get back to work. And that's still very much a motivation. As we've gone through the years since then, we've done brain rehab, which helped a lot. He didn't really hit a point where his moods would swing really rapidly until we were about four or five months out. And at that point we were looking for anything. About a year after his accident, we got something in the mail from Brain Alliance that talked about Trauma Survivors Network and that included an aspect for families and for caregivers and for kids. And we were struggling as a family at that point. My kids were afraid of my husband because he would have these outbursts. And I ended up having to be the referee, which as a spouse, we wanna be equals and we don't wanna have to overrule each other. And so the second six months, I think, as a family was our worst, our hardest part. Being able to get to where he could hear about other people's stories, he could hear that it wasn't just him, did a lot. And he started working with Brain Alliance and going to the next steps. And he really was motivated to be part of Trauma Survivors Network. And my kids, it was the only place that they really felt like they could share. They didn't wanna talk to me. They still, they're 23 and almost 21 now. And they still don't really talk about it. They never wanted to add anything to my load. And so I appreciate so much that they did have an outlet and super grateful to Atrium Health for having that program in place because it really has helped our family being able to navigate this whole thing. We are 10 years out now. And some of the things that we have learned along the way is that... CJ, we're gonna come back to some of that. I'm gonna stop you for just one second because I think I'm gonna ask some of these questions as we go forward. So I'm gonna have Joanne jump in here and tell us a little bit about Zach's trajectory. Okay, so he was in the ER and they quickly, swiftly moved him right up to trauma ICU. And then they scooted me along to the chaplain in the outpatient area trauma ICU, where I sat there, I was like, oh, what's the chaplain sitting here with me for? And I was like, it just made me crazy. So I was sitting there for the longest time. It felt like hours, I'm sure it wasn't that long. But I decided that I was gonna find him and I knew he was in the trauma ICU. And- And Joanne, it might be helpful to clarify, you did work for the hospital. I did work for, yes. I was a nurse there in the hospital. So I went over and I knew where the little button was to push the doors open. And I went, boom. A mother just doesn't want to lose their child. So I was like, what's going on? I didn't know how bad he was, you know, and I, with the chaplain sitting there, it made me even feel worse. I know it should have felt better, but, and that was why they were sitting with me and my daughter. It was just me and my daughter. I had called my daughter from the ER. I said, don't go to work, turn around, come here. I need you. So it was her and me. And so I left and badged, hit the button and went in. And as soon as I went in, a wonderful nurse came around. I think she must've detected that I was like crazed. And she must've known that I was the mother of the kid in the corner. She quickly pulled the chair and then said, sit down, sit down. I'm going to tell you what's going on and I'm going to show you where he is, but you can't go in because that will really bother the people there. But he's being worked on now. I said, he's not dead. He said, she said, no, he's not. We're working on him. And that's all I needed. I just needed to know what was going on. And then I went back, they kind of screwed me back. I sat there for a little while. And then this one resident at the time that is a doctor now, or he was a doctor then I shouldn't say that. He had come over and talked to me. And he said, it's not good. And I really appreciated that. He said, it's not good. We've called the, we've called the neurosurgeon in and and so he's on his way in and we're going to find out the extent of his head injury. So we've intubated him and you know, we're just kind of waiting for that guy to come and see what we can do. And he's on his way. So I said, okay, good. It made me feel good that he was so honest and frank and, and, you know, he held my hands and he said, we're going to work, we're working on him where, you know, we're working on him. And then he said, I think it's best if you go back out and we'll come out after the neurosurgeon comes, he'll come and talk to you. And then we'll bring you in after he's stabilized. We're trying to get him stabilized. So I said, okay, great. So it was very, I needed that communication and I needed it from that resident at the time. He was wonderful. So that made me feel a lot better. And I went back and sat with my daughter and then we just waited. So one of my, so he came to the hospital ambulance. Yes. Yes. It was okay. This is amazing experience actually. It was Labor Day weekend and we are in a trauma facility, right guys? It's like a really busy place. I pulled up and I thought the hospital was closed because there were no cars around. There were no ambulances in the Bay there. There was nothing. I thought, am I in the wrong place? And then, then someone said, you park your car over here. I started parking my car and I went, and then I got there before he got there because I live really close. I lived in Freedom Park, which was really close. So I was there before Zach got there. And once I was there, I was standing outside the doors waiting for him to come. And then I turned around and there were two teams there. And I'll never forget that. I knew, oh my goodness, all these people are waiting for my son. They were just waiting. It was almost like no one was there because everyone was having barbecues on Labor Day. So here we go. And I turned around and there's these two teams, there's a pediatric team and there's an adult team. I'm like, oh my goodness. Because my son was 21 and he was kind of skinny, you know, and young looking. So, but then they pulled up and he was seizing, you know, really bad. And then they pulled him in and brought him into the room there. And so I just kind of waited and watched and they were so, so fast and they brought him right up to a trauma ICU without my even knowing it. I'm like, where is he? Where is he now? And then they said, we want you to wait for your daughter. She's coming. You know, we talked to her too. She called and we want you to stand right here and wait for her. And the two of you, we're going to lead you up together. There's nothing you can do now. They're getting him stabilized. They're, you know, doing everything. So they were very, very good in the ER. They really were. And then of course, then when I got up to the trauma unit, I felt like there's not a lot of communication because they were working on him so much. Now I know all that, but I just needed more talking, you know, I needed more talking. And then later on as things, you know, once I mentioned that, the chaplain would go in and get information and come out and talk. And so that was good too. Anything was helpful. Yeah. And after he was in his journey included ICU, step down, right, progressive at all, or just