Share The Struggle
Share The Struggle
Benign Myoclonus Of Infancy 246
The moment you notice something isn't right with your child, your entire world shifts on its axis. For us, that moment came when our six-month-old daughter Paisley began experiencing strange head-dropping episodes that would ultimately lead us on an unexpected 72-hour journey through fear, uncertainty, and eventually, profound relief.
What started as a routine Friday quickly spiraled into a whirlwind of medical consultations that left us caught between two drastically different opinions. Our trusted pediatrician assured us these episodes were merely developmental—a six-month-old's muscles still learning to support a heavy head when tired. Meanwhile, neurologists reviewing the same footage urgently directed us to the children's hospital, using words no parent ever wants to hear: infantile spasms, potential epilepsy, developmental concerns.
The hours spent in Barbara Bush Children's Hospital were simultaneously endless and fleeting. Watching technicians attach electrodes to our baby's head while she looked at us with confusion and betrayal tested every fiber of our being. Yet through it all, Paisley remained remarkably resilient, smiling and charming everyone who entered her room, becoming the unexpected bright spot for hospital staff during their difficult shifts.
What this experience taught us transcends the medical diagnosis. When you're sitting in a hospital room, staring at your child connected to monitors, everything else in life—work stress, financial worries, petty grievances—simply evaporates. We found ourselves making silent promises to give up absolutely everything if it meant she would be okay. The profound clarity about what truly matters in life is perhaps the unexpected gift hidden within this terrifying experience.
We're sharing this intensely personal journey because we know someone listening needs to hear they're not alone in their medical uncertainty or parental fear. If our story helps just one family feel less isolated during their own struggle, or encourages someone to trust their parental instincts, then exposing this vulnerable chapter of our lives will have been worth it.
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The past 72 hours have been an emotional roller coaster for the Liberty family. A routine day with Paisley spirals into multiple calls and messages with medical professionals, resulting in a weekend spent at the children's hospital. We get through it all with faith and positivity. That and so much more. On today's episode of Share the Struggle podcast, let me tell you something. Everybody struggles. The difference is some people choose to go through it and some choose to grow through it. The choice is completely yours. Which one you choose will have a very profound effect on the way you live.
Speaker 2:your life will have a very profound effect on the way you live your life. If you find strength in the struggle, then this podcast is for you. If you have a relationship that is comfortable with uncomfortable conversations uncomfortable conversations challenge you, humble you and they build you.
Speaker 1:When you sprinkle a little time and distance on it, it all makes sense. Most disagreements they stem from our own insecurities.
Speaker 2:You are right where you need to be Back on time. We can back once the whole day gone, but we're behind, ooh, ooh ooh, ooh, what it do, what it hot Did-a-dee-do.
Speaker 1:Good Lord, almighty, am I so excited to be back with you? Oh, it's true, it's damn true. And right now it is dumping snow outside. Can you see that from where you're at? Mm-hmm.
Speaker 3:Wow.
Speaker 1:Yeah, those are big flakes. Big flakes right there, not referring to dandruff or that's gross or flighty people. We got big flakes right now. We are thankfully recording today From the comfort of our own home, which feels even more comfortable After the past few days we've had Thank God and we are just Watching Mother Nature.
Speaker 3:From the seat of our couch.
Speaker 1:Yeah, the old doodling couches have come in handy for today's episode of the podcast. Y'all might be a little bit surprised by the intro to today's show, the B-roll. If you would can imagine how surprised we were to live through what we just went through this weekend, or shall we say grow through what we just had to grow through. What a what a time, what a difficult time for us. As we mentioned, it's been an incredibly challenging 72 hours or so. It's really been a roller coaster, but you can tell by the sound of our voice that we're feeling rather optimistic at this moment. But without jumping too far ahead, I think it's important that we just kind of set the scene and paint the picture and pave the road and tell the story that needs to be told. What do you say?
Speaker 3:Yeah, let's share it.
Speaker 1:So Friday we're going to the the curtain back to friday and uh, it was a. It was a routine day on friday. The only thing that wasn't routine about it is that paisley's routine was a little bit, a little bit different, and that's one of the reasons why, um, I kind of read the room a little differently. So on Friday all of us kind of got up to do our thing and when you left to go to work I had loaded Paisley up in my dad's truck and brought my mom to get her hair done. So we dropped Mima off at Anne Marie's to get her hair done and me and the baby just kind of went on about our day. So typically on a Friday she would get up in the morning, you get ready for work we'd do barn chores, stuff like that, and then you know she would have a bottle and kind of ease into the day and then maybe go get coffee with me, ma, and then, because it's Friday, she would go to me Ma's house and spend most of the morning and afternoon there and I would go up and check on her from time to time, but it's one of the days where I can work from home. So it's kind of Meemaw's day with Paisley.
Speaker 1:But Meemaw had an appointment. So this morning her routine was a little bit different. So she got up and she had her breakfast in the car seat on the way to drop Meemaw off. And then when we got home, because her morning was a little bit different, I decided let's just get you playing and doing your doing your thing so that you can have a nap before a Meemaw gets done her appointment. I was just trying to time the schedule and so we went right into right into playing so I put her in her little, her little bounce zone. We call it. I think that, lady, we picked up one of those I don't know what the technical term for this thing is.
Speaker 1:It's like a jumper with a surrounded by activities and stuff that one lady gave us one of those and she mentioned it like the circle of neglect or something I don't know if she called it.
Speaker 3:Circle. Of doom it wasn't doom.
Speaker 1:You added that yourself. It was the. Don't call it neglect. That sounds terrible. Oh, that's what they call it. Because they don't have to, you could drop the kid off and let them do their own thing and you can go about like your own business. That's what this lady had kind of phrased it as. But anyways, we got these things all over the house. We've got a couple here, we got some of me, ma's, she loves them, basically gets in and bounces around, does her thing, loves her, loves her time and those, and that's one of her favorite um little, you know, just fun zones yeah so I set her up in that she's having a blast.
Speaker 1:I'm trying to get some things set up, I'm getting her her nap area set up, getting all of her toys out, and she's jamming hard and fast and I'm, you know, sitting in front of her, kind of playing with her, and I noticed that she started to drop her head and um, when she did. Originally my first instincts were because she loves to put everything in her mouth. At this stage, the like um play area in front of her had some blinking lights and music and stuff and I thought maybe she was going towards her to try to try to eat it, try to lick it, try to claim it as her own right marker territory exactly so.
Speaker 1:When this um happens the first time, I was like oh, she must be trying to get to that. And it happened a second time, like real back to back, and I thought she was trying to get to like the blinking lights. And it happened a few more times and, um, it seemed kind of odd to me but I chalked it up as this kid's really tired and our, our child has the worst case of fomo, which, for anybody that doesn't know what that is, it is the fear of missing out this kid has to be involved in every single thing.
Speaker 1:She fights sleep to the points of exhaustion because she thinks that she's missing something If there's anything remotely cool going on, she does not want to sleep, and what she defines?
Speaker 3:is it doesn't even have to be fun.
Speaker 1:Yeah, her definition of remotely cool could be two people talking, you know what I mean. It could be two people talking, you know what I mean. It could be lights in a store, it could be a program on TV. It does whatever she, if the dogs are moving around quickly, like a little more quicker than expected, that's fun. I got to keep an eye on this.
Speaker 3:She'll be laying down like in that position, like half eyes closed. The dog will walk by and she, like full undertaker, sits up straight what the hell's going on here. Looking around, like what the hell's going on here?
Speaker 1:looking around like I gotta do something. I gotta be a part of this, don't leave me out. So this kid, when she's having a blast, she definitely doesn't want to shut it down. She's uh, she's all gas, no brakes. She doesn't want to take a take and shut it down. So, um, I'm like, okay, you're, you're tired, but it was kind of a flag of like. That seemed weird. I've never seen you do that before. She dropped her head about five or six times in a row. But I picked her up and immediately she went to rubbing her eyes. Her eyes were red and she looked like she was really tired. So I set her up for a nap, got her a bottle and very quickly after you know her fighting with me she went to sleep and, um, we went on about our day and our routine and everything was fine and, um, it never came back again until later in the afternoon, I think.
Speaker 3:Actually you got home a little early yeah, I was feeling like shit, so you got home a little early and we were all at me ma's house and then uh you kind of um witnessed it again, if you want to explain that yeah, so it was like 2, 2, 30, 3 o'clock I think it was the time frame, um, and she was sitting on the couch and I had asked, like when her last nap was and if she had had a couple of big naps or if she had had a big nap in general.
Speaker 3:And she had not. She had had a couple of like small 20 minute naps, 30 minute naps and I think 145. Me ma had said and that was really it which normally for her, since you've been back, would be like an at least one hour nap, if not more than an hour. Um, and so at that point, like I'm sitting there like talking to her and I see her do that head drop again, and when we're talking about a head drop, it's like very similar to like when we're sitting on the couch or you know you're dozing off and your head kind of just like drops down, like like an uncontrollable yeah like I had kind of painted this picture over the weekend.
