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Transcript

SPOTLIGHT on Michela · Sass N Sips

• 0:09
  SPEAKER_02: Hi, and welcome to this episode of Assassin's Sips Spotlight.
• 0:13
  SPEAKER_02: Today, our guest is going to be talking about what it's like to be the mom of a child with a rare disease.
• 0:20
  SPEAKER_02: And I am Lisa, and today I am sipping on coffee.
• 0:24
  SPEAKER_02: Because coffee.
• 0:27
  SPEAKER_03: Can't go wrong with coffee.
• 0:30
  SPEAKER_03: And I'm Agnes, and I am sipping on.
• 0:34
  SPEAKER_03: Okay.
• 0:35
  SPEAKER_03: I poured my wine into some fruit that had already fermented.
• 0:41
  SPEAKER_03: So then I added a little bit of sugar to it, shook that bad boy up.
• 0:45
  SPEAKER_03: And I'm feeling kind of nice.
• 0:50
  SPEAKER_02: And our guest is Michella.
• 0:52
  SPEAKER_02: And why don't you please introduce yourself?
• 0:56
  SPEAKER_00: Hi, I'm Michelle.
• 0:58
  SPEAKER_00: And um I'm sipping on a mimosa because that's my nice drink of choice this summer.
• 1:07
  SPEAKER_02: Oh, I'm lucky.
• 1:08
  SPEAKER_02: Lucky you.
• 1:10
  SPEAKER_02: So one of the things that we do here is we ask a silly question.
• 1:18
  SPEAKER_02: Ready?
• 1:19
  SPEAKER_02: Sure.
• 1:20
  SPEAKER_02: You've recently joined the Spice Girls.
• 1:25
  SPEAKER_02: What spice name have you created for yourself?
• 1:28
  SPEAKER_00: So you froze for me when you said you recently joined the Spice Girls.
• 1:32
  SPEAKER_00: And that was it.
• 1:34
  SPEAKER_00: Oh, okay.
• 1:36
  SPEAKER_00: I didn't hear anything else after that.
• 1:38
  SPEAKER_02: So the rest of the question was what spice name would you create for yourself?
• 1:44
  SPEAKER_01: Wow.
• 1:46
  SPEAKER_01: Um Jordy spice is already taken.
• 1:54
  SPEAKER_01: All the other ones are probably too folder.
• 1:56
  SPEAKER_00: Oh, we like those.
• 1:58
  SPEAKER_00: Because I'm meme to myself.
• 1:59
  SPEAKER_00: I would probably be sarcastic spice or asshole spice.
• 2:08
  SPEAKER_02: See, but that's why we're friends.
• 2:10
  SPEAKER_02: Verdictly honest spice.
• 2:16
  SPEAKER_02: Okay.
• 2:16
  SPEAKER_02: I like that.
• 2:17
  SPEAKER_03: That is funny.
• 2:18
  SPEAKER_02: Yeah.
• 2:18
  SPEAKER_02: Asshole spice.
• 2:20
  SPEAKER_02: Asshole spice, you know.
• 2:22
  SPEAKER_03: We should give ourselves spice names.
• 2:25
  SPEAKER_02: Oh, jeez.
• 2:27
  SPEAKER_03: See how offensive we can get.
• 2:31
  SPEAKER_03: Okay.
• 2:33
  SPEAKER_03: Would you rather go on a date with the Tiger King or dress like him?
• 2:40
  SPEAKER_03: I mean.
• 2:43
  SPEAKER_00: Obviously, it would be easier to dress like him, but if I don't want a date with him, I might get to pet a tiger.
• 2:49
  SPEAKER_02: You might not be his type, though.
• 2:51
  SPEAKER_00: Oh no, I'm definitely not his type because I don't have a wiener, but I uh it could be a platonic date.
• 2:58
  SPEAKER_00: I would I think I would probably go on a date with him so I could pet a tiger.
• 3:03
  SPEAKER_02: Yeah, I'm not mad at that.
• 3:04
  SPEAKER_02: Maybe so.
• 3:04
  SPEAKER_00: I don't want to get eaten by a big one.
• 3:06
  SPEAKER_02: He he seems like just enough crazy to be fun, right?
• 3:10
  SPEAKER_00: For like five minutes, right?
• 3:12
  SPEAKER_02: Yeah, yeah, yeah.
• 3:14
  SPEAKER_00: And then I might have to like already mentally have prepared like an exit strategy so that I'm not tiger food.
• 3:21
  SPEAKER_00: Definitely.
• 3:22
  SPEAKER_00: So I don't really know what's going on up there.
• 3:25
  SPEAKER_03: No, come prepared with the dart gun.
• 3:28
  SPEAKER_03: Yeah, yeah.
• 3:30
  SPEAKER_03: Okay.
• 3:31
  SPEAKER_03: It could be fun though.
• 3:32
  SPEAKER_03: So the whole day could be fun though, right?
• 3:35
  SPEAKER_03: Like, guess what I did?
• 3:36
  SPEAKER_03: It would be it would be one hell of a story.
• 3:38
  SPEAKER_03: And then petting the tiger would be like the least exciting part of the whole story.
• 3:43
  SPEAKER_03: Probably.
• 3:45
  SPEAKER_03: Probably.
• 3:46
  SPEAKER_02: Oh that all just sounds like um like a fever dream, you know?
• 3:54
  SPEAKER_02: Mm-hmm.
• 3:55
  SPEAKER_02: That kind of story.
• 3:56
  SPEAKER_02: People are gonna be like, oh.
• 3:58
  SPEAKER_00: Nobody would ever believe it.
• 3:59
  SPEAKER_00: How high I would how true it was.
• 4:03
  SPEAKER_03: So, FYI, something's gone on with my mic and all my wires.
• 4:08
  SPEAKER_03: I hear it.
• 4:09
  SPEAKER_03: I don't hear anything.
• 4:10
  SPEAKER_03: I just lose, I can't hear things, right?
• 4:13
  SPEAKER_02: No, no, no, but your sound is is coming louder a little bit.
• 4:16
  SPEAKER_02: I think my computer problems are affecting everyone.
• 4:18
  SPEAKER_02: I'm sorry.
• 4:19
  SPEAKER_03: It's contagious.
• 4:20
  SPEAKER_01: Okay.
• 4:20
  SPEAKER_01: It's contagious.
• 4:24
  SPEAKER_01: Okay.
• 4:25
  SPEAKER_02: So talk to us and tell us about everything.
• 4:34
  SPEAKER_02: Just keep it simple.
• 4:35
  SPEAKER_02: You know, just tell us everything.
• 4:38
  SPEAKER_00: About like why I'm here.
• 4:39
  SPEAKER_02: Like what about whatever optional you know, locations optional, be as specific as you want.
• 4:50
  SPEAKER_02: Use whatever words you want.
• 4:53
  SPEAKER_00: Um, so my 12-year-old has a rare disease called Hirsprungs.
• 5:01
  SPEAKER_00: Very hard to say, even harder to spell.
• 5:04
  SPEAKER_00: Um, and it's so rare.
• 5:09
  SPEAKER_00: It is one in five thousand live birds, and the way it is worded that way is because it's fatal if it's not treated, and it's most people don't know what it is, so it often goes untreated.
• 5:29
  SPEAKER_00: Um, a lot of kids are misdiagnosed.
• 5:32
  SPEAKER_00: Justin was misdiagnosed.
• 5:36
  SPEAKER_00: Um, there are protocols in place in the hospital to pick up on certain things within the first 48 hours of life.
• 5:48
  SPEAKER_00: Such as like when you have give birth in a hospital, usually there are like a checklist where you have to write down how many times when you fed, how much you fed, you know, um diaper changes, um, number one, number two, whatever.
• 6:08
  SPEAKER_00: And it also really depends on your staff, quite honestly.
• 6:15
  SPEAKER_00: Um, with my first pregnancy, I had amazing staff.
• 6:21
  SPEAKER_00: They were attentive, they were all over things with my 12-year-old um Nurse Ratchet did not, she was very grumpy, very like couldn't be bothered, and I didn't really need her.
• 6:39
  SPEAKER_00: This was my first rodeo, so I didn't I didn't ask for her for anything.
• 6:44
  SPEAKER_00: Um, I only spoke to her when she bombarded in my room and you know, insisted on checking up on things.
• 6:51
  SPEAKER_00: Um, at one point I said to her, he's really not holding anything down.
• 6:58
  SPEAKER_00: Every time I feed him, he's vomiting.
• 7:01
  SPEAKER_00: And she blew me off and said, spit up is not vomit.
• 7:06
  SPEAKER_00: And I was like, Okay, this is not my first baby.
• 7:09
  SPEAKER_00: I know the difference between spit up and vomit.
• 7:12
  SPEAKER_00: Thanks for the vote of confidence.
• 7:14
  SPEAKER_00: And uh was like, literally every single time I feed him, I can't get in more than a half an ounce before he's vomiting.
• 7:24
  SPEAKER_00: She rips him from me and says, Let me show you how to do this.
• 7:30
  SPEAKER_00: And she feeds him.
• 7:32
  SPEAKER_00: She gets about a half an ounce in and he vomits on her.