he was, he went through all the stages, he had sepsis, which was really not good. He had high fevers. They did everything. He got a cooling blanket and ICU, which they had never used before. He got on a rotoprone bed, which is like a capsule where he turned, they turned him upside down. So as he, you know, his, the fluid would come out of him because he was in, you know, very bad sepsis and had lots of stuff in his lungs and just a lot of this innovative stuff that never had happened before that they said, we're going to try this, we're going to try that. I said, anything go. And then, okay. So then he stabilized there and went to MICU and started waking up in MICU and still had some fevers, but he was doing better. And then he went to the step down unit when I decided I was going to sleep next to him, which wasn't a good idea because he kept falling out of bed. That was making me crazy. And I was up all night. And then finally they sent me home. They said, do not sleep here. We got him. We got him. He's crazy. Cause you're sleeping here. So I said, okay. Okay. Then I went home and, and then after that, of course he progressed on, you know, was 11 a and blah, blah, blah. And then went to rehab and, and then came home from rehab, but some outpatient services as well. Oh, patient, lots of outpatient services. Yeah. Lots of, lots of therapy, physical therapy, speech therapy occupational therapy, everything. And he, he really progressed. He really progressed. I think one of the, my favorite moments though, was when he was in rehab and he was still sort of crazy and everything. And we had just gotten him to rehab and put him in, he was in a net bed. And then I, you know, of course I put the phone in there as if he knew to call me on the phone. Like really? I don't know my number. He was like foggy, foggy. And me and my daughter went, we're going down to the corner place and getting something to eat and having a beer. Now he's in a net bed. We can take a break. So we went down to East Boulevard, Byron grill. Okay. Excuse me. And we did, as I'm drinking my beer, I got my phone all of a sudden it rang and it says we have on it. I said, Oh no. And so I picked it up and I heard this voice that said, mom, mom, he was talking. He knew me. He hadn't talked yet. He went, where are you? And I'll never forget that. That was the best thing I ever heard. I dropped everything. I like Anjali pay for this, whatever. And I ran back down the street all the way to rehab. I couldn't believe it. I couldn't believe it. And even the nurses didn't believe it because I said, he called me. They said, no. I said, he called me. Yes. And it wasn't his cell phone. He called me on the phone there because I left my phone number there. I said, you can call me if you need me thinking, eh, you know, anyways. So that was the best thing. That's the best moment. All right. All right. And Brenda, tell us a little bit about kind of what the trajectory looked like for Justin. Well, Justin, I know it was a long one, so we'll, I've got lots more questions to ask. That's fine. So Justin's accident happened at home and he was with his 16 year old brother and they told me they were going to make this rocket. I heard the boom. And just a few seconds later, I heard the siren go off at our local fire department and sirens start, but I didn't know what had happened. And I couldn't see them from the house. And so I was trying to call my son's cell phone. He wasn't answering. And a few minutes later, a fire truck pulls up into the driveway and I'm like, I don't know why you're here. I don't know what's happening. And they told me that there was an injured 14 year old out at the barn. So I showed him which way to go, ran across the field. And my 16 year old son was holding my 14 year old son's head in the crook of his arm. And there was a puddle of congealed blood under his head. And I was freaking out. And so I kept asking the paramedics, you know, is he going to be okay? Is he going to be okay? And they were like, we don't know. But we're calling a lifeline to Charlotte. So when the ambulance, the paramedics were there working on him, they took over my son and I. He went to the house, changed his shirt. Of course, he was covered in blood and they drove him from the house to our local hospital by ambulance and met the helicopter there. And so my 16 year old son and I are standing in the hospital parking lot, called my 18 year old son from work, told him what had happened. I was calling my aunt, people we went to church with, to pray for him because we didn't know how bad he was hurt, but they were airlifting him to Charlotte. Once we got to the hospital, the helicopter was already there and they kept him in the ambulance for like another 20 minutes. I'm trying to call my husband. He's not answering his phone. It was a Saturday morning or Saturday afternoon, it's about one o'clock. And he had taken on a job for somebody on the side that he was working at and decided to leave his cell phone in his truck. I was trying to get in touch with him. Sheriff's deputies came and talked to my 16 year old to find out what had happened, to do an investigation since it did involve explosives. And we were just standing there waiting and it was probably the longest day of my life to say the least. It took me a couple hours to find my husband. We drove to Charlotte. We live about two hours from Charlotte. We got there about four o'clock and they told us they were taking him to CMC Maine. So we went into the lobby at CMC Maine and told them that they had airlifted our son there and so they took us to the ER. They didn't have him there. They took us to the pediatric ER. He wasn't there. So they took us to the waiting room outside of the PICU and told us that someone would be out to talk to us. And we did not know if he was dead or alive until 10 o'clock that night. They came and got us and told us that the neurosurgeon wanted to talk to us. So they took us back to a conference room and the surgeon told us that it wasn't good, that they had removed the metal from his head. It had severed the main arteries to the right side of the brain. They tried to repair those. They were not successful. He coded twice on the operating table. They were able to give him blood, resuscitating, and basically they didn't know. It was going to be wait and see. And then they let us go in and see him. And of course he was comatose, intubated, wires, tubes coming out of him everywhere. And it was just a waiting game. And of course they, we talked to the chaplain about every day for over a week. He came in to talk to us and they didn't make any promises. They said, we don't do a prognosis for brain injury. Each one of them is different and we don't know. And the doctor on the floor there in the PICU, every evening he would come in, he'd pull up a chair, he'd sit down. Do you have any questions? You know, this is what's happening today. And after about a week, he was kind of breathing on his own, but he was still on the ventilator and they detected aspiration pneumonia in his lungs. So they put in a chest tube to drain the fluid from that. And they told us then that he had air bubbles on his lungs. And if one of those popped, it could deflate his lung. And I think it was a