Speaker 1:I was talking with finnegan and um, I said you know what, if you put me outside, maybe eight beers deep, on a sunny day, 9, 30 at night, I'm trying to get through extra innings on a yankees game and uh, fighting to keep my head up and they're trying to take the remote away from me like that scenario right like your, your head starts falling down when you're kind of like scares you to being awake, that type of that's what it kind of looks like yeah.
Speaker 3:So, um, I had noticed her do it one time and I was like, oh, what is that? And then I had continued watching her because I was like that's strange. I never seen her do that before. And she was like just playing, acting normal, like nothing had even happened. And I was like, oh, maybe she's tired. And then, like seconds after, she had done it like repetitively, at least four or five more times right in a row and I was like, wow, that's really strange.
Speaker 3:I ended up picking her up and was like holding her and I gave her a bottle and she ended up like falling asleep in my arms for I think like 20 minutes or so 20, 30 minutes, yeah, probably. I think like 20 minutes or so 20, 30 minutes, yeah, probably. And then when she woke up, she had been sitting on me and then did it again another like four or five times and I was like, okay, this is not right. Like this scares me.
Speaker 3:I actually ended up taking a video of it because I was like I don't really know what this is Like. I don't think that this is someone who's just really tired and just keeps dropping her head, because she's doing it in a repetitive motion, as if to be like like a spasm or like a Tourette kind of thing, like I'm trying to like run through neurological things as I work for neurology, like what could this be? Um. So I ended up actually um sending a video and a message over to the pediatrician and I was like this doesn't seem normal to me. Mind you, it's like three o'clock on a friday afternoon. They don't want to hear from anybody.
Speaker 1:let's just be honest I think we're fortunate enough that one of them was at our wedding.
Speaker 3:Yes, yeah, the RN, one of the people at the office. Yeah, the triage RN.
Speaker 1:So Christine being there, I think things get answered. Oh for sure, without that they probably wouldn't be For sure For sure.
Speaker 3:So we send it over and you know instantly Christine gives me a call back and she starts asking like 21 questions, like is this normal? Do you see this often? And I was like no, this is the first time. Dad had seen it this morning around nine o'clock, and that was the only other time that we had witnessed it. So she's asking me like a bunch of questions. She's like all right, I'm going to go to the doctor. Your doctor's not here, but I'm going to go to the two providers that are here.
Speaker 3:And so in the meantime of waiting for Christine, I start like Googling, which I never recommend. I work in the healthcare field and I never recommend Googling. But I need to get some answers. I need to see what exactly this head drop is going to point me in some sort of direction. So when I use Google, working in the medical field, I'm not looking for a diagnosis, I'm looking for things that may cause a head drop. So I'm looking for diagnoses that are coming forward that are saying like, all right, it's going to be A, b or C, and that way I can look in some sort of direction.
Speaker 3:So, to my surprise, reddit was there, coming in clutch, stating that a lot of children at Paisley's age being six months had parents had seen this head drop thing before and they were marking it as they noticed these things happening after the children had their six-month shots. Well, she hasn't gone in for a six-month shot, so I like chalk that up. I was like nope, can't be that Can't be affected by the vaccines. So what other options do I have here? And then other people started mentioning infantile spasms. So I'm like, okay, that checks out. It's a head drop, a couple of times pretty repetitive, that could be a spasm. Fell into a rabbit hole there. I copied and pasted that into another Google browser and started looking into infantile spasms. Well, if you don't know, infantile spasms actually breaks down to epilepsy. Boy did I fall into a rabbit hole? And I was like, oh fuck, here we go, like this is scary. Now Like, but of course I'm not. I'm waiting for the pediatrician to come forward. Call me, what have you? So I'm still reading.
Speaker 3:Lots of people say that they send their kid the they outgrow it. Other people are saying that they put their kid through an EEG and an MRI and just a list of different things. Some people are saying don't do it, don't put your kid through an EEG and an MRI and just a list of different things. Some people are saying don't do it, don't put your kid through an EEG and an MRI at that age. It's terrifying. Other parents are like, oh, just let it ride, it'll be fine, the kid will outgrow it, what have you? So finally I get a call back from the pediatrician and at this point it's, I think, like almost four o'clock at this point by the time we finally get an answer back.
Speaker 1:Yeah, it was easily after four.
Speaker 3:Yeah, so I'm like all right, like we're barking at four o'clock and I'm like it's four o'clock on a Friday, like I'm probably not going to hear anything. Like if it was a concern, they would call me like immediately. Well, they called and one of the providers who had watched the video, um, was like oh yeah, no, this is normal. I see this all the time. Um, this is actually um a developmental underdeveloped six developmental issue.
Speaker 1:Yeah, basically traditional underdeveloped six month old, not saying that she's not developing at the right pace, right, but just saying at six months old you're still developing muscles and you're still trying to hold your head up coordination and you got a big squash.
Speaker 1:You have a hard time keeping it up. Yeah, if you're more tired, it's going to be even harder to keep it up. Yeah, which was right in line with what I felt in the morning and that's kind of what I was hanging my hat on until I saw it again. And then you kind of went down this, this journey that we went on and, um, my original instincts were like she's just overtired and can't keep her damn head up, which they agreed with that. So we're like, okay, well, she needs a nap and we're good here.
Speaker 3:Yep, and so we just we took it at that and didn't really think much of it. In the meantime I, like I said I had sent the video over to the pediatrician, but I had also sent the video over to one of the neurologists that I work for and honestly, I didn't know like to me it looked like it could possibly be neurological a concern. So it was like all right, let me have the neurologist look at it. She deals with adults, so she didn't really feel comfortable putting any sort of like exact concern or diagnosis on it. She's like let me send this over to one of the neurologists pediatric neurologist that also works for our company and so she had done that, and while we're waiting for him to respond, she's basically like yeah, I don't know, like I don't want to scare you or get you all worked up, don't you know who knows? Let's see what he has to say.
Speaker 3:Um, and so we just went about our business. I went to walmart, got stuff for dinner, like, took her with me, like, didn't see it again. She was taking a nap and um, and we were, we were good we had ended up, um, going for like an hour drive to make sure that she got like a big nap in because she fell asleep in the car.
Speaker 1:Well, that hour nap happened after you got a phone call. You got a phone call while you were in Walmart.
Speaker 3:Oh, yes, yes, you're correct. So that's right. My bad, these 72 hours just kind of mesh together. Yeah, so I did get a phone call while I was at Walmart and it was the neurologist, and she basically said that the pediatric neurologist was very concerned and was looking at this being infantile seat spasms, also known as epilepsy, and wanted us to be evaluated immediately like wanted us to drive to Portland, be like seen at the ER, because that provider who reviewed the video, the pediatric neurologist, was actually on call at the Portland Hospital at Barbara Bush.
Speaker 1:Portland Hospital is like our biggest hospital in the state.
Speaker 3:I think right Yep.
Speaker 1:And the children's hospital in there is known as the Barbara Bush.
Speaker 3:Yep, it's the only children's hospital that we actually have here. Yeah, it's state of the art, like it's the big, yeah, they have doctors that fly in from all out, like out of the states, like to work here like it's so.
Speaker 1:It's a Friday night and I was outside doing the barn chores and you came home and I could tell when you were coming across the field that you were shaking up and yeah and I kind of started freaking out like what the hell are we talking about here? Why would we? I thought we've already covered what this is you? Know, and uh.
Speaker 1:Now we have this specialist saying like you need to be seen now and they're basically saying you know you should be here right now being admitted um at Barbara and then, as soon as we have the opportunity to put an EEG on, we're going to go through with this testing Because they were concerned that these infantile spasms could be rather damaging and the sooner you catch it, the better off you're going to be.
Speaker 3:Yeah, they said that. If that's the case, then they actually like to start the children on the treatment plan within like 48 hours of.
Speaker 1:Yeah, they want to be on this as soon as possible. Your likelihood of um like recovery or um you know, increases your chances of um overcoming this stuff. The sooner that you can you can get to it. So we now have two pediatricians telling us she's fine, don't worry about it. We now have two neurologists saying you should be at the children's hospital. And then you have you, me and my mother trying to figure out what the hell's going on. At this point, paisley just falls asleep for a nap.
Speaker 1:And I said this kid needs a nap.
Speaker 1:just falls asleep for a nap and I said this kid needs a nap let's go for a drive so we drove around we drove around all of kenny, bunk and arundel and lyman and dayton drove around for an hour just let her sleep yeah, and she got a good nap and, as we talked it all out, um, I think we were firm believers that we don't want to hold anything back when it comes to taking care of our child, that we're not going to keep her away from something, but we're going to go with our own instincts and intuition at the moment and say that we know our child, her routine was different, she was tired, she hasn't napped, she clearly needed a nap and we're going to see how she reacts and, um, you know, we're going to kind of see how things go and at least give her the benefit of the doubt of the night and see, you know, for ourselves here, and to not really overanalyze every single thing that happens, but to kind of take it all in and you know we talked to and back and forth on our decisions for the whole hour.
Speaker 1:We drove her out. Yeah.
Speaker 1:I think that I just truly felt in that, in that time that you know we need to see more before we can make this decision and, uh, she took a nap, came home and she was fine the rest of the night.