• 7:38
  SPEAKER_00: And she goes, Oh, well, this isn't good.
• 7:41
  SPEAKER_00: I was like, Well, that's kind of what I was telling you.
• 7:44
  SPEAKER_00: And she checks the chart and asks when he had his diaper changed.
• 7:51
  SPEAKER_00: And I said, I just changed him about a half an hour ago.
• 7:54
  SPEAKER_00: It was only pee.
• 7:56
  SPEAKER_00: What do you mean it was only pee?
• 7:59
  SPEAKER_00: Well, what I mean is when the diaper opened, there was only pee in there.
• 8:05
  SPEAKER_00: I was very frustrated at that point because very condescending.
• 8:09
  SPEAKER_00: She just, I don't know what was going on in her world at that point, but she just did not want to be a nurse, especially in my room that day.
• 8:17
  SPEAKER_00: So um, I was like, he has only peed.
• 8:22
  SPEAKER_00: Well, he has to go poop.
• 8:24
  SPEAKER_00: He has to go poop.
• 8:25
  SPEAKER_00: Okay, cool, but he hasn't yet.
• 8:28
  SPEAKER_00: What shall I do about that?
• 8:30
  SPEAKER_00: And I have to go call the doctor.
• 8:33
  SPEAKER_00: Okay, fine.
• 8:34
  SPEAKER_00: She goes and calls the doctor, and now they're like 10, 20 minutes later, ripping him out of my room.
• 8:40
  SPEAKER_00: Um, we have to do tests on him.
• 8:42
  SPEAKER_00: What do you mean you have to do tests on him?
• 8:44
  SPEAKER_00: Nobody explains anything.
• 8:46
  SPEAKER_00: They just assume that you have the same knowledge as them and the same protocols as if you work there.
• 8:52
  SPEAKER_00: No.
• 8:53
  SPEAKER_00: Um, so they took him out of my room and brought him to the nursery.
• 8:58
  SPEAKER_00: They did what they said, they call check for bowel sounds, which is basically with the stethoscope, when they listen to your heart, they're listening to his belly and seeing if there's any gurgling going on in there, any air, anything pushing through.
• 9:12
  SPEAKER_00: And there's no bowel sounds.
• 9:15
  SPEAKER_00: So, like, there's no movement going on in there.
• 9:19
  SPEAKER_00: Then they took him for an x-ray.
• 9:21
  SPEAKER_00: So they can see that there is stool in there.
• 9:24
  SPEAKER_00: Okay, fine.
• 9:26
  SPEAKER_00: Um, they can't tell anything other than that, particularly.
• 9:29
  SPEAKER_00: Oftentimes, they'll be looking for um distension if the intestines are larger than they should be.
• 9:37
  SPEAKER_00: So then they call the doctor back and they say, Okay, well, we're gonna take him back down to the NICU.
• 9:44
  SPEAKER_00: He was taken to the NICU initially when he was first born because his sugars were low.
• 9:50
  SPEAKER_00: He was a C-section baby.
• 9:51
  SPEAKER_00: That's not uncommon.
• 9:53
  SPEAKER_00: Um, and he was back with us within a couple hours.
• 9:57
  SPEAKER_00: So there was nothing notable there.
• 10:00
  SPEAKER_00: But this time they took him, and the on-call surgeon came.
• 10:09
  SPEAKER_00: This was probably around midnight, and I'm down there waiting because I'm like, you just took my kid with no explanation.
• 10:17
  SPEAKER_00: I don't have a clue what's going on.
• 10:18
  SPEAKER_00: I'm not leaving him.
• 10:20
  SPEAKER_00: I am like less than 24 hours out of a C-section, and you know, I'm standing there, like, okay, what are we doing?
• 10:29
  SPEAKER_00: And the surgeon was amazing.
• 10:32
  SPEAKER_00: He was very um, very personable, explained everything.
• 10:38
  SPEAKER_00: He's like, I'm gonna listen.
• 10:40
  SPEAKER_00: He's like, you know, he's gonna be fine.
• 10:42
  SPEAKER_00: He looks great, you know.
• 10:44
  SPEAKER_00: Um, like color and everything.
• 10:46
  SPEAKER_00: He still had he was he looked great.
• 10:48
  SPEAKER_00: You wouldn't know anything was wrong.
• 10:50
  SPEAKER_00: Um he goes, his belly's a little puffy.
• 10:54
  SPEAKER_00: Um I'm gonna irrigate him.
• 10:58
  SPEAKER_00: And that meant that they were going to go up through his bottom with a tube, basically.
• 11:03
  SPEAKER_00: Um, and I said, Okay, and he goes, You might not want to watch.
• 11:06
  SPEAKER_00: I was like, No, no, no, you're not gonna scare me.
• 11:08
  SPEAKER_00: I'm fine.
• 11:09
  SPEAKER_00: I'm not the squeamish type.
• 11:11
  SPEAKER_00: Go for it.
• 11:12
  SPEAKER_00: You may gross me out, but you're not gonna.
• 11:14
  SPEAKER_00: It's my kid.
• 11:15
  SPEAKER_00: Let's I want to see everything that's happening.
• 11:17
  SPEAKER_00: So he irrigated him and like out comes this like rubber gummy worm, basically, was the muconium.
• 11:26
  SPEAKER_00: And he's like, Okay, he's like, Well, that's good.
• 11:28
  SPEAKER_00: He's like, it could have just been nothing.
• 11:30
  SPEAKER_00: He said, Sometimes this happens.
• 11:32
  SPEAKER_00: He was trying to make me feel better.
• 11:34
  SPEAKER_00: This doesn't really happen.
• 11:35
  SPEAKER_00: But he was kind of hoping that because of how well he looked and how easily he was able to extract, um, that nothing else was going on.
• 11:47
  SPEAKER_00: So they kept him overnight for observation.
• 11:50
  SPEAKER_00: Um, he still did not go again after that for 24 hours.
• 11:55
  SPEAKER_00: So he says, Well, we're just gonna do another test.
• 11:58
  SPEAKER_00: And it could be one of two things.
• 12:00
  SPEAKER_00: He could either have cystic fibrosis or hersprungs.
• 12:06
  SPEAKER_00: It's not gonna be Hirschsprungs, it's never Hirschsprungs.
• 12:10
  SPEAKER_00: And he's like, Do you know anybody in your family that has CF?
• 12:14
  SPEAKER_00: Nope.
• 12:14
  SPEAKER_00: That's hereditary.
• 12:16
  SPEAKER_00: So you would know if somebody in your family had cystic fibrosis.
• 12:20
  SPEAKER_00: So I said, no.
• 12:21
  SPEAKER_00: Um, he's like, okay, it's probably just a fluke.
• 12:24
  SPEAKER_00: They do a barium enema, which is where they basically normally, if you were able to, you would drink the barium, and they do an x-ray, and then they can it lights up your intestines like glow lights.
• 13:07
  SPEAKER_00: So they did that, it really told them nothing.
• 13:11
  SPEAKER_00: So the next protocol is to do a suck, a suction biopsy.
• 13:15
  SPEAKER_00: They did that, and you have to wait a week for results.
• 13:20
  SPEAKER_00: So this child was in an ICU for a little over a week waiting for these results.
• 13:27
  SPEAKER_00: The results were inconclusive.
• 13:29
  SPEAKER_00: So they sent the second set of results out to another um another lab so that they can compare.
• 13:37
  SPEAKER_00: And they came back inconclusive as well.
• 13:41
  SPEAKER_00: At that point, he was going, they were very explosive.
• 13:47
  SPEAKER_00: It wasn't really him, it was like his body being so full that he's just basically exploding at that point.
• 13:58
  SPEAKER_00: So they tell me he's fine.
• 14:01
  SPEAKER_00: And I'm like, okay, well, then why are we still here?
• 14:03
  SPEAKER_00: And they're like, well, you know, he's going a little bit here and there.
• 14:06
  SPEAKER_00: So then, you know, as long as everything's good, we'll do the car seat test tomorrow.
• 14:09
  SPEAKER_00: You can go home.
• 14:10
  SPEAKER_00: Okay, cool.
• 14:12
  SPEAKER_00: And that's kind of like a standard test they do to make sure that when they're in their car seats, sitting up, they don't lose oxygen or anything, regardless of why they're in the NICU.
• 14:20
  SPEAKER_00: Um, so he passed that.
• 14:23
  SPEAKER_00: We go home.
• 14:25
  SPEAKER_00: He was about nine days old at this point.
• 14:30
  SPEAKER_00: I come home, I'm trying to feed him.
• 14:35
  SPEAKER_00: He's not really eating.
• 14:38
  SPEAKER_00: And he starts sleeping more and more and more.
• 14:45
  SPEAKER_00: It was my father's birthday.
• 14:47
  SPEAKER_00: We went over for cake.
• 14:51
  SPEAKER_00: I'm like frantic at this point because I'm like, I don't like this.
• 14:56
  SPEAKER_00: He's he's lethargic.
• 14:57
  SPEAKER_00: I can't wake him up.
• 14:59
  SPEAKER_00: I'm force feeding him while he's sleeping.
• 15:01
  SPEAKER_00: He's vomiting.
• 15:02
  SPEAKER_00: And I'm like, what is going on?