day or two later that happened and then his lung deflated. So they were going to put in another chest tube to drain the air, but he had been scheduled the next day to put a feeding tube in. So I asked the trauma surgeon, I said, could you just do both while you've got him sedated? Just do the feeding tube and the chest tube. So he doesn't have to go under sedation again tomorrow. So he did, which left us without a GI doctor, but hindsight, we didn't know that. But I was just trying to spare him anesthesia twice in 24 hours. So once the chest tubes went in, the lung reinflated, they were able to take him off the ventilator and take him out of the PICU. And the progressive care unit was full. So they sent us to the oncology floor on the 11th floor. And by that time, my husband and I had got a room at the Ronald McDonald house with him being pediatric. And that allowed us to have a place to stay, sleep, do our laundry. They fed us dinner every night. It was really a blessing for us and give us a little bit of space to decompress from the rigors of going to the hospital. And I actually walked back and forth to the Ronald McDonald house in the hospital. And people were like, well, let me give you a ride. And I'm like, no, I need this time. I need this space. I got to get my head right before I go in and see what's happening today. I don't know what the challenges of today are, but after about a week on the oncology floor, they started to get more patients. So they sent him to the 10th floor. They really wasn't able to, they said, we can only check on him about every two hours. And he needed more care than that. And then when a bed opened up on progressive care, he was there less than 24 hours. And they said, well, we have a bed in rehab. So he went to rehab about as soon as the chest tubes came out. And we locked the rehab floor, the doctors, Dr. Sa, Dr. M, we met each of them at that time. One would be on the floor for two weeks and then the next one for two weeks. And the PTs were great working with him. But after about seven weeks, they said, well, he's not participating. He didn't come anywhere near to the goals that they had laid out for him or anticipated him having. And so they discharged us home. And kind of against my wishes, but we still fight and he still does PT. We'll talk more about it too. I know Justin's gotten a lot of services. So one thing I think I want to make sure we really emphasize, because so much of these patient stories, when the patient has a traumatic brain injury, involve the family and the caregiver, in this case, the three of you guys. And so it's the reason for anyone who's wondering why we have three caregivers on the call today is why we're talking with the three of you, because often in these cases, our loved ones who were the patient don't know any of the details that you guys experienced in those first couple of days, first couple of days to first couple of weeks. So I'm wondering in the crisis phase, those first couple of hours to days, is there a story, like one particular story that stuck out to each of you? And I know you've had an opportunity to tell a few of those, but that might emphasize kind of the caregiver experience, the understanding that in these cases in particular, you guys are carrying the load of the information, the care, the coordination. Is there anything in particular that happened or didn't happen that you might want to share that can help really demonstrate that part of the story? I think in my case, it was just being able to have that time once I got my kids settled to be able to focus on what was going on and having those conversations about what could be the expected trajectory. Every nurse that I talked to reminded me that if you've seen one brain injury, you've seen one brain injury, everyone who has the brain injury reacts differently. The injury my husband has is the same one that Dale Earnhardt had, Dale Earnhardt died from his. My husband is still walking around, in fact, today he's playing golf, but being able to have time to ask those questions, but also being able to have time to think about what questions I needed to ask. So often people were asking me, well, what do you need, what do you need? And I didn't know, I couldn't answer that question because I was in the hospital with him, he was being taken care of. I didn't know what I was going to need once we left, I didn't know what the next phase was going to be or what it was going to look like when we got home. We even set it up, our master bedroom's on the second floor. We even looked at, well, maybe we need to make sure that he has a place downstairs so he doesn't have to travel upstairs. So really being able to have space to hear from those who deal with people with traumatic brain injuries every day and get some ideas as to things to think about, but also hearing that caution to, it's a wait and see, because you never know how it's going to, you don't know from one minute to the next for quite a while what is going to happen. Some days would be better and then you'd go backwards a little bit or a lot of it. And so not getting my hopes up that it was going to be all back to normal. A lot of uncertainty in those first- Yeah, but also the benefit of having people around that work with the patients every single day is that they can give you that space to kind of think through questions. I had the first nurse that he had even let me, wasn't supposed to take a picture, but I took a picture of his CAT scan so that I, and then she could talk through what I was actually seeing. I used that picture just this week in my class, but being able to have that space to question where things were going without the need to have all the answers immediately, I think was super important for me because there were so many different balls in play. Having young kids at home, having to focus on their, where they were, having my husband in the hospital, having to focus where he is, still having to put together things for my job. There's a lot of balls in the air. So having that space was absolutely crucial to me, not going nuts and being able to hear people say, it's okay to not know where we're going next. Yeah. Thanks, CJ. What about you, Joanne? Anything in particular? I agree with that. I totally agree with that. It's like you took off in a plane and then you're landing in another country. I mean, I've heard like people, little people that write talk about head injuries like that. You don't know how to navigate it. It's like you're lost. I am so grateful my daughter was with me every step of the way because she was my right hand and I was her right hand and we navigated together. It was really, really, really good. But I didn't go home. I stayed in the same clothes. I did not go home. And then finally, I think a nurse kicked me out and said, you got to go home and you got to sleep. Well, I went home, I took shower and I changed my clothes and came back. Because I couldn't stay away. So I do know that. And my daughter felt the same way. We had to be there every second every moment. Because when you have a moment when, in that instant, everything changes, it could change again. So I think it wasn't a fear, it was more of I wanted to be there the whole time. What was your