Speaker 3:Yeah, she was eating, she was playing. She took a nap, came home and she was fine the rest of the night. Yeah, she was eating, she was playing, screaming at us Just playing.
Speaker 1:We never saw her again.
Speaker 3:Talking Not screaming like she was mad, but talking. Yeah, we didn't see her again until we went to go put her to bed and she did one head drop, but it was checking out.
Speaker 1:It was right around the time that she she's tired, she immediately goes to rubbing her eyes. So that almost confirmed to us. Okay, when she's tired, this happens and this we're going to be fine here. So we all went to sleep and in the morning, um, I think I was changing her and doing stuff and you were outside doing chores and you got another phone call yeah, the neurologist um had called.
Speaker 3:Um called me and said, hey, not to scare you or anything. But the pediatrician neurologist that was on call actually called me this morning and was really concerned that you guys were not there at Portland Hospital and I said, well, to be honest with you, we haven't seen it since. Well, to be honest with you, we haven't seen it since and we don't really know, like, what the right avenue is. Like we don't want to, we don't want to run every single time something looks different, but we want to also do what's right for her. And she was like I can understand that 100% she's like. But I can tell you right now there are two neurologists that are looking at these videos that are concerned enough to call me on a Saturday to ask me why your friends are not here and they're on call. They're not going to make more work for themselves if they think it's a Saturday morning.
Speaker 1:It's a Saturday morning.
Speaker 3:Yeah, they're not going to make any more work for themselves if they don't have to see a patient. Like they were genuinely concerned about what they had seen and wanted us there immediately. And so I had come inside and just basically like said to you like hey, listen, like I still don't know what to do, I don't want to make any decisions on my own, but the phone call that I just got was from the neurologist and the pediatric neurologist and they want to see her now. They want her there at the emergency room and the EEG techs are only there until noon and if we can get there, they will hold them there and have her hooked up. That's how concerned they are.
Speaker 1:For people to understand too. This EEG test basically there's a bunch of little electrical, like little wires, that get glued to your head. I mean, I don't know 15 or 20 of them, basically right.
Speaker 3:On each side.
Speaker 1:So it's all over the place. There's a big trail of wires that get plugged into a box that you know gets attached to you. Um, that gets kind of all wrapped up on your head and it's a 24 hour minimum on this test because they want to see your brain activity in the daytime, processing things, how you, how your brain works when you're taking naps, when you're sleeping at night, when you're eating, when you're playing and then when these events happen.
Speaker 1:So so they do the test for 24 hours with a child. It all has to happen there with a camera on the child, so they're being videoed at the same time and it's a 24-hour process. So when you were reading the day before all these things, people are saying like don't do this, don't do this to your kid. So in the back of our mind we're thinking about this too. But when we now have, you know, a neurologist calling on a Saturday saying like we're expecting you to be here this is serious.
Speaker 1:We need to see what's going on. At that point it's out of our hands. We have to go do this and like, like you said, you know we want to do what's right decision is. So, um, we headed to uh, to the hospital.
Speaker 3:Yeah yeah. We headed to the Portland um hospital. Um walked in through the ER, um, as we were directed, um did a couple of name drops for the neurologist because they were expecting us. Um, and the staff downstairs was, I'll tell you they were really quick. They were really quick when it came to me walking in, because you were parking the car and I was walking in with a newborn or a baby, uh with uh in a carrier by the time I had the car parked and came inside, you guys were two minutes away from being done with your whole check-in and we were going to a room yeah, which is?
Speaker 3:I mean, I don't know about y'all but, or where your ER is. But that's's pretty quick, that's pretty stat.
Speaker 1:Put it this way, my dad showed up at the ER bleeding and having a heart attack dropped off. You know, literally had, you know, the ambulance, call it in and you guys waited in the lobby for hours.
Speaker 3:Yeah, for five hours and then we got a room. Yeah, so we're talking about having a room in you know five minutes and they also have like an adult wing and so like, when I like name dropped the neurologist who's on call, like, they immediately pulled Paisley's record and was checking the notes and he had already put notes in there at 9 am and we were not even there. We got there at like 11. He already had notes in there and was already messaging the pediatrician telling them that they were absolutely wrong. This is a concern. This is not just your standard um six month old who can't hold her head up like they. He was on it. He was that concerned. Um, so, yeah, we get into the room and this doctor walks in who's what, like eight feet tall, like, oh yeah, that guy was huge, oh my god.
Speaker 3:I mean, he's not eight feet, but he was at least seven he's at least seven feet at least seven feet tall. He had to duck to get in the door and of course he's dealing with children, so how intimidating is that fucking jack-o'-lantern stock well, paisley's not intimidated by big people no, but uh, yeah, he walks in like, checks out, like um they all loved her, everybody in that whole process everybody yeah.
Speaker 3:so they came in um and was yeah, you know, I'd really like to, I'd like to admit her. And here's what's going to happen. Like she's going to get admitted and they'll do an EEG on Monday. And I looked him dead in his face and I said absolutely not, it's not going to happen. I said I've already been talking to Dr Heiss and he is expecting her. He said specifically that he was holding the team. He wanted us here before noon. I'm not holding off. We are not going to sit here until Monday. It's not going to happen. That's going to put her out of her element. That is going. She's going to get uncomfortable. We're not doing it. If you're going to hold her here until Monday to do that, we're leaving. We're not doing this. And so, like he had left and like, oh no, he had, he had left and then came back with the supervisor to tell us that they were admitting she got two two-thirds of a word out of her mouth and got bitch slapped back she said monday space.
Speaker 3:Yeah, she said monday and I said you better take your fucking monday ass right around left the room and we're like, okay, well, there's that, yeah no, I was.
Speaker 3:I was standing 10 toes down on business. I am not going to let my daughter sit here until Monday, when I know for a fact that I am talking to two neurologists on the back end that they don't actually know about that. That neurologist is waiting for us and so I was not taking that as an answer. So that neurologist, dr Heiss, actually came down, spoke with us, did an exam and I showed him the video, showed everybody the video, and he had run down infantile spasms and what to expect. You know what the outcome could be. The cause of it Like he went over everything.
Speaker 1:This is when things begin to become extremely scary for us.
Speaker 3:Yeah, extremely serious.
Speaker 1:Because all signs based off of what our conversation now point to these infertile spasms. And this begins the long road of developmental issues where you don't know what they're going to be. This could be learning disabilities, it could be motor skills disabilities, but it's going to have some kind of effect. And his thing is saying, like the best case opportunity or best case scenario for this is finding this as quickly as possible. And he said this is an extreme case for me because you guys are here within 24 hours of the first signs of these seizures this doesn't happen.
Speaker 3:Yeah, he says I usually see patients at, you know, three months in and you know the the pediatrician will be like, oh, what was that? Like they're doing some sort of episode. And the parents will be like, oh yeah, they've been doing that, like didn't think anything of it. And then they have to go start the process and basically backtrack and like try to get the treatment necessary to basically fix the last three months.
Speaker 1:He tells us that you know we would administer an EEG 24-hour test, possibly 48-hour test.
Speaker 3:If we couldn't get the episodes, if we couldn't get the episodes to happen.
Speaker 1:He needs enough data. Couldn't get the episodes to happen. He needs enough data upon those results. If they determine that this is what's happening, then, um, they would schedule an mri where she would have to be put under anesthesia yeah, because she can't sit still that long to determine, you know, what areas of the brain are affected, to then decide on the best course of action for medicine, most likely a steroid. And he says we want these things all administered, this medicine to be administered within three days of the diagnosis. Like we want to be on this. That is our best case chance of trying to defeat this or to slow this, but even so, the success rate in medicine is 50% to 60%.
Speaker 3:Yeah, it wasn't very good odds.
Speaker 1:The best case scenario was a 60% chance of this making a difference. And he said you know, I think we could be looking more towards that higher percent chance based off of how soon you guys have found this, yeah, this, yeah. But um, to start hearing the, you know the words of epilepsy and developmental issues and disabilities and um, like, everything just starts to, just starts to punch you in the face at that point yeah and so, uh, as he's going over all these things, he says you know, I want to admit her and we'll start the process.
Speaker 3:And I called him on it and I said, well, they just said Monday. And he was like, absolutely not. He's like I have an EEG tech with her name on that list right now. There's a possibility that they can hook her up today, if not tomorrow morning by 8 am. She has a bed upstairs waiting for her. He's like I have him holding it. And again, if we just circle back to the fact of like we were in the emergency room and within five minutes we're in an ER room, and now it's been at least a couple of hours of the providers coming in and doing their, doing their evaluations and forming a game plan, and now we're right upstairs and have a bed.
Speaker 1:Like this is very quick turnaround, one of the most difficult areas probably, you know, in the state to get a bed, yeah right yeah, because it's.
Speaker 3:It's the only children's hospital in our state and there's never a bed open. And if there's a bed open like I, looked at you and I was like we have to do it. We can't hold.
Speaker 1:I could schedule you for a time even at 8 o'clock in the morning, but he's like it's RSV, like flu season right now. Kids come in here tonight and get admitted even for a flu. We're not going to have a room and then I'm writing referrals for you to get a test and then now we're talking that it could be a week.