• 15:06
  SPEAKER_00: So I'm now panicking.
• 15:09
  SPEAKER_00: It's like the middle of the night, and I call one of my friends from high school, actually, she's from elementary school, who I knew was a NICU nurse over at a nearby hospital.
• 15:20
  SPEAKER_00: Not the one that we went to, but a nearby one.
• 15:23
  SPEAKER_00: And she goes, Honestly, if it were me, I would go back to the emergency room.
• 15:29
  SPEAKER_00: She's like, if you're saying that he's lethargic and he's not eating, and when you do force feed him, he's vomiting, go to the emergency room.
• 15:37
  SPEAKER_00: So I go back to the emergency room and we're sitting there all night.
• 15:40
  SPEAKER_00: And they get him to drink a little bit of um pediolite, basically.
• 15:48
  SPEAKER_00: And I'm like, I'm not really.
• 15:50
  SPEAKER_00: It's not the greatest thing to feed an infant pediolite because it's essentially just sugar water, right?
• 15:54
  SPEAKER_00: Like with electrolytes.
• 15:56
  SPEAKER_00: But and they're not really supposed to be drinking straight water at that point because they can't process it.
• 16:00
  SPEAKER_00: So they do that.
• 16:04
  SPEAKER_00: He stools a little bit.
• 16:07
  SPEAKER_00: They send us home saying he probably just caught something from the NICU.
• 16:12
  SPEAKER_00: Stomach bug is going around.
• 16:13
  SPEAKER_00: And I'm like, everything that I've just told you, why we're here, what the surgeon said, did you even check with the NICU or the surgeon on call?
• 16:24
  SPEAKER_00: Clearly not, because they sent us home.
• 16:28
  SPEAKER_00: So this goes on for a few more days.
• 16:31
  SPEAKER_00: I have an appointment to follow up with the surgeon that he saw in the NICU.
• 16:36
  SPEAKER_00: When we left the NICU, it was his partner that was on call.
• 16:40
  SPEAKER_00: So he actually didn't see him the last two, three days that we were there.
• 16:45
  SPEAKER_00: We get to his office.
• 16:47
  SPEAKER_00: I tell him everything that's going on.
• 16:49
  SPEAKER_00: He does an exam and he goes, I don't know why they sent you home.
• 16:55
  SPEAKER_00: They should not have sent you home with a test that didn't give them answers.
• 17:00
  SPEAKER_00: I said, Okay.
• 17:01
  SPEAKER_00: And I'm just standing there like, what do I do?
• 17:04
  SPEAKER_00: He actually got on his personal cell phone and called the gastro on his personal cell phone and said, You have to repeat, you know, Cooper Baby's test.
• 17:20
  SPEAKER_00: And he goes, No, no, no, we'll do a Barry amenoma.
• 17:22
  SPEAKER_00: No, Barry Menema is not gonna tell me anything.
• 17:24
  SPEAKER_00: You need to re repeat the biopsy.
• 17:26
  SPEAKER_00: He's like, and I want it done now.
• 17:28
  SPEAKER_00: He's like, get on get on the phone and figure it out.
• 17:33
  SPEAKER_00: So he says to me, they're gonna call you.
• 17:36
  SPEAKER_00: We're gonna redo the test, we'll get answers.
• 17:39
  SPEAKER_00: But he's like, I just, I don't want I'm not gonna settle for inconclusive.
• 17:44
  SPEAKER_00: We're gonna find out what's going on.
• 17:46
  SPEAKER_00: So I'm like, okay.
• 17:48
  SPEAKER_00: Within that was Friday, within that was a Wednesday.
• 17:54
  SPEAKER_00: By Friday, we were back in for a biopsy, and the following Wednesday we were in for surgery.
• 18:02
  SPEAKER_00: Finally, we got test results back that it was positive for it's really hard to understand.
• 18:09
  SPEAKER_00: It's positive for negative gay pain cells.
• 18:11
  SPEAKER_00: So a negative is really a positive, and a positive is really a negative.
• 18:16
  SPEAKER_00: Um, so I'm like, okay, this is a lot to process.
• 18:21
  SPEAKER_00: We go in, he's getting ready for surgery, and it's like an episode of like Gray's anatomy.
• 18:28
  SPEAKER_02: And he's what, like two weeks old at this point?
• 18:30
  SPEAKER_00: Yeah, he was just under, he was just under a month by this time.
• 18:35
  SPEAKER_00: He was like three three weeks and like I think three weeks, two days, like he wasn't quite a month old.
• 18:42
  SPEAKER_00: Um, so I'm like, what is happening here?
• 18:48
  SPEAKER_00: And he comes in and he tells me, okay, you know, we're gonna go in, we're gonna do this.
• 18:54
  SPEAKER_00: And I had asked a bunch of questions because as soon as I heard the word, I was like, I need he's like, don't go on Google, don't freak out.
• 19:07
  SPEAKER_00: Google's gonna tell you horrible things.
• 19:10
  SPEAKER_00: I'm gonna go on Google.
• 19:12
  SPEAKER_00: Like, so the first thing I do is like, I need to find, I need to find other parents.
• 19:18
  SPEAKER_00: I need to find people who know beyond Google, real world experience.
• 19:24
  SPEAKER_00: So I jump on Facebook.
• 19:25
  SPEAKER_00: I'm like, they've got support groups for everything.
• 19:28
  SPEAKER_00: I f I join every single one I can find and start asking questions.
• 19:33
  SPEAKER_00: We just got results for biopsy.
• 19:35
  SPEAKER_00: We're going in for surgery.
• 19:37
  SPEAKER_00: What do I ask?
• 19:38
  SPEAKER_00: What do I need to know?
• 19:39
  SPEAKER_00: I know that I don't have a whole lot of time and I can't push this back.
• 19:45
  SPEAKER_00: And they told me all the things to ask.
• 19:47
  SPEAKER_00: How many times have they done this surgery?
• 19:49
  SPEAKER_00: What are the benefits of doing this surgery versus the other surgery?
• 19:53
  SPEAKER_00: There's two options.
• 19:54
  SPEAKER_00: They can do a pull-through, which is when they remove all of the non-working intestine and just reconnect.
• 20:03
  SPEAKER_00: Or they will do a colostomy, which is where they pull the intestine to the stomach wall wall, and you have a bag.
• 20:11
  SPEAKER_00: That gives the intestine time to heal.
• 20:13
  SPEAKER_00: And then once they're a little bit older, weigh a little bit more, then they do the pull through.
• 20:18
  SPEAKER_00: Then they reconnect everything.
• 20:21
  SPEAKER_00: And everyone's telling me, go to CHOP, go to CHOP, go to CHOP.
• 20:24
  SPEAKER_00: That's the best around.
• 20:25
  SPEAKER_00: You know, you gotta go there.
• 20:26
  SPEAKER_00: And I'm like, okay, but I but I trust this surgeon.
• 20:29
  SPEAKER_00: You know, sometimes there's good doctors, not in a specialty hospital.
• 20:34
  SPEAKER_02: And just so I asked him, I said for anyone who who doesn't know, CHOP is the children's hospital of Pennsylvania, right?
• 20:40
  SPEAKER_00: Or Chop is Children's Hospital of Philadelphia.
• 20:42
  SPEAKER_02: Philadelphia.
• 20:43
  SPEAKER_00: Yeah, yeah.
• 20:45
  SPEAKER_00: Um, so we're in New Jersey and CHOP is about, we're in central Jersey.
• 20:49
  SPEAKER_00: So CHOP is about an hour and a half, hour and 45 minutes with traffic.
• 20:54
  SPEAKER_00: So I'm like, you know, how many times have you done this surgery?
• 21:00
  SPEAKER_00: What is the benefit of doing this surgery versus this surgery?
• 21:03
  SPEAKER_00: I said, because I know that I know that in CHOP they will do the straight pull through.
• 21:10
  SPEAKER_00: And then, as doctors sometimes do, his first instinct was to be kind of offended that I was asking these questions.
• 21:20
  SPEAKER_00: And he's like, if you want to go to chop, you can go to chop.
• 21:24
  SPEAKER_00: I was like, slow down.
• 21:27
  SPEAKER_00: I didn't say I want to go to chop.
• 21:29
  SPEAKER_00: I'm asking, is this something that you do all the time?
• 21:33
  SPEAKER_00: Is this a surgery you perform often on my not yet a month-old baby?
• 21:41
  SPEAKER_00: And what is the benefit of doing the way that you prefer to do it versus doing one surgery?
• 21:49
  SPEAKER_00: So why should I choose two surgeries for an infant over one?
• 21:53
  SPEAKER_00: How does this benefit him?
• 21:55
  SPEAKER_00: And he says, Okay, well, this is why I do it.
• 21:59
  SPEAKER_00: And he explained that statistically children who have the colostomy and allow that time for their intestines to heal have the pull through and they're successful.
• 22:21
  SPEAKER_00: Oftentimes children who go right from the pull through just The intestine removal and pulling through, reconnecting, have trouble down the line and have to have a repeat pull through.
• 22:32
  SPEAKER_00: So one surgery in theory sounds good, but ends up becoming more.