question, though? Do you have a story? And obviously, you've shared plenty of stories, but also just wondering if there's anything that really stuck out in that time of a person? I know you talked a little bit about the chaplain, but it was there a provider or somebody that did something that they maybe shouldn't have done or the opposite of really impactful story from that time. I think when he was waking up was the hardest part. So when we went to 11a, I believe it was 11a. He was on a step down unit. Yeah, yeah, yeah, that was hard. That was really hard. And the waking up was the hardest part. And, you know, pulling things out in in MICU, all the tubes, he was pulling everything out. He was really crazy. And that was really upsetting. Because I when he was in a coma, I thought he was going to wake up and be fine. And he didn't, he woke up crazy. And so that made it much, much, much harder. That was the hardest phase for me. It really was. Yeah. It sounds like for both you guys is that uncertainty, and the need for support. And then also, I really, really like what you said, CJ, if you've seen one brain injury, you've seen one brain injury, that that there is no real expectation in this kind of injury for what comes next. It sounds like for both for both you guys, and I'm about to ask Brenda the same question. It's just day by day. So, Brenda, what about for you? Is there a story from those initial hours to days that you want to share about things that happened or didn't happen? Well, we were inundated with calls and messages, texts from family, friends, people we barely knew, who wanted to know, you know, what was happening. I don't want to say there's a morbid curiosity or whatever, but it almost seemed like there was. And so, we would try to update Facebook and, you know, if it's close friends texting or whatever, respond to them, but it was very overwhelming. I believe it was one of the social workers told us about a website called Caring Bridge or something that we could update. But, you know, everybody's on Facebook. So, that just seemed easier for us. I think I realized pretty quickly that ours was gonna be a marathon and not a sprint, and I was gonna have to pace myself. And for my own sanity, I was not going to be able to just micromanage everything. I was gonna have to take care of myself too. And I was already dealing with back issues from a herniated disc. So sleeping in the room was not an option. So, and I was actually completing my degree. So, I messaged my instructors and I was like, look, this is what's going on. I only have like three semesters left to finish my degree. I do not want to drop it because I'll never finish it. I've already been in school 20 plus years. So, they agreed to work with me. But what I actually did was I only attended school two days a week. It was a special program through the College for Adult Learners. And so between my husband and I, he would stay at the hospital when I was in school, and then I would go home, spend the night with my two teenagers, take them out to dinner, try to maintain my relationship with them, because especially the 16 year old that was there, you know, he was traumatized, not physically, but by all means, emotionally and mentally. And I felt guilty for leaving them and been in Charlotte all the time. And so I would take that opportunity to stay with them and not fold their clothes for them. They would put them in the wash, but not put them up. And take them out to eat, talk to them. And, you know, people were saying, well, you're staying at the Ronald McDonald house, you know, how are you doing? And I was like, well, you sleep, but you don't rest. You wake up just as stressed out as you were the night before when you went to bed. But we had some phenomenal nurses who were very reassuring with Justin and they were like, you have the best doctors, you have the best care. You know, he's in good hands. And the doctors would tell me, well, we can't heal him. All we can do is create an environment that facilitates his own body to heal. And we don't make any guarantees. So it was very uncertain during the PICU stages. I was telling some friends last night about one particular nurse. She was telling me that he was having a neurostorm. And I was like, no, I think he's having a bowel movement. And she's like, no, this is a neurostorm. You might not want to admit it, but that's what it is. And I was like, I still think it's a bowel movement. And of course, I could smell it. I'm like, you know, as if only she figured out that he had indeed had a bowel movement and that's what he was fussing about. But I mean, we got very familiar with neurostorm and he did that on a regular basis for six months. So, yeah, it's not that it didn't happen. But that particular time I could see, no, that's not what it is. But and one nurse, she told us that she had a daughter who had special needs. And that was why she got into nursing. And she was very just somebody who would come alongside of us and listen to us. And, you know, I've been in your shoes. I know what you're going through. And that made a big difference. And some were very distant and just kind of pass you off like you don't know anything. And I was like, do not do that to me. I do not like been placated or just, you know, oh, he's fine. He's fine. And I might know he's not fine. And we did have that instance where I finally demanded to see a doctor. And I was like, look, his numbers have been dropping for the past hour. I want to know what's going on. The nurse just keeps telling me that the alarms aren't going to go off until the numbers hit bottom. And I'm not going to wait that long. And he was like, we're aware of it. We're working with the endocrinologist to adjust his meds to bring his numbers back up. I'm like, well, that's all I needed to hear. Not that he's fine. He's fine. He's fine when I know he's not. Just tell me you're aware and you're working on it. Like I say, the doctors were always very quick to sit with me and answer any questions and tell me what they didn't know. But a lot of it they didn't. And, you know, you just have to accept that. Rhonda, one thing I'd love for you to talk just a little bit more about, because I know you and I have talked about this a lot over the years, is how, especially over time, but with the stories you're just sharing, I can even see it in the initial stages of Justin's injury. You know him best, right? When you and I sometimes share with CJ and Joanne, we do a lot of trainings together. We've had the opportunity to do that. And I'd like to say that Renda has an MD in Justin and really like knows everything there is to know about his particular injury. And so it's interesting for me to hear that that really started early on. And so I'm wondering if you could share a little more, and then I'm going to go back to Joanne and CJ, just that understanding that like you may not know everything there is to know about brain injuries, but you know your kid, right? You know when he's having a bowel movement. And you know, you come with, in Justin's case, 14 years of experience of knowing that the ins and outs and the ups and downs of that child before injury. And so could you talk a little bit more about just how you advocated