Speaker 3:And I know how neurology is in his office because I work for the Biddeford office and so I know for a fact that I mean I understand that children are different, but I know for a fact that they are booking six months to a year out in Scarborough. I know that because we have their patients call us our office all the time. So, like I am not interested in holding out on a referral, as soon as he said referral for a neural, I'm like nope, not back up, we're not doing that. So I was like we're doing it, like if you can. I was like if you can promise me that she'll be hooked up by tomorrow, no matter what, by 8 am, if not today, then fine, we'll do it, we'll do it. And he was like, okay, then we're doing this like we're gonna, we're gonna get upstairs, we're gonna get her all checked in. They may come um and and hook her up.
Speaker 3:And by the end of the conversation he did come back and say, unfortunately they're not. They do not have her on the list. There's just been too many patients ahead of her. Mind you, that EEG tech had already been over her shift by like three hours and they were still trying to get Paisley on the list. They were supposed to be out of there by noon. That was like nine to noon is the only time that they were supposed to be out of there by noon. That was like nine to noon is the only time that they were there and we were getting upstairs at three o'clock and she was just leaving, like she had not had the opportunity to to hook Paisley up, but 7.45 the next morning.
Speaker 1:She was in there.
Speaker 3:She was in there, yeah, so to get back to our Saturday at the hospital.
Speaker 1:They bring us up to the Barbara Bush Children's Wing and we get settled in there and it was just such an odd feeling.
Speaker 3:Oh, I walked in and I started crying because the the bed they have in there is so heartbreaking, because you always see those pictures of children who are so sick.
Speaker 1:Yeah, and they're in those, those chambers, and I was like just knowing that we're on that wing um was was difficult and um thinking about the possibilities of this maybe becoming a regular in our lives and those things was all just kind of weighing on me and I kept trying to trying to push that out and I also kept thinking about the children that I think about on that wing and telling myself that we don't belong here.
Speaker 1:You know, she's too healthy for this. We don't belong here. I feel like we're taking something away from a child that needs it, like I was going through, like guilt and denial, you know the whole time. The last time I was on that wing was many, many years ago. My cousin, tammy and Howie, their little son, had been on that wing and spent quite a bit of time there.
Speaker 1:Shortly after birth they wanted to do something as a thank you. We raised all these turkey points. They used to call it back in the day, shaw's used to. You spend so much money. You get points towards, like thanksgiving dinners, like all this. You know the whole fixings, the whole nine.
Speaker 1:So we ran this campaign to save as many of those as possible to feed the barber bush wing for thanksgiving and, um, it was tammy's idea and and we collected all these turkey points and mom worked at shaw's and we had so many turkey dinners, you know, full turkeys and all the fixings and everything. And I remember going to the hospital, you know, in the morning on Thanksgiving morning, you know, super early, and rolling in there and setting up tables and and just putting out this whole spread and going into children's rooms that, um, you know couldn't come out to have dinner or to go talk to them and I remember sitting down and playing video games with a kid on his bed and just my image of that place was I don't know man, 25 years old, right, and to think about the heartache and the things that those kids went through and like it was hard. It was hard to process that we're there. You know what I mean, yeah.
Speaker 1:And, um, one of the things that, um, I kept thinking about is that my timeline has been full of friends that they're they're battling issues with their children. You know, you have, uh, we have like family of family that's going through it, you know, and friends and acquaintances and like I don't know, I don't know how to really put this out there, but we've been extremely private and quiet about this situation. We're sharing this on the podcast because this is the deal we made with this show.
Speaker 1:This is the obligation we have to the listeners and to our daughter that we're always going to share these things because there's strength in this for somebody right, absolutely.
Speaker 1:And there's going to be somebody listening that's going to go through this or deal with this. That's why we're doing this, but we haven't we've been private about this. You know, nobody really knows about this until this episode comes out. Um, part of the reason for that in my justification in my mind, was that, like I, I didn't want to put it out there and and wrongfully take attention and prayers away from somebody that needed it I don't know if that sounds funny to people.
Speaker 1:You know what I mean. But like to me, I was like if I were to post right now where we are and what we're going through without knowing anything. That's basically just like taking attention. Does that make sense?
Speaker 3:I also didn't want to post because I didn't want to be flooded with a bunch of text messages and Facebook posts and stuff like that. Like, my attention was on her the entire time.
Speaker 1:I wholeheartedly just wanted to put all my energy into her.
Speaker 3:And that place sucks the energy out of you like just watching our little girl go through whatever she's dealing with, the uncertainty of like what the outcome is, and you know, having them come in and like, poke and prod her, like just I mentally did not have the capacity to eat, I didn't have the mental capacity to sleep, I didn't have the mental capacity to sleep. I constantly would just stare at her and and wonder why, and and just pray that everything was going to be okay and that you know we're strong enough to to come out on top of this. And I mean it's okay, like that we that we post and or not post, but talk about it now and and people want to reach out because we're home now.
Speaker 1:Yeah, it's different. I think all of our energy had to be given to her. Like you said there was no. It was weird to explain there was no energy for anything else.
Speaker 3:Like so much so we left the tv on the same channel for hours and it was like not, it wasn't even like cartoons, like either one of us even wanted to watch it I didn't, it was just noise in the background that you know. We're just like you're just staring at these four walls, that, and your and your daughter in in this crib, and you're just like I.
Speaker 1:I don't even know what the right thing to do what the right thing to say is, at this point like, neither one of like, neither one of us spent much time talking to one another, like we just didn't know I think my mom was with us too, and I think the three of us really were just processing on our own and, um, you know, other than like me and my mom walking downstairs to get food for us or something like there was not, I don't even know how to put it like to your point like we just weren't talking. We weren't, we were all just processing and and trying to figure it out. Occasionally, one of us, you could tell we'd all been thinking about things for hours, cause, you know, a couple of hours would pass by and then one person would open their mouth about something. You know what I mean and then that would, but it was, it was.
Speaker 1:It was tough, I mean, when time came to um bring my mom home and do the chores for the night.
Speaker 1:Like it was so incredibly difficult to leave the hospital you know, and um, like you kept telling me like nothing's gonna happen tonight, you can stay home, and I was like you're absolutely out of your mind if you think I'm not gonna be back here. Like, yeah, you know, as soon as you begin to pull away, it just like it just starts to eat you apart. And, um, I did everything I could to remain positive and we're going to talk about that. That that's really all that you could really do. And to continue your point on not having the energy for anything, like I came home and I said we could be here for a few days.
Speaker 1:We could be here until Tuesday, whatever you know, so, um, I packed my computer for work, my notebook, my, my calendar, uh, some some journals, a Bible, like everything, to keep myself busy and to keep myself focused and, uh, none of those things made it out of my bag. I was so emotionally and physically drained in that hospital that it's mind-numbing, Like you don't move, you just sit there and you don't move and the next thing you know you're just staring at a clock. It's weird. Unfortunately, when I was driving back, that's when they came in and started trying to do blood draws and stuff.
Speaker 1:And I know that wasn't good. No.
Speaker 3:They had to do a standard blood panel. They were checking metabolic panels and a full CBC, so a complete blood count, rightfully so. They had checked glucose, so we're checking her sugars. So they had to do a couple of heel sticks and if you've never seen a heel stick happen before, they basically take a needle and prick your heel but unfortunately, like your veins, when you prick the heel you have to continuously squeeze the heel to get drops of blood to come out. That's not an easy process for a baby. It's not like they could put, you know, a tourniquet on and get blood to, you know run to that area on an ankle and a heel stick. That's not what they did. So in my mind I'm looking at this like I'm not sure why we're doing this. This seems a little bit wrong to me. I could understand when they were doing it when she was born and they only needed a little bit, but they needed For a glucose test, not for an actual blood draw.
Speaker 3:Correct, correct. They needed two tubes of blood and they were squeezing her heel. And squeezing her heel. She was screaming at the top of her lungs and it was this scream that I have never heard in my life and I'll tell you right now, I never want to hear it again in my life, I don't. This little girl was hurting and all I could do was just hold her and tell her that I'm there, it's okay and I can hear it, and it just hurts me because there was nothing that I could do except for watch them continuously squeeze her heel to get this blood. And so the nurse the night nurse had come in and, as she was talking to me, kind of doing, doing her rounds, getting, um, you know, the getting to know us. Um, really, she didn't just want to be the nurse, she wanted to know who we were and why we were there.
Speaker 1:And yeah, lindsey was really nice she was super nice I came in during the conversation yeah, portion of it and then she unfortunately got a phone call that both of the blood draws failed because they they clotted which of course they did.
Speaker 3:You're squeezing the ankle and you're getting blood out and you're putting it into a tube and you're tapping it, which is allowing air to get to it. So of course that blood is doing what it's supposed to be doing. Unlike a standard stick, there's a tube that runs to the collection tube and there's nowhere for air to get in there, so it's not going to, it's not going to clot. So why this wasn't the first option? I will never know. I will never, ever allow them to do a heel stick again. Ever knowing, I'll just never let it happen again.
Speaker 1:They had to do it a third time.