• 22:40
  SPEAKER_00: So I said, okay, I'm on board with doing it the right way, even if that means two.
• 22:49
  SPEAKER_00: That's fine.
• 22:50
  SPEAKER_00: So we stayed obviously with them and we went through with the surgery.
• 22:55
  SPEAKER_00: And then that morning it was like, like I said, like an episode of Gray's Anatomy.
• 23:00
  SPEAKER_00: Interns are coming in from here, right and left.
• 23:02
  SPEAKER_00: I have to sign away my life, basically.
• 23:05
  SPEAKER_00: Yes, you can watch.
• 23:06
  SPEAKER_00: Yes, you can watch.
• 23:07
  SPEAKER_00: And like here I am, like, why are all these people going to be in here?
• 23:11
  SPEAKER_00: And you're like, well, isn't this distracting?
• 23:14
  SPEAKER_00: You know, is this taking away from my child's surgery?
• 23:16
  SPEAKER_00: But at the same time, here I am, a new parent of rare disease, and a product of a failed system where they failed him for almost a month.
• 23:30
  SPEAKER_00: And I didn't even know what I was fighting for.
• 23:33
  SPEAKER_00: And luckily, this surgeon fought for him as well.
• 23:37
  SPEAKER_00: And more people need to know what this is.
• 23:42
  SPEAKER_00: These kids, these young surgeons, these young interns had never even heard this word.
• 23:46
  SPEAKER_00: Had never even heard this word.
• 23:48
  SPEAKER_00: And now they're operating or watching an operation on a three and a half week old because they have no choice.
• 23:57
  SPEAKER_00: They're never going to see this surgery again for maybe years.
• 24:02
  SPEAKER_00: And so I'm yesing everybody to death.
• 24:05
  SPEAKER_00: Yes, go watch.
• 24:06
  SPEAKER_00: Please learn more.
• 24:07
  SPEAKER_00: Don't do this to another kid.
• 24:10
  SPEAKER_00: And they told me it should be about two to three hours.
• 24:16
  SPEAKER_00: And it was like the longest five hours of my life because he came out about halfway through and said, listen, you know, we've gone up about halfway through his intestine.
• 24:29
  SPEAKER_00: And what we're doing is instead of pulling where we think it's going to be good, we're sending it to the lab and having it tested and tested and tested.
• 24:40
  SPEAKER_00: He's like, but we keep going further and further up.
• 24:43
  SPEAKER_00: I'm waiting for the next set to come back.
• 24:45
  SPEAKER_00: I'm pretty sure that that's gonna be fine and that we're gonna be all clear.
• 24:50
  SPEAKER_00: And I'm gonna set the colostomy.
• 24:52
  SPEAKER_00: And he literally showed me tick pictures of my son's intestines on the table.
• 24:57
  SPEAKER_00: And he's like, You're gonna be okay to see this.
• 24:59
  SPEAKER_00: And I'm like, yeah.
• 25:00
  SPEAKER_00: And then I'm like, that's a lot.
• 25:03
  SPEAKER_00: And he's like, well, say that your lower intestine is like 80 centimeters.
• 25:09
  SPEAKER_00: Sorry, say that your lower intestine has been like 80 centimeters.
• 25:13
  SPEAKER_00: We took about a little more than 40.
• 25:16
  SPEAKER_00: And I'm like, wow, you just took half of my kids' intestines?
• 25:22
  SPEAKER_00: And he's like, Well, you know, over time it's gonna stretch and grow.
• 25:26
  SPEAKER_00: And I'm like, But only half of it is gonna stretch and grow now.
• 25:31
  SPEAKER_00: He's like, he's gonna be fine, he's gonna be fine.
• 25:34
  SPEAKER_00: He said, I'm gonna go back, see if the results are back yet.
• 25:38
  SPEAKER_00: We should be done soon.
• 25:40
  SPEAKER_00: Okay, fine.
• 25:42
  SPEAKER_00: He went right back to the NICU because he left the NICU and he was less than 30 days old.
• 25:52
  SPEAKER_00: He went back to the NICU, but he was in an isolation room because technically he left the NICU into the real world and game back.
• 26:00
  SPEAKER_00: They had to isolate him, which is fine, whatever.
• 26:02
  SPEAKER_00: We had our own private room.
• 26:04
  SPEAKER_00: That was nice for me.
• 26:06
  SPEAKER_00: So that was his first surgery.
• 26:09
  SPEAKER_00: And then we had to wait until he hit like 13 pounds, except that we had some complications with his colostomy, um, where it was prolapsing.
• 26:20
  SPEAKER_00: So like it wanted to shoot out like, you know, like those crazy balloon guys like wiggle, it just shoots out like that, basically.
• 26:27
  SPEAKER_00: But it's in his guts.
• 26:29
  SPEAKER_00: So I'm like, um, you know, we shouldn't be doing this.
• 26:32
  SPEAKER_00: He's like, no, you know, we can fix that, but because we're not planning to keep a colostomy, you know, we don't want to put him through that.
• 26:43
  SPEAKER_00: It's not necessary.
• 26:45
  SPEAKER_00: We'll bump up his pull through a little bit.
• 26:48
  SPEAKER_00: Um, and that's what they did.
• 26:50
  SPEAKER_00: They bumped up his pull through a little bit.
• 26:52
  SPEAKER_00: So he was not quite five months when we did his reconnection.
• 26:57
  SPEAKER_00: They did the colostomy takedown.
• 27:00
  SPEAKER_00: So that was no longer open, nothing.
• 27:03
  SPEAKER_00: Because sometimes they'll leave that open just in case after surgery and then go back in and take it down.
• 27:08
  SPEAKER_00: They took it down.
• 27:08
  SPEAKER_00: He said it was a blessing in disguise that he prolapsed because it kind of stretched that area a little bit and made it easier to reconnect.
• 27:16
  SPEAKER_00: I'm like, okay, silver lining, however you want to look at it.
• 27:19
  SPEAKER_00: Um, but that surgery was also another three and a half, four hours.
• 27:25
  SPEAKER_00: Not quite as long, not as extensive, because they had already gone through the intestine that wasn't working.
• 27:31
  SPEAKER_00: And that's basically what Herschbrung's is so your intestines essentially develop when around like eight weeks gestation, eight to like 12 weeks gestation.
• 27:44
  SPEAKER_00: The nerve cells start at your mouth, go all the way through intestine, and end at your bottom.
• 27:50
  SPEAKER_00: And for whatever reason, there is no explanation.
• 27:54
  SPEAKER_00: It's a complete spontaneous mutation.
• 27:58
  SPEAKER_00: The ganglion cells just stop developing and they are not there.
• 28:02
  SPEAKER_00: So without those, your intestines are constantly doing this, and they're it's like a wave, and they're constantly pushing everything through.
• 28:09
  SPEAKER_00: And that's that's how we digest, it's how everything flows, that's how everything exits once it enters.
• 28:16
  SPEAKER_00: With these kids, it's like flow, flow, flow, just limp noodles.
• 28:22
  SPEAKER_00: And they expand, expand, expand, expand, expand.
• 28:28
  SPEAKER_00: And oftentimes what happens is they will burst, and these kids end up septic, or even worse, they do not survive it because they go two, three years maybe with oh, he's just constipated.
• 28:46
  SPEAKER_00: Oh, he's just constipated, and they try all these different laxatives and they try all these enemas, and essentially they they appear to be working, but they're really not.
• 28:59
  SPEAKER_00: And they go this whole period and they end up really, really sick because of it, which is unfortunately um one of our friends that happened to.
• 29:14
  SPEAKER_00: I had one day gone on Facebook, and there were all these messages.
• 29:21
  SPEAKER_00: Oh, Michelle, you have to talk to this mom.
• 29:23
  SPEAKER_00: Oh, Michelle, you have to talk to this mom.
• 29:24
  SPEAKER_00: Her son was just diagnosed.
• 29:26
  SPEAKER_00: It's such a crazy story.
• 29:29
  SPEAKER_01: I I want to say he was like three or four already.
• 29:37
  SPEAKER_00: And this poor kid, um, they didn't catch it.
• 29:42
  SPEAKER_00: And his intestines were so like expanded that they ruptured.
• 29:48
  SPEAKER_00: And so now he's in the hospital dealing with all of that emergency surgery, and then doing the testing, and then getting diagnosed.
• 29:56
  SPEAKER_00: And in retrospect, he had been in for x-rays of other things, and they could see it at the bottom of those x-rays, and never said anything.
• 30:06
  SPEAKER_00: Because they pulled up all of this previous x-rays, and they're like, Well, yeah, he was he was impacted here, he was impacted there.
• 30:15
  SPEAKER_00: So I at the time also was working for a um a pulmonologist and a cardiologist, and I asked, because they're in specialties, right?
• 30:30
  SPEAKER_00: So I asked the one doctor, and I was like, you know, just out of curiosity, in medical school, what happens when you learn about these diseases?
• 30:40
  SPEAKER_00: And he's like, they're like one or two lines in a book, and you know, you're probably never gonna see them.
• 30:47
  SPEAKER_00: And I asked him specifically about Hirschsprungs, and he goes, Oh, yeah, there was like this one little paragraph, and basically it was um, you know, the child can't stool.