in that way, while you were getting your MD in Justin's injury? Well, pre-injury, I actually homeschooled my three boys. So I was with them 24-7 practically. I mean, they participated in sports and some extracurricular activities, especially as they got to be teenagers. But I did feel like I knew them. They were not strangers to me. I knew their personalities, their quirks and what made them tick. And I did have a nurse in those early days. She said, you are the expert in your son. We did not know him until we see him laying here on this bed, but you knew him before. And you know him better than we do. So if you see something that's not like your son, you need to tell us. And I took that to heart because, you know, I didn't know his personality. And even though they told me brain injury could change that personality, I was like, no, I want the same stubborn, hardheaded kid that I had before. And I got him. He still has that same stubborn personality. But looking at Justin, most people think that he's almost comatose. He has that blank look of brain injury, and it has improved over the 10 years. But they just, they're pretty dismissive of him a lot of times. And with PTs, OTs, anybody that we see, I'm like, you're not going to know Justin until you've worked with him a while. And then you will see what he's capable of. And our current PT, we've been with him for close to three years now. And I was telling him that he's like, absolutely. The first time I looked at Justin, I had no clue what he could do. But as I worked with him for two or three weeks, then we, you know, we figured out what he's capable of. And Medicaid, when he turned 21, he's supposed to get six PT visits a year. And that's mostly for equipment evaluations for wheelchairs for whatever he needs, beds. And I was like, how are you going to know what he needs? If you come in and see him but don't know what he's capable of? You're not going to know the equipment that he's going to need. And fortunately, after we're on our 12th PT in 10 years, outpatient PTs. But you know, sometimes you just have to keep, and I tell other parents, if a PT tells you no, or they don't know what to do, you go find a different PT. And some of our PTs have lasted years, some of them have lasted weeks, some of them have lasted months. And some of them just flat out say, I don't know what to do with him. And you just have to find the one that has the patience and the and it's willing to figure out what they can do with him. And he did have a IQ test done turn 21 for the innovations waiver. And he scored an 80 on a modified test. And, you know, I know he's very cognitively aware, he will communicate with you even if he's nonverbal. And you know, it's, but most people who don't get to know him don't know that. They don't see it on his face, or his body language. Yeah, just being a tireless advocate, right? I know for you, it's just never giving up on what you need. Yeah, that's my job. That's what I wanted to praise you about is you have to advocate for your child, you really do. It's amazing. That's the one thing that I do know, between my daughter and myself, we kept advocating for him, we knew he was in there. So it's really crucial. And then the other thing is, because I was kind of work there and stuff, I, he got a couple of unique things happened because he had very bad sepsis, it wasn't the head injury that was going to kill him, it would be the sepsis. And so they actually did a pooling blanket that they brought, they hadn't used yet. And they use that on him. And then they also use the rotoprone bed, I may have mentioned that before. But it was, they were always trying something innovative with him. And I was open to everything, you know, whatever works. So I really felt fortunate that way. Yeah. Thanks, Truman. How about you? I did advocate for Justin, with his feeding tube, they were given him formula that was milk based. And it was giving him gas and upsetting his stomach. And during, he was on the rehab floor by that time, and he would miss an hour or two, and he would miss an hour rehab after lunch because his stomach was hurting. And I pitched a fit and everybody who came in the room, the nurse, the child life specialists, the doctors, the CNAs, the nutritionists, everyone who come in his room, I would say, we've got to do something different about this formula. And I did that for like two weeks. And finally, the nutritionist came in and said, well, we have this new formula that's chicken based, would you like to try it? And I was like, yes, please. And that was the first time that Medicaid and the hospital agreed to cover this type of formula. And we went back for another surgery six months later. And they had told me they were like, well, we stopped this, especially for Justin. So on the weekends, they would bring extra up to get him through the weekend because it wasn't available to anybody else. And we went back and six months later for another surgery. And I was like, so he gets this special formula, and they're like, oh, we keep it stock now. I was like, all right. Yeah, I think with David, the biggest area that we saw not, I mean, once we were out of the, like the emergency part, his his focus became more about wanting to see his kids. And like I said before, they weren't allowed because they weren't 16. And it was cold and flu season. And so they weren't supposed to be in the hospital in the rehab, nothing. We had ended up getting permission for him to have an iPad because they didn't really want him on screens. And so we got the iPad, we did like FaceTiming with the kids, and that helped a little bit. But we did kind of sneak them in once. Of course, my kids are highly sociable, and they routed us out by going and talking to the nurses. But it made a huge difference being able to have that opportunity to see them. And they were kind of like, okay, just don't let us know that the kids are here. So when we you know, when they snitched on themselves, and it's like, okay, that was your that was your shot. But they really worked to find I mean, there's an area out was an area outside of the rehab that you could have picnics or, you know, sit outside. And we had already started planning to have a picnic where the kids could come, the dog could come and they could have that time and they were really the nurses were working really hard to find ways to do that for him because they noticed that it did improve his his mood a lot. He was also in a rope bed. He was highly offended because he felt like he was in a cage. But having the opportunity and thinking about the fact that he was going to get to be able to see the kids because they were coming up with some creative way for that to happen. I think that was super important for his his recovery for his motivation to do the things which he thought were really stupid. In all of his therapies, he thought all of them were stupid, because he's like, I know how to do these things. But yeah, when he he had to do them, it took him so much more brainpower and so much more effort to get those things accomplished. But he had that mindset of I know how to do all these things. These are stupid. So he wasn't super motivated to do anything because he already knew how to do these things. So