Speaker 3:Lindsay was super nice and she was like let me try, let me try to see if I can do it and get it not to happen. Let's warm her heel for 10 extra minutes, because if you do warm up the heel you might be able to get it quicker and it's not going to clot. And unfortunately that third time didn't work either. So Lindsay said you know, we can give her a break or we can do a standard blood draw. And I said let's just do it, let's just get it done and over with. She unfortunately has had this done three times, but let's just get this done because I don't want her to have to go through this again. I I don't want to prolong it. Uh, my thought process is let's just get it done and over with um. She's already dealt with blood work three other times, unfortunately, um, but I don't want her to have to do it tomorrow too yeah I would rather just get it done and over with.
Speaker 3:So I give Paisley a bottle, they call down to the lab and of course Miss Thang falls asleep in my arms and they walked in and Lindsay was like if she's sleeping, we'll do this tomorrow. And I was like no, ma'am, let's just get it done and over with. So I laid her on the bed and the nurse. I feel bad. I feel bad. The nurse came in and she was like all right, so we're going to do a heel stick. Lindsay and I both looked at her and bit her head off. I was like absolutely not. Nope, not happening. We've done it three times. It failed, we're not doing it, we're not doing it.
Speaker 3:So they tried to find a vein in her arm and unfortunately could not. But they did find one in the top of her hand and it was quick, it was. You know, they got what they needed. She actually got a little bit of extra just in case. So, yeah, and that blood work came back. It came back. Good, it was not, it did not clot or anything like that. So that was done and over with. Unfortunately, the poor girl had to go through three heel pricks.
Speaker 1:So Saturday um that night, we spent the night in the hospital we stepped in a reclining chair and I had the little kid's bed in the window and um tried to get sleep and prepare for the the next morning. Um you know, sleeping in a hospital is never fun, um you?
Speaker 3:know, and I think I woke up every 30 minutes.
Speaker 1:The thought of the inevitable is like the most difficult thing. And before we get to the testing, I just this entire time kept holding on to the fact that, like this is not possible, this is not possible. And when we started you roll the clocks back to us having our first conversations on Friday I had said that you know, for me, one of the reasons why it took me so long in life to decide to have children was the fear of this. Feared about having kids is having to deal with the heartache and the heartbreak and and and dealing with um, you know, trying to um be there for your child and help through like these things that are out of your control, right, like disabilities and things that you just can't control. And that's one of the things that scared me the most about having children and um, for me, when we found out that we were going to be parents right after my father passed, when we, literally you were pregnant, when we were giving, like the eulogy, all of those things signified to me that my dad is a part of this and that he had a hand in picking who our little daughter was going to be. And I remember, if you go back to all these you know conversations. Before I was bound and determined that it was a little boy, cause my dad always wanted to have a grandson and I thought, that's, you know, he was going to send me, um, the boy that I, that I wanted. And ultimately my dad sent me the little girl that I needed and um, you know you can hear me have those conversations on previous episodes but, uh, he absolutely did right and sent me what um we needed. And this whole time I've led into a positive mindset and the faith that Paisley Rain arrived here when she did, because she needed to save this family. My father and the good Lord knew that the three of us wouldn't pull through over his loss without a miracle. And she was our miracle, a miracle, and she was our miracle. And I was steadfast and confident in the fact that nothing could be wrong with our miracles, because the last thing that would happen would be to save us, to send us our miracle, followed by great heartache and that's all I kept clinging to the whole time.
Speaker 1:And, um, I tried to do my best to not focus on what could be um, because when I found myself doing that, you'd kind of very quickly wind up in a dark hole, you know. And um, like, my mom was asking me on the ride home on Saturday when I was dropping her off, like are you okay, whatever? And I just kept telling her I'm not, I'm not thinking about it, like I'm not trying to think about it. And, um, I told her exactly what I just told you and she said, well, what if it goes the other way? And I was like I honestly I don't, I can't process that. I said, but I'm probably going to ride my train straight to hell, because if this comes off the tracks for me, I don't know if I can hold on. I don't know where I'm going to go or what I'm going to do or how I'm going to respond if this doesn't come true. You know what I mean. I couldn't even think about what would happen. So I couldn't, you know what I mean. I just wouldn't do it.
Speaker 1:But I, I just hung to my faith that this was going to be okay. This was going to be okay and that you know, there's going to be a reason for what we're doing. Um, it's going to show us the true priorities in our life. It's going to make all of us slow down and focus on what's important and realize that all the things that are going around in our lives, that are spinning around in our worlds, that are bringing us down, that are causing us stress, that are causing us anxiety, that you know is robbing us from sleep, we're going to realize after this experience that none of that shit matters. If you have each other and you have your health, that's it. That shit matters. If you have each other and you have your health, that's it.
Speaker 1:And I just kept telling myself and praying and saying I get it. I understand the lesson. You're putting me here for a reason, like I understand the lesson. Please don't use my child to teach a lesson anymore. I get it. She's what's important. This is all that's important. All the things that I can't fix, I can't afford, I can't remedy, it doesn't matter to me. This is all that's important. All the things that I can't fix, I can't afford, I can't remedy, it doesn't matter to me. This is all that's important to me. And when you spend a few days in those four walls focusing on your child and realizing this is all that ever-loving matters in this world, when you're in there and you're talking to yourself and telling yourself I'll give up everything else. I have to make sure she's okay. That's all that's important to me. It really puts your life in a whole different perspective.
Speaker 3:You know, yeah for sure. That's definitely all the things that I've been thinking about. It was just, I need to focus on her, and I think it was Saturday night. You ended up going home and that was hard for me because you guys you and your mom were there from when we got there on Saturday morning until you left.
Speaker 3:And as soon as you guys left, I just held her and cried because I was like, why us, why now? Um, and I just prayed and she just, paisley, just sat there, happy as can be, just playing and smiling at me and talking, and I did the same thing. I said whatever it takes, whatever it means to make sure that my little girl is healthy and happy, I don't care, I'll give it all up, but please just watch over her. I prayed to my mom, I prayed to your dad and I said, please, whoever, everyone, just watch over my little girl, just make sure that she's okay. Just having her there, just so happy, helped me during those times of just watching the clock and counting down the hours, until I knew that they were going to come in and put her machine on.
Speaker 1:It was just the ironic thing is that she was the strongest one in the room. You know what I mean. And, uh, she was just so happy all the time.
Speaker 1:And um, it puts a different, a different perspective on things. When she's the one going through it and she's just smiling through it and, um, you know, she clearly screamed her way through it too Like when, when they came in on Sunday morning and started gluing all those things to her head and, uh, you know she's losing it and when she will literally just lock eyes with you and just look through your soul, like, like, why are you letting them do this to me?
Speaker 1:it's hurt like that, um, that's is, uh, it's hard to process Because you know, like I, like she knows, hey, my dad has the ability to take me out of here. You can remove me from the situation while you're still leaving me here. You know you can't explain to an infant. You know that, hey, man, we have to do this.
Speaker 3:I can't tell you how many times I just held her and said I'm sorry.
Speaker 1:I'm sorry.
Speaker 3:I love you and I'm sorry.
Speaker 1:I'm sorry, I love you and I'm sorry Seeing her with all the wires glued to her head, with the fishnet on and the tape all around her head and just the train of wires to the back of her head and the wires come off her feet and everything.
Speaker 3:You could watch her heartbeat and pulse on the screen, and it was just too much.
Speaker 1:There's a computer screen with all these different wavelengths on it. They're measuring all different areas of her brain and her body movements. They're looking at oxygen and heart rate and everything at the same time. So there's all these monitors, there's a camera that films all of us at all times and as the test is rolling on on Sunday, we're looking at things and they have a button that every time she would drop her head, you hit the button to kind of log the event. And she had so many instances where she dropped her head. She's changed from dropping it repeatedly, like five or six times in a row, to dropping it once or twice, but doing it a lot more often, which ultimately us staying home on Friday was helpful because she wasn't even the testing. Waiting until Sunday was helpful because it just ramped up testing. Waiting until sunday was helpful because um she, it just ramped up the
Speaker 1:activity ramped up on sunday yeah, because saturday we didn't see it much right, when you're watching this computer screen and you're seeing every time she does something, how does it react? When you're seeing it log things on its own and you're trying to like observe what's going on next. You know, like we talk about dr google I'm on google looking at eeg maps for healthy brains in a six-month-old versus. You know seizures and epilepsy and all these things and you're trying to compare wavelengths and you're going back and forth and you're trying to get a freaking a google degree on what's happening, because you need some damn answers. You know, and we're like well, if we, if we push the button, this is how it logs it. And then we're like okay, we've logged 20 events here. What happens if she drops her head and we don't hit the button? Does this record it? What's going on? We're analyzing every single thing and, um, it was. It was crazy because she just played through all of it.
Speaker 1:Like she was just herself. She didn't change herself so much so that, um, like everybody, all the nurses, every nurse came in to see her.
Speaker 3:Yeah, even if she wasn't there, her their patient, like we heard multiple times. I heard the cutest baby is in here. Like and they all just came in to to see her.
Speaker 1:She would wave to them and um, smile and and um.
Speaker 3:I don't know about you, but before we started monitoring um you, but before we started monitoring um, we actually had dr heist. He did rounds. We didn't touch on that um when the machine had gotten put on her. Yeah, um and uh.