• 30:59
  SPEAKER_00: And if they can, it's not that I'm like, oh, that's good to know.
• 31:05
  SPEAKER_00: Because that's not true.
• 31:06
  SPEAKER_00: And he's like, Whoa, what do you mean?
• 31:08
  SPEAKER_00: And I was like, Well, my son was going to the bathroom and he has it.
• 31:13
  SPEAKER_00: And all of my doctors around me were telling me this.
• 31:16
  SPEAKER_00: My OB was telling me this, oh, it can't be that, it can't be that.
• 31:19
  SPEAKER_00: The pediatrician's like, oh no, no, no.
• 31:22
  SPEAKER_00: The girl at the front desk at the pediatrician was like, Oh, my son has this, it's no big deal.
• 31:26
  SPEAKER_00: Like, it's like a little laxative and he's fine.
• 31:28
  SPEAKER_00: And I'm like, um, I don't know what the hell, doctor, you have, but you better go take that child to a real one because you're gonna end up in a real bad situation.
• 31:41
  SPEAKER_00: So I left that pediatrician and didn't even look back, and I'm like, no.
• 31:46
  SPEAKER_01: Mm-mm.
• 31:48
  SPEAKER_00: And I started asking around doctors who have seen patients like this before, they pick doctors who are aware of this disease.
• 31:58
  SPEAKER_00: And the one that we are with now was came very highly recommended.
• 32:03
  SPEAKER_00: Um, and we're happy we've been there ever since.
• 32:06
  SPEAKER_00: But my issue still to this day is that these doctors are still not being taught anything about rare diseases, and they're not being pushed towards these specialties either.
• 32:21
  SPEAKER_00: So, in within these um support groups that I'm in, you you hear the same name over and over and over again.
• 32:30
  SPEAKER_00: You have to go to Dr.
• 32:31
  SPEAKER_00: Levitt, you have to go to Dr.
• 32:32
  SPEAKER_00: Levitt, you have to go to Dr.
• 32:33
  SPEAKER_00: Levitt.
• 32:34
  SPEAKER_00: This man travels all over the world.
• 32:35
  SPEAKER_00: He is the top doctor in the world for this disease.
• 32:40
  SPEAKER_00: And he has nonstop trained any surgeon that will come to his path.
• 32:48
  SPEAKER_00: Um, so in his wake in the US, he leaves a very nice trail of very highly recommended skilled surgeons who worked very closely with him.
• 32:58
  SPEAKER_00: And that's amazing because people come from all over the world to see this doctor because you have no other options.
• 33:07
  SPEAKER_00: You have no other options.
• 33:08
  SPEAKER_00: He started out at um, I think California was the first hospital, I don't remember the name of it, that he started out in.
• 33:19
  SPEAKER_00: And then he moved to Children's National in Ohio.
• 33:23
  SPEAKER_00: And at that point was when we were um our first surgeon was retiring, and we were kind of like, I don't know, what do we do?
• 33:32
  SPEAKER_00: Where do we go from here?
• 33:33
  SPEAKER_00: And he's like, no, no, he's gonna be fine, he's gonna be fine.
• 33:36
  SPEAKER_00: And I'm like, you say that, but I'm learning from all these parents that no, this is a lifelong thing.
• 33:45
  SPEAKER_00: You can't surgery helps correct the issue, right?
• 33:52
  SPEAKER_00: But he still has a gene mutation that there's nothing has changed about that.
• 33:57
  SPEAKER_00: So the way that the rest of his intestine works may not necessarily be the same as everybody else is.
• 34:03
  SPEAKER_00: It may be too slow, it may be too fast, it may be sporadic.
• 34:09
  SPEAKER_00: Like, so I'm like, okay, I know in the back of my mind I need to be prepared at all times.
• 34:16
  SPEAKER_00: So I kind of like has been stalking this doctor for the past 12 years.
• 34:21
  SPEAKER_00: Um, I had kept my eye on it, and then I had heard very good things about um Children's Hospital Philadelphia.
• 34:29
  SPEAKER_00: And there was also a colorectal center in Delaware.
• 34:33
  SPEAKER_00: And I'm like, okay, these are my options.
• 34:34
  SPEAKER_00: I need to find out who's within my insurance, and if not, who's gonna be our better option to go out of network with?
• 34:43
  SPEAKER_00: And luckily, because Children's Hospital has of Philadelphia has so many satellite offices in New Jersey, most of our insurances cover top.
• 34:54
  SPEAKER_00: And the way that our insurance is worded also states that if there is a specialist, a need for a specialist that is not within your coverage area, they will cover to go outside.
• 35:12
  SPEAKER_00: So I'm like, okay, I need to be like equipped with all these tools.
• 35:17
  SPEAKER_00: So we went, we ended up going to CHOP, and we've had an amazing experience with them.
• 35:24
  SPEAKER_00: The first time we went, it's more because um, you know, when you can when you sever a body part or an organ and you reconnect, it's kind of the same, but it's never really the same.
• 35:41
  SPEAKER_00: So it doesn't always work.
• 35:43
  SPEAKER_00: Those muscles that tell us, like they send a signal to our brain and we're like, oh, gotta go to the bathroom.
• 35:49
  SPEAKER_00: He doesn't have those, those are gone.
• 35:51
  SPEAKER_00: So he has to learn new ways to do it.
• 35:53
  SPEAKER_00: And that's kind of hard to explain to a three-year-old, you know, especially when you're at like potty training time.
• 36:00
  SPEAKER_00: And, you know, now, next thing you know, you have a five-year-old who's still in pull-ups because there is there is no time to go, and there is like literally a leaky faucet all day long.
• 36:13
  SPEAKER_00: And kids are mean, you know, so we do the best that we can to, you know, keep him clean and however, you know, you need to be, but you can only do so much, and then they're gonna enter school, right?
• 36:29
  SPEAKER_00: And then they're away from you for six hours, and you have no control over what happens there.
• 36:35
  SPEAKER_00: So we went to CHOP and I'm like, is there anything we can do?
• 36:40
  SPEAKER_00: What, you know, am I do we need to just give it more time?
• 36:44
  SPEAKER_00: What is happening here?
• 36:45
  SPEAKER_00: We need an assessment, we need answers.
• 36:47
  SPEAKER_00: And the first time we met with the surgeon there, um, he did all these tests, he asked all these questions.
• 36:56
  SPEAKER_00: Um, my son loved him.
• 36:58
  SPEAKER_00: He uh he's a very strange bedside manner because he's like very to the point.
• 37:04
  SPEAKER_00: Are you good?
• 37:05
  SPEAKER_00: I'm out.
• 37:06
  SPEAKER_00: Like he's gone.
• 37:07
  SPEAKER_00: Like you won't see him again till next time, and then you're left with his intern or his PA, and that's fine.
• 37:13
  SPEAKER_00: But, you know, it because he sees so many kids a day because there's not enough of them.
• 37:18
  SPEAKER_00: So he has to bounce from appointment to appointment to appointment.
• 37:21
  SPEAKER_00: But he was the sweetest old man, and my kid loved him, immediately warmed up to him, very personable when he needs to be.
• 37:33
  SPEAKER_00: He answered any questions that we had.
• 37:36
  SPEAKER_00: I came out of that appointment in tears, and I could hear one of the nurses going, Okay, guys, mom, mom is crying, so be gentle, set up the appointment, you know.
• 37:50
  SPEAKER_00: And I'm like, I can hear them, so like be gentle, like you're, you know, maybe whisper next time.
• 37:56
  SPEAKER_00: But I'm like, no, no, no, it's okay.
• 37:57
  SPEAKER_00: It's happy tears, it's happy tears.
• 37:59
  SPEAKER_00: And they're like, okay, looking at me like I'm crazy, like you're you're here for a rare disease and you're happy crying on your way to your next appointment.
• 38:07
  SPEAKER_00: And I'm like, you don't understand.
• 38:09
  SPEAKER_00: I said, we've been through so many doctors, so many things, and every single time I go for any kind of test, I have to explain to them what they're supposed to be doing.
• 38:22
  SPEAKER_00: I have to explain to the technician why we're here, what he has, what we're doing, what you are supposed to be looking for.
• 38:28
  SPEAKER_00: And this is the first time I've ever come here or anywhere, and you explained it to me instead.
• 38:38
  SPEAKER_00: And I'm like, instantly, this weight is off of your shoulders because you have to fight so hard all the time.
• 38:45
  SPEAKER_00: And I'm just like, holy crap, I can finally relax.
• 38:49
  SPEAKER_00: We are in good hands, we're gonna get somewhere.
• 38:52
  SPEAKER_00: And we did, we did awesome there at CHAP until probably about like fourth grade or so.
• 39:00
  SPEAKER_00: And then I'm like, you know, we did talk to him about um a mace procedure.
• 39:07
  SPEAKER_00: What we were doing throughout school was called irrigations, right?
• 39:12
  SPEAKER_00: It's like an enema, but more the tube goes much higher and does the same thing essentially.
• 39:22
  SPEAKER_00: You're just shooting saline up there and washing everything out.
• 39:26
  SPEAKER_00: And that was to keep him clean during the day so that he didn't have any embarrassing accidents at school.