having that the the plan in place to be able to come have the kids come and have lunch with him or whatever out in the outside in a which being outside was going to be a big deal because he's very much an outdoor person. But being able to have those things in place planned and whatnot, was huge to help him with that recovery. And I think that his care team recognized the importance of that and being able to get creative, even though the rules were they weren't supposed to be at the hospital, they couldn't be in the hospital, they could be at the hospital. So being able to have those kinds of things that just, I think the creativity that the care teams have to come up with to be able to really hit those things that are going to motivate and encourage both the caregivers and the trauma survivor. I think that is super important that they have those things in mind that it's not just about the medical, the medicine, but it's also about the emotional part of the whole family unit because everybody has a trauma. And in every single person, it's a little different. But being able to find ways to connect in those traumas helps us to be able to support each other so much better. And I'd like to say something really quick before we end because it's really important. Actually, the hardest part was when Zach came home. It wasn't in the hospital. It was much harder. He was manic. Okay, he was manic and he took off. He would take off in the car and I had to call the police because he was driving like a bat out of hell or a dump truck road. And I thought he was going to kill himself. And so that was actually the best thing that ever happened to him because they brought him back home. They had, the police worked with, what's that group that helps them, talks them down? They're psychiatric. A mobile crisis. That's right. Mobile crisis came to the house. The police brought him back to the house. The mobile crisis came. They sat on the floor. Mobile crisis was so good. Sat on the floor and looked up to him as he was sitting in the chair. And they were so wonderful. And they said, these are two options they gave. And you can either go with your sister in the car and then someone, the police will lead us and we'll follow so that they stay all together or you'll come with us. So he said, I'm going with my sister. So they took him to behavioral health. They put him in like a cell there because he was so manic. And the psychiatrist was wonderful. He pulled me in. He said, this guy's had a brain injury. He needs different meds. And he put him on a med for the frontal lobe and the temporal lobe at the time. He said, he's had two injuries. He's not on anything right now. He's just on, I think, I don't know what he was on out of it. I don't know. I forgot now anyways, but he put him on two medicines. He told me to call him in 24 hours and let me know if they were working because if they were not working, then he was going to see him again. So he said, I don't think it's going to take 24 hours. And certainly it was like he was back to his old self. It was amazing. It was amazing. And after that, we kept going back to the psychiatrist, not to rehab, to have the psychiatrist regulate his medications. And now he's just on one right now. So he's doing great. And he's working, guys. He's working. And he's keeping a job. Roto-Rooter. Well, this is good. I actually wanted to transition to outpatient. So let's talk a little bit about outpatient. So you did perfect. So tell me a little bit for the caregiver. I want to focus on you for a minute too. Because I do think outpatient story is important. So one, emphasizing that it wasn't just talking to a neurologist. It wasn't just outpatient rehab for you guys. It's integration with psychiatry and integration with other things that maybe you weren't recommended at the time. So for you, though, because I know this is something that we've talked about in groups before. What was it like for you continuing, even in the outpatient stage to learn more and more about what his needs were. It wasn't like you left the hospital and you understood everything he needed and you were done. And I know that CJ and Renda had similar experiences. So what was that like for you? Was it, I mean, I guess, did you feel like when you went home, right? It was- It was the hardest part. You worked out, it was just the starting. Yeah. Yeah. And so for the other, for CJ, Renda, what about for you guys? What was it like? What emotions were there? Do you feel like it was a whole new challenge, a whole new kind of battle when you got to that next phase? I definitely agree. While I had been told that there would be mood swings and everything, I was kind of, sort of prepared, but I didn't know how to prepare my kids. And a lot of the things that, I mean, the one thing that would trigger literally was my daughter coming down the stairs. She wouldn't have to say a thing or anything. And there was just something that triggered. My husband loves his daughter, but it would trigger him and he would be in like attack mode, yelling, not physically, but just yelling at her to the point where both kids were absolutely afraid of him. And we knew that, I mean, that was before we got into the support group with TSN, but we knew that, I knew I had to be looking for something and I was looking everywhere because I knew that we needed help. We didn't have anyone around us who really could help us to navigate as a family all the things that he was going through and being able to get resources, get connected with a brain rehab specialist who really took us on as a family and work with us as a family to know how to go through things, specifically me, how to be mom, how to be their shield at the times that I needed to be their shield, to be the referee, to be able to support him and to encourage him was important because I know had I ever videotaped it and shown him what was going on, it would have absolutely destroyed him because if he had seen anybody acting like that to someone else, he would have been enraged, but he doesn't even remember any of that time. So in this whole time he's going off and I mean, he knows what happened, he knows the damage that was done, but he doesn't have any active memory of any of that. He has little snippets of his time in rehab. He doesn't remember anything about his time in ICU or in the step downs. He doesn't remember most of his recovery that first year, but we do, we share those memories. And so finding ways to navigate that's a huge thing because they don't, my husband did not have the capacity to be able to consciously figure out stuff emotionally or cognitively in dealing with interactions within the family. Even in driving, there were times when, I mean, he wasn't driving for a while, but when I would be driving, some of the things that he would come around and talk about were like, wait, no, that's just not what we do. He got very impulsive, very aggressive at sometimes and sometimes just in tears. So that emotional rollercoaster, learning how to deal with that with someone who was pretty even keeled, that was a navigation that I had to learn because that wasn't who he was beforehand. So I think definitely being able to advocate, finding those services was absolutely