Speaker 3:I honestly, after that conversation, had a glimpse of hope that that maybe this wasn't yeah the seizures, like, yeah, I had a glimpse of hope and I held on that the entire time. I said this is it, this is this, and and you hate to do that because you want to be prepared for the worst.
Speaker 1:Yeah, it's tough when you hang onto the glimmer of hope. I did that the whole time my dad was sick, you know, every day I found a new layer of hope that I could lean into and and that just kind of ramped up the disappointment. But we needed, we needed a dose of hopium and yeah, um, the um, the the test had just begun. Yep, no events had happened she was sleeping taking a little nap and he came in to do an evaluation. He was looking at the results and he said this is encouraging.
Speaker 1:I'm actually yeah really encouraged of what I'm seeing already he says I like this, I like this a lot yeah and that's when he mentioned something else to us yeah um, and you're the medical person in the room, so you can he um said that it's um.
Speaker 3:There's a possibility of benign myoclonus um epilep uh it's over here. I can't read it I know it's benign myoclonus of infants, I think is what it's called Yep Benign Myoclonus of Infancy. So he dropped that on us. I'm going to tell you right now, I didn't remember what he said. I actually asked the night nurse or we had conversations later on in the day about what he had said, because all I heard, like Charlie Brown, it may not be. It may be that I don't know what he said. I did not that name.
Speaker 1:All we knew was what he said was if it is that case, then she'll outgrow it yeah and um so I grasped onto that as a doctor, you don't usually, in the middle of a test, throw something that you know your patients and patients family is going to cling on to, unless you think there's a possibility of it. So there was something he saw in the results early now. This is a sunday, he's you know he's on call Until 6 o'clock. He's leaving for the day.
Speaker 3:We're not going to see him when the test is done.
Speaker 1:He even said at that time the discouraging part was this is a 24-hour test. I'm not taking it off until tomorrow morning, and that's only if we get a bunch of events. If those events don't happen, then I'm going to keep you on this until at least tuesday we're going to do at least 48 hours, and he also said I won't be here to read your tests on monday or tuesday. Another dr, will um, who was a professional. That obviously she actually ran a clinic in chicago and stuff. So we knew we were in good hands.
Speaker 1:But you know, we were hopeful that this wouldn't have to be an all-day, 24-hour, 48-hour scenario. So, like you said, we kind of cling to that hope and, you know, throughout the day we're just talking ourselves in and out of so many scenarios, but trying to remain as positive as possible and explaining to everybody that this only happens when she's tired. It doesn't happen when she's laying down. A seizure could happen at any time yeah, you can't plan if her head starts dropping and you lay her down. It's over. It doesn't happen anymore.
Speaker 3:We don't see her tensing up um throwing her hands, doing all the things that a seizure patient would would do.
Speaker 1:It's to the point of us, like I'm literally been reading, like pupil dilation and infants, you know, and I'm like going through every single thing I possibly can, like what do I need to be looking for? You know, trying to get any kind of clue, um, which probably wasn't the best thing, but I wanted to at least be prepared enough that, if it didn't go our way, then I was more prepared to ask questions.
Speaker 3:Right, you know what I'm saying yeah, and it was getting to the point where we like continuously kept telling like dr heist, uh, he had seen her do it, which was, which was perfect. He had seen her before we had gotten brought upstairs. Um, on saturday she was sitting there because she was overtired, because again doesn't want to be left out. Um, after being evaluated in the er, she we're like she's gonna do it. Like we could pinpoint it, like we're like give me five here.
Speaker 1:This is gonna happen.
Speaker 3:Give me five more minutes, I'm gonna sit her up and she's gonna do it because she's overtired and you don't want her to do it right, but we can.
Speaker 1:we can make her do it. We knew that well. I could tell you within 10 minutes whether she was going to do it. She's going to do it, yeah. Yeah, which is not a seizure. You can't plan, you still can yeah.
Speaker 3:You can't plan when she's going to have, like when someone's going to have a seizure.
Speaker 1:So I think she needs to be evaluated.
Speaker 3:Yeah, he said yeah, this is definitely what I'm, you know. I think this is infantile spasms and I want to have her have the test. So we're like not even halfway through the test and she's like down for the count, Like she's like taking a nap. I'm sitting in the recliner chair and she's like watching.
Speaker 1:She'd nap with you for like two hours, right it was two and a half hours.
Speaker 3:She was like we were hitting like an hour nap. That was normal. And I was like you know what, whatever, we're not doing anything. I literally sat there and watched, like well, that was five minutes, because the clock is right next to the tv. I'm like trying to keep myself occupied on, I don't even know. I think it's like chicago zoo or something, and I'm like, okay, well, this is cool and I'll look, glance over. And I was like, well, that was 10 minutes. Look back at the clock and I'm like, god, almighty, like I want to throw a towel over that thing and just not even watch, because I'm like I know we're here for 24 hours and we're like it's two in the afternoon, like it's. This is just not going very well. And I tell you what I had been watching the clock and watching the clock and sure as shit I look up at that goddamn TV and there, mind you, we're watching a zoo show. Okay, chicago Zoo. And what comes up? What are they talking about next? A fucking bald eagle. Yep, I'm done. I'm done.
Speaker 3:I just start crying. I'm holding Paisley, looking at her with all these cords and cables. I'm like crying. I'm like thanking Pops. I'm like that's it, that's what I needed, we're going to be okay. That's what he would always say Everything's going to be okay, we're going to be fine. And I just let her sleep. I said you know what, screw it. They want her to sleep, they want to see her sleeping, they want to see her active. And we've done all the things. We've been playing, we've been chilling, we've been eating, we've done all the things. I'm like we've logged it 20 times. I'm like we're going to have all the data and then some. There's not going to be any chance that we're going to have to redo this test or not have the information that they need. And I was like fine, screw it, you want to sleep for two and a half hours because we're in the hospital and what else can we do? Fine, I'll tell you what I wanted to take a nap, so bad during that time. But I know that I'm on camera.
Speaker 1:Yeah.
Speaker 3:And they made a point to let me know that if they caught us on like not doing safe sleeping, if we were sleeping with her in our arms and stuff, they would write us up. Yeah, and after would write us up and after two they have to report it because they're mandated reporters. I had not slept friday into saturday at all at all. 30 minutes here, 30 minutes there. I was so exhausted I barely had eaten anything and I was like I want to close my eyes. So bad, but I'm not getting I'm not getting written up it was.
Speaker 3:It was bad. So two and a half hours went by. She woke up. Another doctor came in who was on doing rounds, checked on her. They thought she was great. You know she looks good. They came in to do vital signs and sometimes they just came in just to say hi, they just wanted to see her.
Speaker 1:They repeatedly did that, yeah.
Speaker 3:Yeah.
Speaker 1:Right around this time we were kind of having conversations where, like I needed to come home or somebody needed to come home because we had stuff that needed to be taken care of, and then we needed supplies so we can, like, take showers and stuff, and we're going to be stuck there for at least one more night. So we're making all those plans, at least one more night. So we're making all those plans. And you had said, you know, if you don't need to go, then, like I need a break, like you had a break yesterday, I need to get myself out of here for a minute.
Speaker 1:So the tables turned and this time you took a break and you left and I stayed with Paisley and um.
Speaker 1:Before um, right before you left, I was on my phone scrolling around and um on Facebook, and I saw, uh, a friend of mine, somebody that's like a, an acquaintance, more so that I sold motorcycles to him and his family and he has a little boy that has been dealing with a lot of medical difficulties and challenges. And I saw his post pop up on my timeline and it was from the same place we were in and the post is basically him and his family preparing to say goodbye to their son, who's just over a year old at this point. No thank you.
Speaker 1:And it's the same hallways that I've walked. It's the same benches I've passed. It's the same hallways that I've walked.
Speaker 3:It's the same benches I've passed.
Speaker 1:It's the same doors right they could be one door, two doors, ten doors down from us, you know.
Speaker 3:You had actually seen him when we were there to visit your dad and I was there right before my dad passed.
Speaker 1:His little boy had just been born and I remember greeting him downstairs and talking to him.
Speaker 3:Yeah, right in the lobby.
Speaker 1:And to think about all that, and then even for me to be back in this hospital, walking these halls with my mother after all the time we spent there with my father, that was weighing on me heavily. And just reliving all of those experiences with him and all those memories, and trying to separate those things.
Speaker 1:And like the process, all that was just really weighing on me. But when I'm sitting there and I'm seeing these messages, literally I just turn my phone on and that's what's looking me in the face is a friend dealing with something to the one millionth degree of what we're dealing with, something to the one millionth degree of what we're dealing with. And I just looked at that and I prayed for him and for his family and uh, immediately begin to just thank thank God for for us and our situation and to pray that we're going to, everything's going to gonna be okay, but to be thankful for what we have and where we are, you know, and, um, you almost feel guilty for for having those thoughts of like, why me, when you know somebody else is going through something so much greater than what you are, you know, but, um, you, you, you had to come home and, um, I did what you did when I, when, when I left, and I just, you know, bundled her up and and sat there with her and uh, talk to her and apologize and prayed until she slept, and then we just just sat there the whole time we were gone. You know, and I think you can talk about how difficult it is when you realize how difficult it is to actually pull away from the hospital. You know what I mean.