• 39:33
  SPEAKER_00: But we could only do that so many times a week without irritating his intestines.
• 39:41
  SPEAKER_01: So every other day, he's now having issues because on the off days, he's not staying clean as long.
• 39:50
  SPEAKER_00: And I'm like, there's gotta be something else we can do.
• 39:52
  SPEAKER_00: And they said, well, because he does well with those, he's a good candidate for an ACE procedure, which is um it's an appendicostomy.
• 40:03
  SPEAKER_00: It's like a colostomy, but it's through your appendix and it's a tiny little tube.
• 40:07
  SPEAKER_00: It's similar to what they do for kids who are tube fed.
• 40:11
  SPEAKER_00: It's a tiny little button on their belly, and like you would feed them through this tube, but instead we do irrigations through this tube instead of having to do them manually through the bottom.
• 40:24
  SPEAKER_00: And you just shoot saline and it cleans them out, and that we can do every day.
• 40:30
  SPEAKER_00: So we talked to him about it, and then I was like, you know, I should really look into Dr.
• 40:39
  SPEAKER_00: Levitt because I had heard he moved closer.
• 40:42
  SPEAKER_00: I looked him up.
• 40:43
  SPEAKER_00: He was in Washington, D.C.
• 40:45
  SPEAKER_00: And I'm like, the more I think about it, that's the closest we're gonna get.
• 40:49
  SPEAKER_00: We're not gonna have an opportunity where he's like, hey, we're in New Jersey now.
• 40:52
  SPEAKER_00: That's not gonna happen, right?
• 40:53
  SPEAKER_00: Maybe New York.
• 40:54
  SPEAKER_00: He's not gonna come to New Jersey.
• 40:57
  SPEAKER_00: So I'm like, I think we really need to reach out.
• 41:01
  SPEAKER_00: I think we really need to reach out.
• 41:03
  SPEAKER_00: Then this whole article comes out where there's this new procedure where they're doing sphincter reconstruction for these kids, for these kids who'd have the there is no waiting.
• 41:17
  SPEAKER_00: There is no, oh, I gotta go.
• 41:19
  SPEAKER_00: They don't know.
• 41:20
  SPEAKER_00: And they're rebuilding these muscles so that these kids can be normal and have that sensation and be able to physically move those muscles that they never had before.
• 41:36
  SPEAKER_00: And it was Dr.
• 41:38
  SPEAKER_00: Levitt.
• 41:39
  SPEAKER_00: And I was like, holy shit.
• 41:41
  SPEAKER_00: If that's not a sign, then I don't know what is.
• 41:45
  SPEAKER_00: And this was a long process.
• 41:47
  SPEAKER_00: I just literally got his phone number from a support group and called it.
• 41:53
  SPEAKER_00: And a nurse answers the phone and she's like, hey, you know, how can I help you?
• 41:58
  SPEAKER_00: And I said, My son has Hirschsprungs, and the hospital that we're at is great, but I feel like we need more.
• 42:10
  SPEAKER_00: We're still having issues, and we don't know where else to go.
• 42:15
  SPEAKER_00: Okay, no problem.
• 42:16
  SPEAKER_00: This is what we're gonna do.
• 42:17
  SPEAKER_00: I'm gonna send you all this paperwork.
• 42:19
  SPEAKER_00: You're gonna fill it out.
• 42:21
  SPEAKER_00: You're going to get every single file on your child since the day he was born.
• 42:26
  SPEAKER_00: Every blood work, every x-ray, every barium minima, every procedure, all of it.
• 42:32
  SPEAKER_00: So I spent two weeks gathering all of that.
• 42:35
  SPEAKER_00: Our surgeon from when he was born was amazing at that.
• 42:39
  SPEAKER_00: I always got a physical copy of those surgeries and his reports.
• 42:45
  SPEAKER_00: So I didn't even have to like go digging for those.
• 42:48
  SPEAKER_00: The only thing I had to go digging for was like blood work and x-rays and stuff.
• 42:52
  SPEAKER_00: So I send all of this, and then what happens is they present every Tuesday, they have a meeting with their whole team, and they present cases and rank them in order of necessity, and can this be dealt with somewhere else?
• 43:11
  SPEAKER_00: We need to take the top priorities.
• 43:13
  SPEAKER_00: And I got a phone call a week later saying, hey, Dr.
• 43:17
  SPEAKER_00: Levitt has agreed to take your case.
• 43:19
  SPEAKER_00: We're gonna set up a visit for you.
• 43:22
  SPEAKER_00: So what essentially what they did was because you're coming from out of state, we're gonna try and plan it all within a couple of days so that you'll be here probably about a week.
• 43:33
  SPEAKER_00: Um, you may be here a little bit longer because Dr.
• 43:36
  SPEAKER_00: Levitt thinks that he's a candidate for this new surgery.
• 43:39
  SPEAKER_00: Like, holy shit.
• 43:41
  SPEAKER_00: So they planned it so that we were there Monday, Tuesday for testing.
• 43:48
  SPEAKER_00: Depending on those testing, we would decide on what test we would need to do on Thursday.
• 43:54
  SPEAKER_00: And from there, we had surgery scheduled for Monday.
• 43:59
  SPEAKER_00: So we had like this whole week planned out, and then that surgery we knew that we would have to be in the hospital, hospital for about five days.
• 44:07
  SPEAKER_00: So we knew we were going to be in DC for about two weeks.
• 44:09
  SPEAKER_00: I notified the school.
• 44:11
  SPEAKER_00: I had his 504 redone, um, which is his plan in school that it's his basically his medical plan saying what he needs.
• 44:19
  SPEAKER_00: It's kind of like an IEP, but um, it's usually parent driven and it's A lot more oftentimes medical versus academic.
• 44:29
  SPEAKER_00: So we adjusted his 504 plan to include that for every day that he misses school because of his rare disease, he's entitled to home instruction for one hour.
• 44:45
  SPEAKER_00: So they have a teacher come right to us.
• 44:49
  SPEAKER_00: And it was one of his, you know, fifth grade teachers that came to the house.
• 44:54
  SPEAKER_00: So like she knew him.
• 44:55
  SPEAKER_00: She knew what they were specifically working on.
• 44:57
  SPEAKER_00: It wasn't like, you know, because you could end up with a teacher from another school.
• 45:00
  SPEAKER_00: You could end up with somebody who has no idea what they're actually doing and is just kind of like going on what the teachers are saying.
• 45:07
  SPEAKER_00: Oh, he needs to catch up on this, this, and this.
• 45:10
  SPEAKER_00: She was actually able to speak to his teacher directly and say, hey, I'm going to see him today.
• 45:16
  SPEAKER_00: What is he behind on?
• 45:18
  SPEAKER_00: And well, he's caught up in math.
• 45:20
  SPEAKER_00: Um, go over a little bit in science with him.
• 45:22
  SPEAKER_00: And, you know, she already knows what they're doing in science because they're all doing the same thing.
• 45:27
  SPEAKER_00: So that was all awesome.
• 45:29
  SPEAKER_00: Um, so they knew that we were planning to be gone for two weeks.
• 45:32
  SPEAKER_00: We ended up, because Murphy's Law, if it can go wrong, it will.
• 45:37
  SPEAKER_00: We ended up out of school for almost two months.
• 45:40
  SPEAKER_00: So we went to DC, everything went great, better than expected.
• 45:45
  SPEAKER_00: He did not need to have that surgery.
• 45:47
  SPEAKER_00: So, what we, because surgery was already booked, we opted to do the less invasive Malone, which was the appendicostomy.
• 45:55
  SPEAKER_00: So he would have the little button just to do irrigations.
• 45:58
  SPEAKER_00: Because when they did one of the tests, they found that he does have muscle control there, where most kids do not.
• 46:05
  SPEAKER_00: He does actually have very good muscle control.
• 46:07
  SPEAKER_00: Um, so now it's just a matter of that brain reconnection and learning how to do that.
• 46:14
  SPEAKER_00: And the reason that his brain was never making that connection is because we were doing the irrigations through the bottom.
• 46:22
  SPEAKER_00: It didn't really have to learn because it was, it had that like crutch essentially.
• 46:28
  SPEAKER_00: So we ended up with the mini ace, they call it, and it's in his belly button.
• 46:33
  SPEAKER_00: So nobody will ever even know it's there.
• 46:35
  SPEAKER_00: You can't see it.
• 46:37
  SPEAKER_00: Um, he prefers to have the device there, but at this point he no longer needs it.
• 46:43
  SPEAKER_00: Um it's like a security blanket for him.
• 46:47
  SPEAKER_00: I so I don't care.
• 46:48
  SPEAKER_00: Dude, you do you.
• 46:50
  SPEAKER_00: If you're comfortable, we're comfortable.
• 46:52
  SPEAKER_00: So what happened when they went in is that they found during the surgery, they found that his intestines were actually twisted in three different places from previous surgeries.
• 47:05
  SPEAKER_00: So they had to disconnect, untwist, and reconnect.
• 47:10
  SPEAKER_00: So that as he grew, it didn't continue to twist and cause a problem later down the line, um, which is a typical thing for these kids, especially if it expands or moves around and twists, like it will um estrangulate.