crucial to us, his family, as well as him. But I think in that particular part of the recovery, I think the benefit was more pronounced initially in us as caregiver, as the kids, because at the time he wasn't recognizing any of that as a need for him. Yeah. Thanks, CJ. So Brenda, for you guys, I know your outpatient journey continues 10 years later, but so I'm trying to think how to kind of like sum it up a little bit. Maybe is there a word for you that kind of captures the experience, but also what's been most helpful? Have you had any experiences that really gave you a way to move forward or information that you were really missing as you kind of continue this journey 10 years later? Well, when they discharged Justin from out inpatient PT therapy, I was not happy because he did not reach his goals. And I felt like they were just like shoving him out the door because they didn't know what else to do with him. And so they did send us home with in-home help and therapy services that were supposed to come to the home. And that is nothing like inpatient rehab where he was spending hours a day doing rehab. Whereas this was like, they would come once or twice a week for an hour, but 30 minutes of that, they were tapping on their computer. And so, and then the OT quit coming at all. The speech therapist was hit and miss. So after a couple months, I was like, I think we need to go to outpatient therapy where he can get consistent services and so our first, people kept saying recommended pediatric places, but he was a teenager, he was 14. So he was kind of between pediatric and adult. We visited some pediatric rehab facilities and they were just geared towards preschoolers and they didn't have equipment that would fit his size. So we did wind up going to adult outpatient rehab, but I had to educate them on pediatric Medicaid that you can get more than six weeks of visits for him. He can come two or three times a week and you do not have to show progress in order to continue these services. You just have to show that he is maintaining or gaining ground. And I did have PT say, well, it's all in how you write your notes. If I say that Justin can sit up on his own for 30 seconds and in six months, I can say he can sit up on his own for 45 seconds, that's progress. And so sometimes I did have to educate the PTs. Yeah, you're not, yes, he's adult size. You are not dealing with adult Medicaid. He gets more services. And so that was a challenge. And also with the pediatric facilities, you go in the door and there was a step just as in a wheelchair, you can't even get in the door. So that was another reason. I more or less looked for the bigger hospital outpatient facilities because they were more accessible for a wheelchair. That's unfortunate. I really believe in, you know, we have to advocate for our children, for our relatives, whoever it is, and husbands, you know, as well. We really have to be advocates. And the more we fight, the more we get what we need to get. Zach actually went back through rehab. He needed it. He needed it. I said, he's not the same since he's come home. And so I really pushed to do that. And they approved it. I can't believe they did, but they did. They approved it. I said, he had a severe traumatic brain injury and he needs more rehab. And it was amazing. It was so much better than the home stuff when they come to the house, you know? He went back in again and I saw a huge, huge development at that point, especially with the speech therapy. You know, it's more of cognitive kind of therapy. It was amazing. The skills they gave him, they had him do different devices so he wouldn't forget. He had like a, and I think he still wears this like pouch and he puts things in it and he kept everything. And he has a carabiner where he has his keys on it and other things on it. So he has the carabiner and a pouch and he wears them all the time still to this day. So he doesn't forget his stuff. You know, it's amazing. But I'm a firm believer in the more rehab, the better. Oh yeah. I think my vocation as a teacher helped with my husband but he did have, his first psychiatrist was horrible. He saw her once a week and she never wanted to talk about anything happening in the family. He was begging to have me come in at one point and she finally agreed, but it was under duress. It wasn't very long after that that we were looking for something else. And so we, I mean, he totally like, we've got to find something else. I'm not being helped. He was, he even knew that he was not getting any better. And, you know, there is still time there. He's still looking to have that psychiatric kind of therapy because, you know, he still has a lot of emotional stuff that happens along the way. I mean, we're 10 years out, but he still has anxieties that he never used to have. He has reactions to things that he never reacted to. And so being able to have the guts, if nothing else to stand up and say, no, you're not helping him. I have to go somewhere else. I think it's so crucial, but unfortunately, I think in a lot of situations, I think people look at doctors as they know what they're supposed to do. And we don't, we're lost. We don't know exactly what we're supposed to be asking for. We don't know what services could be available. And so having people around who can share those information, who can share the fact that you do advocate for your loved ones, that it's okay to say, this is not working and I'd like to have a second opinion. I'd like to have a different direction. I think is, I think, you know, everybody gets into different situations, but not everyone is necessarily equipped with that personality or the confidence really to say, no, this is not working. You need to do better. Yeah. That's such a great point. I wonder, is there anything else for that idea that like, you don't know what you don't know and the advocacy piece, not knowing what you don't know and needing to know that what the resources are and continuing to need them as you grow and recovery continues and needs change. I wonder, in addition to all those things that you guys have mentioned, is there anything else about the TBI experience, the caregiver experience you wish you would have known earlier on that you've learned in all of this? I know when Justin transitioned from pediatric to adult, we talked to his physiatrist about referring us to a different physiatrist, maybe closer to home to do his Botox injections for his muscle spasticity. And we tried a more local office and just the lack of professionalism and stuff. I just, I have a very low tolerance for that now. I tell people I used to be nice, now I'm not. And so I called him after a couple months and I was like, this isn't working, we'll come back to Charlotte. And so he referred me to an adult physiatrist in Atrium News Network. And we went to see her for our first eval and she said, yeah, I can do Botox injections but he needs a brain injury specialist. And I'm like, why have I never heard of a brain injury specialist before? And so she referred us back to Carolina Rehab and we've been seeing Dr. Desai there, who's one of like three brain injury specialists in North Carolina. And so we've been seeing her for a few years and it's been great. But just with this