Speaker 1:So you came home to run errands and we just sat there and she slept for another hour and a half or so and, uh, then she, we had some nurses come in and check on her and start doing some vitals and I kind of woke her up. So I set up like a little play area for her and, uh, we were playing and then I think three or four nurses came in because they were like we just heard this beautiful baby on the planet is in here hanging out, so we wanted to come in. I began to get suspicious whether they were coming in and saying wow, there's the cutest baby with the honkiest of a dad by himself in there. You know what?
Speaker 3:I mean, don't let me catch a charge.
Speaker 1:Wow, you know, I'm sure dad had something to do with it. A charge, wow, you know sure dad had something to do with it. But uh, his nurse just kept coming in to check on her and, um, you know, we're getting prepared for another night in the hospital. Then you're gonna pick up chipotle and you've got your home doing chores and packing clothes.
Speaker 3:Yeah, but before we even got there.
Speaker 3:That was like walking out to the parking garage was like very hard, like it was like heartbreaking, like I was like I shouldn't be leaving. How do I leave my baby uncertain? Because the only time that I've actually left her is gone to work, and I knew that she was fine. I knew that she was fine, I knew that she was healthy, happy with you guys, she's fine. So for me to walk away from her with the uncertainty, I was crushed. I got in my car, turned my car on and we have a camera that faces her car seat and it was empty and I just cried, like that just empty feeling in your, in your heart, like that feeling of, like a ball in your throat just overcame me and I just sat there in the parking garage for at least 10 minutes before I could know clear my eyes enough to actually see where I was going.
Speaker 3:Um, so yeah, then I, you know, got the courage to to drive home and when I got home, I raced around as quickly as I could to to get gas and pack up the um, all the stuff that we needed and do the barn chores, take care of the animals and do all those things, um, to get out of here and get back to you as quickly as I can, yeah, um, and so you know I do all those things. And I was like, all right, you know how's everything going there, like I'm checking in with you and you're like, well, she's still sleeping, we're good, we're, we're okay, like she's doing great. Um, I'm like panicking, like I'm like, oh, my god, she's probably gonna have a big like a big situation happen, like while I'm not there and I'm not there to like help. And so I'm like freaking out. And so I was like, well, I'm on my way back, I'm just finishing up the chores. I'm running upstairs Like damn pig is choking again, but I don't really care, like I'm what's going on.
Speaker 3:I'm there and she helps me do some things. And then I hit the road and I'm, you know, at the, at the gas station. I'm like watching the gas, like I'm like let's go, like I need to get out of here, like you're taking all day. So I I did get my gas and I get my car and I'm like trying to like queue up the directions to make sure that I like get there, because my mind is just mush at this point.
Speaker 1:So that point. I've driven to that hospital hundreds of times and when I was returning on Saturday night I missed a turn and ended up in the ghetto.
Speaker 3:Yeah.
Speaker 1:And to your point, like your mind's just not in the right place, like I'm just like. So I totally understand what you're saying.
Speaker 3:Yeah, I'm like I don't even I know how to get there, but I don't know how to get there right now at this moment.
Speaker 3:So I'm doing that and all of a sudden my phone, like my dash, lights up and it's like someone's calling me and I'm like oh my God, oh my God, like I'm shaking trying to answer it because I can see that it's a Scarborough number. So I'm like, oh my God, what happened? Like you can't get to your phone, like I immediately anxiety straight down a rabbit hole. I'm like you can't get to your phone and something happened, an emergency, like what's going on? And I was like I answer it and I was like hello, like you.
Speaker 3:And he's like on the other line and he's like hi, is this Allie? And I was like yeah, and he's like this is Dr Heiss. And I was like why do you sound so happy? Like I'm not saying that, but I'm like what's going on? He was like I have great news and I was like don't lie to me, don't lie to me. I like literally said it twice and he was like nope, he's like I, I have some wonderful news and, uh, you can go home yeah and I said are you kidding me right now?
Speaker 3:and I just started crying. I was like you're lying. No, this is you're, you're serious, you're serious, we can go home. And he says, yep, um, I'm gonna send them up, I'm gonna send up my team right now and we're gonna unplug her. And, uh, it's not seizures, you're, she's gonna outgrow this.
Speaker 3:This is the, in fact, what he called it, the benign myoclonus of infancy, and there's no rhyme or reason as to why it happens. Babies are weird. They have it. It comes, it goes. It will get worse before it gets any better. He said but they're coming to your, coming to your room right now. Are you at the hospital? And I said I'm not, but my husband is, um, he's like I'll call him. And I was like no, no, let me call him. And he was like you're driving, I want you to get there safely, let me call him. And I was like no, I'll call him, like I was just so excited that I had to get you on the phone and tell you that we are going home. Like we still had eight hours to go on this at least, because it is probably seven o'clock now.
Speaker 1:We had another 12 hours. I think Something yeah.
Speaker 3:Like we still had time on the clock. I'm looking at the discharge paper right now and it said that we did 10 hours, 10.75 hours on that machine yeah, 10.75 hours on that machine. And he had enough information to rule out any sort of epilepsy across the board.
Speaker 1:Basically what we did with her the fact that you gave her a two and a half hour nap. I gave her an hour and a half nap. That mimicked a night's sleep. Yep, all the activities we'd logged. He was basically like you've given me 24 hours of data in 10 hours. Yep, all the activities we'd logged.
Speaker 1:He was basically like you've given me 24 hours of data in 10 hours, yep. When you called and I answered the phone, I just figured you wanted an update, you know. But I could hear in your voice like you were like crying when you were talking to me, so I didn't know what was going on.
Speaker 3:I remember I said we're going home.
Speaker 1:You kept saying going home, I I didn't. I didn't know if, but like the way you were crying at first, I didn't know if, like, like, we're going, she has seizures. We're going home like or or like yeah or she?
Speaker 1:doesn't you know like and uh I didn't know how to even like put the words out when it's only everything was okay, like I just I just I mean, I'm looking at her, you know, and she like looks right into my eyes and I just started bawling. I told her we're going home, you're okay, and I'm holding her. I told her we're going home, you're okay and I'm holding her. And minutes after getting off the phone with you, the door blew open and it was our night nurse. Did you hear the news You're getting out of here?
Speaker 3:Yep.
Speaker 1:And they moved so quick that before I would say 20 minutes to a half an hour before you made it to the hospital I had all of her stuff was disassembled, the doctors or whatever the nurses came in took everything off of her, cleaned her head, gave me the discharge paperwork and we packed up most of the room before you, you know 20 minutes or so before you could even make it there. That's how they were motivated to get us out of there. She did not like the stuff coming off all the glue and adhesive all over.
Speaker 1:It was so bad and she was having such a reaction to it that I basically stripped down to my skivvies and jumped in the shower with her so we could wash the stuff off of her. But they were so motivated to get us out of there, to get us home.
Speaker 3:They were sad to see her go because she was so happy and they loved her so much, but they were.
Speaker 1:We had the conversation, that the amount of stuff that they have to deal with, the heartache and heartbreak that they have to deal with to have um six month old, happy little girl yeah greeting them at all times, always smiling um, with a positive, showing them her new trick of waving high.
Speaker 1:Yeah but with a positive prognosis at the same time. Like I think they just wanted to be around her, it was positive energy, you know um, another thing that's kind of crazy about this whole scenario is, during the mix of all of this, like everything that's happened, is my little girl called me dad, mm-hmm.
Speaker 3:Yeah, first words dad. Yeah, first words dad. So much so that the eeg tech said did she just say dad? And I looked at you and I said yep, she sure did.
Speaker 1:She hasn't said mom or anything, nothing this has been, uh, I don't even know how to. I don't even know how to sum this up, man, I really don't like. Some of it seems like a dream, you know what I mean. Some of it seems like a nightmare, like, uh, the whirlwind of emotion that we went through, the fact it all started with my little girl playing and her head falling, to all of this, you know, to a few days later, the phone call like we're okay, we can go home. Like I don't even know how to really truly sum up what we just went through.
Speaker 3:I don't.
Speaker 1:Yeah, I don't have it either you go into a weekend with like your list of things right, like you have a couple days off and I look at weekends as time for me to work you know what? I mean so like we're all writing things up and think about what we're going to do, when we were so far away from anything we thought possible of doing yeah we could never have imagined our weekend going the way that it did.
Speaker 1:you know you never want to dream up the frightening experience that we had, but you are so thankful for the positive news that we received. It's wild, I don't know how to explain it. I really don't.
Speaker 3:All I can do is thank my lucky stars and everyone upstairs who's watching over us, and just continue to pray that they watch over us during this journey of life with her.
Speaker 1:I mean, we came out of this on the way home saying that if there's one thing that we need to do after this weekend is to lean so much more into our faith because that's the only thing that pulled us through to continue to train our brains to remain positive, but to lean into our faith because that's ultimately all we had, and there's a lot of lessons learned over the weekend on priorities and on, you know, spirituality and positivity, and I don't know. I don't know how long it's going to take for me to truly process what we went through, like we.