• 47:30
  SPEAKER_00: So we do not want that.
• 47:31
  SPEAKER_00: Um so his recovery was very, very tough.
• 47:36
  SPEAKER_00: We had we had a rough time with recovery and a lot of skin because he's four this is when he was in about fourth grade.
• 47:44
  SPEAKER_00: He was in fifth grade.
• 47:45
  SPEAKER_00: This is when we went to DC.
• 47:47
  SPEAKER_00: So it was it was not this past school year, it was the year before.
• 47:51
  SPEAKER_00: So he was in fifth grade because I wanted to um I wanted to try to alleviate that for him anything that we can before he went to middle school.
• 48:03
  SPEAKER_00: Because like you think kids are mean in elementary school.
• 48:06
  SPEAKER_00: Yeah, wait till you get to middle school.
• 48:09
  SPEAKER_00: Wait till you get to middle school.
• 48:11
  SPEAKER_00: So, you know, we wanted to make sure that we were doing everything that we can so that he had a better quality of life.
• 48:21
  SPEAKER_00: Because, you know, when you have to wear pull-ups to school as a fifth grader, it's not cool.
• 48:26
  SPEAKER_00: It's not cool.
• 48:27
  SPEAKER_00: And everybody can tell, and he's been made fun of from day one.
• 48:32
  SPEAKER_00: You know, the teachers have always been very good.
• 48:34
  SPEAKER_00: They've always stayed on top of it, they always address it immediately.
• 48:38
  SPEAKER_00: But at the end of the day, it's still happening, you know.
• 48:40
  SPEAKER_00: So it's he knows that like the adults have his back, but that doesn't take the sting away, you know.
• 48:50
  SPEAKER_00: So we were in DC for a really long time.
• 48:54
  SPEAKER_00: When we came home, um, he was still kind of like traumatized.
• 48:59
  SPEAKER_00: So it was really hard to adjust going back into school.
• 49:03
  SPEAKER_00: And I kind of encouraged him to like, you know, we'll start slow.
• 49:08
  SPEAKER_00: I'll I'll take you in late after the bus rush.
• 49:11
  SPEAKER_00: You he was so scared of bumping into anybody.
• 49:13
  SPEAKER_00: What if somebody bumps my stomach?
• 49:15
  SPEAKER_00: What if something happens?
• 49:17
  SPEAKER_00: Take you in.
• 49:18
  SPEAKER_00: Everybody's already in school, you'll be the only one in the halls, you'll be fine.
• 49:22
  SPEAKER_00: And I would pick him up early before the whole bus rush at the end of the day.
• 49:27
  SPEAKER_00: It'll be fine.
• 49:28
  SPEAKER_00: And that became our routine for a little bit.
• 49:30
  SPEAKER_00: And then it was like, okay, there's only like, you know, two months left of school.
• 49:36
  SPEAKER_00: You can do this, you'll be fine.
• 49:39
  SPEAKER_00: And he got up one morning and I was like, no, we're gonna try the bus.
• 49:43
  SPEAKER_00: If you have a hard time, I will come right to school.
• 49:46
  SPEAKER_00: And he's like, okay, and he got on the bus and he was fine.
• 49:50
  SPEAKER_00: And then it was like back to normal for the rest of the year.
• 49:55
  SPEAKER_00: But that whole adjustment period was really, really tough for him.
• 50:00
  SPEAKER_00: And you know, it's just it's kind of crazy that I had to drive all the way to Washington, DC to see a doctor that knew what he was talking about.
• 50:11
  SPEAKER_00: You know, so these kids, they're they're being very underserved by doctors not knowing about these rare diseases, getting one, two lines in a medical book, and then here you go, here's your diploma, you've got a doctorate, go practice medicine.
• 50:32
  SPEAKER_00: Because I can tell you some of these doctors should not be practicing medicine at all.
• 50:36
  SPEAKER_02: And I mean, from New Jersey, right?
• 50:37
  SPEAKER_02: Washington is not that far.
• 50:39
  SPEAKER_02: When you're talking about tourism, when you're talking about a weekend fun trip.
• 50:46
  SPEAKER_02: Yeah, when it's your kid who needs a doctor, it might as well be Mars.
• 50:50
  SPEAKER_02: Yeah.
• 50:51
  SPEAKER_00: I mean And it's exhausting.
• 50:53
  SPEAKER_00: The drive is exhausting.
• 50:55
  SPEAKER_00: It's three hours if there's no traffic, right?
• 50:57
  SPEAKER_02: So it's when is there no traffic in DC?
• 51:01
  SPEAKER_00: And there is no such thing as no traffic in DC.
• 51:04
  SPEAKER_02: Right.
• 51:05
  SPEAKER_00: We stayed at Ronald McDonald House, and we were I wanna say three miles from the hospital.
• 51:19
  SPEAKER_00: It would take us 15-20 minutes sometimes to go three miles.
• 51:26
  SPEAKER_00: Can't believe it.
• 51:27
  SPEAKER_00: And like so it by the end, it doesn't even feel like it anymore because you're just like, okay, this is life now.
• 51:35
  SPEAKER_00: And you know, you're driving through DC and you're like, New York's got nothing on DC when it comes to traffic and drivers.
• 51:45
  SPEAKER_00: Let me tell you, I used to be so afraid to drive in New York in the city and be like, oh my god, I'm gonna get screwed.
• 51:55
  SPEAKER_00: Just let everybody in.
• 51:55
  SPEAKER_00: I'm never moving anywhere.
• 51:56
  SPEAKER_00: This is where I live now.
• 51:58
  SPEAKER_00: I'm like having to push through DC and like go down like Main Street.
• 52:02
  SPEAKER_00: You're just like, I'm just gonna cart down Broadway.
• 52:05
  SPEAKER_00: Who cares?
• 52:06
  SPEAKER_00: Like this is no big deal.
• 52:08
  SPEAKER_00: It's insane.
• 52:10
  SPEAKER_00: Yeah, like that trying to navigate the city, it's absolutely insane.
• 52:14
  SPEAKER_00: And we did have to do like some touristy things because you had to take his mind off of it, you know.
• 52:19
  SPEAKER_00: So, like before the surgery, he wanted to see the Martin Luther King monument.
• 52:24
  SPEAKER_00: So I'm like, let's do it.
• 52:26
  SPEAKER_00: We went, saw the monument, we took a million pictures, he did all his silly, like, I'm standing next to it.
• 52:32
  SPEAKER_00: I'm presenting the plot.
• 52:33
  SPEAKER_00: I'm like, do whatever you want, kid.
• 52:34
  SPEAKER_00: Go have the fun, you know.
• 52:36
  SPEAKER_00: And we walked for like three, four hours that day, just being a tourist.
• 52:40
  SPEAKER_00: We did all of the monuments, we got super close to the White House, close enough for me.
• 52:47
  SPEAKER_00: I was like, let's do pictures because we gotta get back to the car.
• 52:50
  SPEAKER_00: The meter only runs for like four hours.
• 52:53
  SPEAKER_00: So we did do some touristy stuff.
• 52:55
  SPEAKER_00: We went um the weekend before his surgery was um also my husband's birthday, and he was very upset that he wasn't gonna see his dad for his birthday, and he ended up coming down for the weekend.
• 53:09
  SPEAKER_01: Oh.
• 53:09
  SPEAKER_00: So we took him to the um, I want to say it's the the Udvar Hazy Museum.
• 53:19
  SPEAKER_00: Udvar Hazy, I think I'm saying that right.
• 53:22
  SPEAKER_00: I could be wrong, but it's one of the airplane museums.
• 53:26
  SPEAKER_00: Okay.
• 53:27
  SPEAKER_00: And they but that this there's two of them.
• 53:29
  SPEAKER_00: There's one right in DC, and then there's one like just outside and on the Virginia side.
• 53:34
  SPEAKER_00: It's in Virginia.
• 53:36
  SPEAKER_00: And that's the one that we took him to.
• 53:38
  SPEAKER_00: And they're free to get in, and you can pay to like do certain attractions, but you can go up in a in a real um traffic control tower.
• 53:48
  SPEAKER_01: Oh, really?
• 53:49
  SPEAKER_00: And like you, because it's one of the old hangars at the end of like the actual airport.
• 53:53
  SPEAKER_00: So like you are seeing the air, the the landing strips, the planes are coming right over you as you're driving into the parking lot.
• 54:00
  SPEAKER_00: Um, and they also had the spaceship discovery is retired there right now.
• 54:06
  SPEAKER_00: So you can see the whole thing.
• 54:09
  SPEAKER_00: And they had astronauts on teams where you can ask any questions you wanted about the spaceship and the missions and all of that.
• 54:18
  SPEAKER_00: And it was wild.
• 54:20
  SPEAKER_00: It was really, really cool.
• 54:22
  SPEAKER_00: So there's so much to do there, and it was, you know, kind of like a blessing in disguise because it kept his mind off of stuff.
• 54:29
  SPEAKER_00: So, but still, again, like we trek back and forth.
• 54:34
  SPEAKER_00: Now it's not like we don't stay for like the touristy things anymore.
• 54:40
  SPEAKER_00: We're there.
• 54:40
  SPEAKER_00: Sometimes we're there overnight, and it's drive there, go to the hospital, get dinner, drive home.