last surgery with Justin, we went in for a pre-op. He was supposed to have the surgery February 28th and we went in on the 26th for his pre-op. And they were talking about doing the toes. I'm like, yes, but he's also supposed to do the gastroc tendon so that his foot lays flat. It's not just the toes. And apparently they didn't schedule the surgery right. And she was like, well, we'll have to wait until March 28th. And I'm like, no, we have literally scheduled our lives around this surgery because he has activities we're going to be doing in the spring and the summer and we're not waiting until March 28th. If you can't get us in, we'll go somewhere else. They call me the next day. We can do it the seventh. Don't mess with a mom. No, I don't think anyone should ever mess with Lorenda. She knows everything there is to know. What about you Joanne? Is there anything you wish you would have known earlier on? Well, I did have to have the courage to say he needs more OT. He needs more OT. And they were going to do it at home. And I said, no, it's not good enough. He needs to come back in there and do it because OT, you need the facility. And you need the specialists. And when it's home care OT, it's somebody that is like with a home care company and it's not as good. I just knew that as being a nurse. So he did go back in for OT a second time and that's really been great. He also saw a psychiatrist, which was very, very good as well because he had some mood stuff and things. And they were going to do it at home. And he saw a psychiatrist, which was very, very good as well because he had some mood stuff and things. And that was really good. And he's on medication for the frontal lobe still from that, but he's doing fantastic, fantastic. Yeah. Well, also another perfect segue. So as we go there, as we wrap up, where are you all and your loved ones today? Do you want to go first Joanne? So how's that? Oh, sure. Okay. Two foster and one biological. He has a wonderful wife that is calm and easy going. She's amazing. Absolutely amazing. He's so fortunate to have her. And he has a job. He's working for Roto-Rooter and loves it. And it's full time. Oh, he has two days off though. It's kind of nice. He's got, still has two days off every week. So far so good, which is really amazing actually because some jobs he hasn't been able to hold on to but this one he seems to be holding on to. And that's really wonderful. And they're really happy. And he actually, his daughter is in a Spanish immersion program and he speaks Spanish. So he goes to the school and he's like the father there or the whatever they call them. He goes on the bus trips with them and all that. He's really great dad with the school system. So we're very fortunate. Who would have thought? Who would have thought? Yeah. But he went back to rehab a second time, you guys. He had inpatient, then he went out outpatient then went back again to outpatient. And then it's been a long haul. We're talking about he's in his thirties now, I think 35, I think. Anyways, this happened when he was 21. So it's a long haul for sure. And it's trial and error and trial and error but he's very fortunate. Thanks Joanne. CJ, what about you guys? Where are you now? We're actually pretty good. My husband went back to work like three months after he got out of the hospital part-time initially, he went back to the same job and he's since changed jobs, but he's still full-time. He's still very productive but motivation is still one of those things that is it has to be something that he wants to do. Like if it's a my project, it will never get done with him because he's not invested in it. Not because he doesn't want to support me but it's just not something that he can he gets himself through. It might take a long time. Something that I didn't anticipate is we call it the revolving door. And if he gets focused on an emotion or a response to a particular trigger or just a situation there are times when he can't move past and see anything else and he gets stuck in that revolving door that goes around until he finally I mean, I can show him the door, the way out. I can show him a way to stop and maybe look at other things but it takes a while sometimes for him to be able to get out of his thought loop. Usually it's an emotional thought loop. And so it does take a long time. And I think that has actually gotten worse over the years and he recognizes it. And he himself has gone to search out people. He's having a hard time finding someone who is specifically for brain injury. So a lot of times the psychiatrists, psychologists they treat them like it's something different not that it's a traumatic brain injury issue. And knowing my husband it is definitely a traumatic brain injury issue. That emotional loop, that thought process loop that he gets stuck in. He will eventually get out of it but it does sometimes take a long time which is kind of infuriating sometimes to me because it's like, I gotta wait. And I don't necessarily always like to wait for him to get there because things need to get done or we need to move past something but something I am learning is I can't rush it. It's gotta be on his time. It's gotta be his process through it. And sometimes it seems like it's like quicksand to him where he's trying to slog through the quicksand to get someplace. Other than that, I think we're doing great. I'm the one who drives whenever we go anywhere as a family because he tends to have a hard time with driving. And especially if anybody else is on the road he still has road rage that he continually is working on. So he knows that and it's not even a question when we go somewhere I drive or my daughter drives or my son drives. So I appreciate that he knows some of his triggers and he knows what to do with them. But the challenge right now that we are going on is not a physical health one. It is getting through the emotional loops. Thanks CJ. And Renda, where are you guys now? Well, in a few weeks, Justin will be going back to the gym two days a week, PT one day a week. And we try to keep him involved in adaptive sports as much as possible and improve the quality of his life and give him something to look forward to. Just keep trying to build that muscle to counteract the spasticity and stuff from the brain injury. Well, and all three of these ladies are incredible volunteers for our program and both them and their loved ones. So Justin, David, Zach have all participate as well in our program, giving back to other survivors who are a little bit earlier on in their journey. So with that, I'm so incredibly grateful for all three of you. I'm just so blessed to know you and hear your stories. And it's incredible after all these years, how much I still have to learn as a provider. And I know everything you guys have shared will be so incredibly helpful for other providers around the country. So thank you for taking your weekend morning with us today. And I just appreciate you so much. Thank you. Thank you. Thank you so much.

traumatic brain injury

TBI recovery

caregiver experiences

hospital support

emotional resilience

advocacy

specialized care

family dynamics

healthcare communication

support network

rehabilitation

community support

long-term recovery