Speaker 1:I'm so, I'm so grateful and thankful that this was a a three-day experience, not a three-month, not a three-year, not a 30-year experience you know what I mean so many families go through this stuff long term like I was worried I was signing up for like the type of uh, long drawn-on experience we had with my dad. The fact that we had to go through it was difficult, but the fact that we made it through it as quickly as we did was such a blessing.
Speaker 3:I mean, we do still have a little bit of a road ahead of us when it comes to her overcoming this. We do have things that we have to put into play we need to take away, like specific hard toys when she's getting tired, because she is still going to drop her head. And she could certainly hurt herself with what she's doing, you know, so it takes a lot of attention, you know.
Speaker 3:but we do have follow ups, with the neurologist coming up in the next couple of weeks, and they're going to monitor her and kind of watch this process just to ensure that it doesn't turn into anything else. So they are going to monitor that. But it's going to be the same provider that saw us through this entire process and the one that gave us the good news, and so that makes us feel good that we're going to be able to circle back with him. He, he has the data, he has everything that he needs, um, and he has no doubt in his mind that she's going to outgrow this and and we're going to be okay. So, um, you know, there is a little bit of a road ahead of us that we're going to have to, um, you know, still monitor and and be cautious of um, but to know the outcome was yeah, this was as positive as a result as we could have hoped for.
Speaker 1:Yeah, um, you know the initial pediatrician was wrong and saying it was a developmental yeah you know thing, it actually is a condition yeah we're so grateful that it wasn't the spasms that lead to these seizures. Um, we're so grateful that we wasn't the spasms that lead to these seizures.
Speaker 3:We're so grateful that we went and had it done. You know what I mean, because it did get worse.
Speaker 1:Like time she's done it, the frequency in which it happens. We would have been scared and we would have been starting this process and waiting on appointments and things Looking to get in.
Speaker 1:You always say that when you sprinkle time and distance on it, you know things make sense and and you know it happens for a reason. So we did what we had to do when we had to do it. It went the way it had to go, and we're thankful to now know that our baby girl is going to be okay. Yeah, and um. Chalk it up to um a confirmation of faith and a lesson in priorities, and and um to truly be thankful for our blessings and what we truly have. You know, I think it really makes you not take health for granted.
Speaker 3:You know what I mean. I think it's also really important to remind the moms out there and dads. I don't know how the dad intuition works, but I did not feel well on Friday at all at all and just I have migraines. But to think about it, I did not. This was not a migraine. I felt different, I felt odd, I felt off, so much so that I left work early. I do not call out, I do not leave work early unless it's planned Like it's on the schedule already. I went to my boss and I was like I feel sick to my stomach, I have to go home, and it was like within 15, 20 minutes of me being home early that I had seen the episode. Would I have not and not caught it on camera Right? Would we be frantically looking now?
Speaker 1:Well, we also know that messages never would have made it to a pediatrician Correct.
Speaker 2:You know what I mean we never would have had their input. Who knows how things would have went so?
Speaker 1:clearly, we were put in a position to see these things when we did to identify them and to make the course of action that we did to identify them, um, and you know, and and to make the course of action that we did so so just trust your gut when it comes to your children and if you are uncertain, take a video, like you know, send it in to your pediatrician I know they were all thankful everybody we ran into during this process that we had a video.
Speaker 1:So they're like can I see the video? Can I see? The video even the nurses like everybody, can I see the?
Speaker 3:video. Can I see it? I'm like, yeah, absolutely, here you go. And it gave them a full perspective of what they're watching for on the floor as well.
Speaker 1:We were handled with such class. We had received the top-notch best attention. You what? I mean, we were, we were taken care of, they were, everybody was very professional and um they were actually surprised how like self-sufficient we were.
Speaker 3:They were like you guys can go downstairs, we'll watch. Nope, I'm not leaving her like do you need anything? Nope, we're good.
Speaker 1:Nothing, nope, we're good, I know there's um, before we wrap this up, before I forget, I know there's a lot of people that are listening right now that are going to be like they're going to reach out and say dude, why did you guys not reach out to us? You didn't reach out to anybody.
Speaker 1:Why did you, you know, not ask for help? Why did? I could have done the chores for you. The honest truth is that we don't know. You know what I mean, like my, my, um, all my mental capacity, all my every ounce of energy and being, and who I was, was dedicated to my little girl and I couldn't really process anything else I'm honest, I couldn't.
Speaker 3:I have missed text messages in my phone that like sorry if I didn't get to you. I just I'm supposed to be planning a baby shower. I just I mentally could not do anything. I'm supposed to be working and doing, making flyers and stuff. I just I don't have it in me. I have no mental capacity to do anything else except for stare at my daughter. I didn't even have the mental capacity to talk to you.
Speaker 1:Let's be honest. Yeah, and you're talking about me. You're looking at me Right? Not? I want people listening. We're not talking about you saying we didn't have like. She's talking about me.
Speaker 3:Yeah, I'm staring at you in the eyes.
Speaker 1:Not speaking.
Speaker 3:Yeah.
Speaker 1:Um, so I apologize, I just. There was no ability to really reach out, there was no energy. Um.
Speaker 3:I also think that it's. It's important for you've talked about it on your podcast before that in times of need, sometimes you have to go to the core, your core, and me, you and your mom are the core, so like and now paisley being there, like we clung to each other and that was it we didn't have the ability to even think about anyone outside of our core.
Speaker 1:It was every ounce of energy and, being that, we had to keep the like the four of us um on the up and up you know what I mean. So. I apologize to those of you that are listening that we didn't reach out to you, cause that's basically all of you that are listening that know us.
Speaker 3:Um, you know it just nothing against you guys, nothing against anybody, man, it was.
Speaker 1:Um, I didn't. I would have not had the proper energy to actually give you a proper description of what was going on. You know what I mean, yeah like if I told you, hey, we're in the hospital, like I would, I couldn't have even fed you, yeah, the information for you to understand and it probably you would have been like who is this guy talking?
Speaker 3:or or it probably you would have been like who is this guy talking, or or me myself, cause it would have been like that are listening that we had conversations.
Speaker 1:Um, you reached out to me for something and I expressed to you this is where I'm at, this is what I'm doing, because I knew I also couldn't get in a conversation with you and like and and be myself.
Speaker 3:Yeah.
Speaker 1:You like and and be myself. Yeah, you know what?
Speaker 3:I mean I couldn't respond and be who I you expected me to be or give you answers you needed. So, um, katarina in particular, like I was like one word answers to her, because I'm just like I can't, like I I'm like answering like on my watch and I'm like, okay, yep, in the morning, like just very I I had missed a phone call from brian.
Speaker 1:Um, and hours had gone by before I realized. It might have been eight hours before I realized and I'm like should I? I mean, brian just put his life on hold to travel to florida with me. I owe him a message and it turned into what was going on and and you know, and, and it's like it's hard to put out there to people. You know what I mean.
Speaker 1:I had Matt Perkins had asked me a question and I was like this is what I'm dealing with, you know, and Finnegan as well. Those are the only people I talk to. I still, as we're having this recording, haven't reached out to anybody because, like I'm still trying to define the words and the energy to put it all together, yeah it was much easier for us to press record and tell our story.
Speaker 1:So I know a lot of people are going to hear the opening credit to this and be like what the fuck are you talking about? Yeah but this is this is it. I think that we learned a lesson on, you know, banding together and giving all you have to what's important, and that's our little girl. Yeah, and that's what we had, and that's about an hour and 30 minutes of us telling our story.
Speaker 3:Sorry, Kevin, if you were on cardio.
Speaker 1:Yeah, your legs are on fire if that's the case.
Speaker 1:So all y'all that are listening, thank you for listening. Thank you for your support. I know you would have been there. I know you would have prayed for listening. Thank you for your support. I know you would have been there. I know you would have prayed for us. I know you would have pulled for us. I know you would have offered to do many things for us. Just know us. Knowing you would have done those things meant the world to us and they continue to and they will always mean the world to us. We apologize for not reaching out to you. We truly, truly, were just giving every ounce of who we are and our being to our little girl and that's all we could do, and we didn't know how to proceed or to function or to process these things. But now we do and that's why we're sharing them with you.
Speaker 1:We want to say thank you and we love you and we thank you for supporting Little American Dream.
Speaker 3:Now go wash your fucking hands, you filthy germ-bot.
Speaker 1:Germ-bot Savage. That's it and that's all Biggie Smalls. If you're a loud, proud American and you find yourself just wanting more, find me on YouTube and Facebook at Loud, proud American Put the face page, as my mama calls it. If you're a fan of the Graham Cracker, you want to find me on Instagram. Or all the kids by tickety-talking on the TikTok. You can find me on both of those at loud, underscore, proud, underscore American. A big old thank you to the boys from the Gut Truckers for the background beats and the theme song to this year's podcast. If you are enjoying what you're hearing, you can track down the Gut Truckers on Facebook. Just search Gut Truckers. Give them, motherfuckers, a like too. I make it bleed. I hate to. I truly thank you for supporting my American dream. Now go wash your fucking hands, you filthy savage.