• 54:47
  SPEAKER_00: And sometimes we do it in like one like quick trip.
• 54:50
  SPEAKER_00: We just get up at three o'clock in the morning, drive down, have like a nine o'clock doctor's appointment.
• 54:55
  SPEAKER_00: We're out of there at 11:30 and we're driving home already, which is insane.
• 55:00
  SPEAKER_02: Right, because you also have three other children.
• 55:04
  SPEAKER_00: I do.
• 55:04
  SPEAKER_00: So you do have three other children, so it's exhausting and trying to coordinate their care.
• 55:12
  SPEAKER_00: So a lot of times it's not even my husband coming with me to Daisy, it's usually my mom who will come with.
• 55:21
  SPEAKER_00: And I have, you know, neighbors and my sister watching the kids or James watching the kids until um my husband gets home from work.
• 55:29
  SPEAKER_00: So, you know, it's very, it's very strange to coordinate.
• 55:35
  SPEAKER_00: It's a very weird position to be in because you can't not do it.
• 55:40
  SPEAKER_00: Like I can't I can't not take care of my kid, you know, and I'm not gonna say, well, we can't go to that doctor because it's too far away.
• 55:47
  SPEAKER_00: And, you know, your sister has dance tomorrow, and you know, your brother has karate, and like, you know, we've got school.
• 55:54
  SPEAKER_00: Like, too, too bad.
• 55:56
  SPEAKER_00: We'll figure it out.
• 55:56
  SPEAKER_01: Right.
• 55:57
  SPEAKER_00: We'll figure it out.
• 55:59
  SPEAKER_00: So that's my story.
• 56:03
  SPEAKER_00: He's doing amazing right now.
• 56:07
  SPEAKER_00: Um, this last surgery has given him so much independence, so much independence.
• 56:14
  SPEAKER_00: He can do his flush by himself.
• 56:17
  SPEAKER_00: He knows how much saline, he knows how much glycerin, he knows how to mix it, he knows how to connect all of his tubes, and he just sits there and does it himself.
• 56:27
  SPEAKER_00: Like he's the man.
• 56:29
  SPEAKER_00: Yeah.
• 56:30
  SPEAKER_00: And sometimes he just wants mom and dad.
• 56:32
  SPEAKER_00: And and you know, he just wants to know that you're like still gonna help him and you know, still sit there with him, and you know, so but quality of life has improved exponentially to have a kid walk around that essentially was walking around as a leaky faucet for almost 11 years.
• 57:00
  SPEAKER_00: Walk around confident that like I'm not this melly kid in class anymore.
• 57:05
  SPEAKER_00: You know, I'm not I don't have to run to the bathroom, I don't have to wear a pull-up.
• 57:11
  SPEAKER_00: He hasn't worn pull-ups in over a year.
• 57:14
  SPEAKER_00: For that alone is a major confidence booster, you know.
• 57:21
  SPEAKER_00: So it's it's funny to say quality of life because it's not something that you generally associate with like going to the bathroom, right?
• 57:29
  SPEAKER_00: But when people ask me how he is and how everything with DC went, and you know, is he doing well?
• 57:37
  SPEAKER_00: And I'm like, that's the first thing I say is his quality of life has exponentially improved.
• 57:48
  SPEAKER_00: And then, you know, people look at you like quality of life.
• 57:51
  SPEAKER_00: I had no idea it was that drastic.
• 57:53
  SPEAKER_00: Like, but you should know.
• 57:55
  SPEAKER_00: You should you should know because 11-year-olds don't like travel out of state to have major surgeries because their day is fine.
• 58:05
  SPEAKER_03: Right.
• 58:05
  SPEAKER_03: And can I say I think it's important for you to really hit home and and repeat repetitiously say his quality of life, because unfairly, adults really don't equate quality of life and children is saved sentence.
• 58:20
  SPEAKER_03: And that is such a horrible place as a mother to know your children aren't validated.
• 58:26
  SPEAKER_03: So I love the fact that you just the quality of life is just needs to be on repeat.
• 58:33
  SPEAKER_03: To really hit it home for people who for the person in the back, say it loud.
• 58:37
  SPEAKER_03: Um, that our kids are people.
• 58:40
  SPEAKER_03: They don't get the same respect, unfortunately.
• 58:43
  SPEAKER_03: They don't.
• 58:43
  SPEAKER_03: And this is why we have to really advocate for our children.
• 58:47
  SPEAKER_00: Yeah.
• 58:47
  SPEAKER_03: And I'm over I'm sitting here listening to you.
• 58:49
  SPEAKER_03: I'm on the verge of tears the whole day, and happy tears, sad tears, I can relate tears, like all the tears.
• 58:56
  SPEAKER_03: Yeah.
• 58:57
  SPEAKER_02: So yeah, and and I mean, obviously it is his he is the one with the medical diagnosis.
• 59:08
  SPEAKER_01: Yeah.
• 59:08
  SPEAKER_02: But it doesn't just affect him, also.
• 59:11
  SPEAKER_02: I mean you're your story is is it starts with him, but it it radiates bigger, right?
• 59:19
  SPEAKER_02: Because he has siblings, he has parents.
• 59:23
  SPEAKER_02: It's not just him who's impacted by it because you guys have to find doctors, travel out of state, fight with insurance, neighbors, friends, grandparents all chip in to help.
• 59:38
  SPEAKER_02: And it's such a wonderful thing when those things work, they come together and they work, and you have those things that you can count on.
• 59:51
  SPEAKER_02: But it also sucks knowing that if you didn't think the story would not have the the good ending that it does.
• 1:00:05
  SPEAKER_02: And that's a scary, scary thought, you know.
• 1:00:08
  SPEAKER_02: Like, so for so many people who may listen to this story and and you know, we're sitting here like, oh thank god, you know, everything worked out.
• 1:00:16
  SPEAKER_02: Like I know him, he, you know, we goof with each other, he's a good kid.
• 1:00:21
  SPEAKER_02: But for the people who don't have access to the same insurance travel, it it's heartbreaking, it's heartbreaking that not everyone's story will end up with a good ending.
• 1:00:38
  SPEAKER_02: And I think that it's important it's important for you to share your story because there's probably a whole host of people who've never even heard of this, who don't know it exists, who may be dealing with something similar and now it's like, oh wait a minute, you know, yeah, I have those symptoms, yeah, I can find out more, I can um I can learn about this.
• 1:01:04
  SPEAKER_02: But to bring it more to to bring more ears upon it because there should be access for everyone, not just for those of us who figure out how to get our shit together, you know?
• 1:01:19
  SPEAKER_02: Like you know what I mean.
• 1:01:21
  SPEAKER_02: It our medical system is just a fucking train wreck.
• 1:01:28
  SPEAKER_00: It is, it really is.
• 1:01:30
  SPEAKER_00: It's such a shame that and I sit in these support groups, and you know, these new moms coming in, and they're in the same spot that I was 12 years ago, frantic.
• 1:01:43
  SPEAKER_00: What do I ask?
• 1:01:44
  SPEAKER_00: What we don't even have a diagnosis yet, what do I do?
• 1:01:48
  SPEAKER_00: I I've never even heard this word before.
• 1:01:51
  SPEAKER_00: And you know, because it's rare, and because, you know, there's not enough information out there, these support groups form, and they really are kind of a lifesaver in themselves.
• 1:02:10
  SPEAKER_00: Because without these moms, I wouldn't have known what to ask, I wouldn't have known where to go, I wouldn't have known about Dr.
• 1:02:17
  SPEAKER_00: Levitt, I wouldn't have been stalking him for 10 years before I had the chance to ever meet him.
• 1:02:24
  SPEAKER_00: And you know, we when we started out with all of this, um we knew that we were gonna have to figure out whether or not this was going to be a private thing or a public thing or somewhere in between.
• 1:02:51
  SPEAKER_00: Because we already had a child, right?
• 1:02:54
  SPEAKER_00: So I have a three-year-old at home, and I'm in the NICU, and I'm sharing time between two children right now, and I'm going back and forth, and I'm at home in the morning with my three-year-old, and he's down for a nap with my mom, and I'm running to the hospital.
• 1:03:11
  SPEAKER_00: And he gets up and she feeds him lunch, and I'm coming back home, and then you know, it's nap time again, and then dinner, and then you know, my husband's home, and now we're going back up to the NICU.
• 1:03:22
  SPEAKER_00: And I was back and forth sometimes three, four times a day.
• 1:03:26
  SPEAKER_00: And at that point, we had a pretty good system of who was gonna be with James what day, and you know, he was little, but he knew that something was wrong.
• 1:03:39
  SPEAKER_00: He knew he had a baby brother, but he also knew he wasn't old.
• 1:03:44
  SPEAKER_00: So we decided pretty early on that we were going to be open and honest because at the end of the day, I felt like if we are private to a fault, really, this kid is always gonna think he did something wrong or that he needs to hide.
• 1:04:10
  SPEAKER_00: And he didn't do anything wrong.
• 1:04:11
  SPEAKER_00: There's nothing wrong with him, per se.
• 1:04:14
  SPEAKER_00: He he got the chin under the stick as far as a random mutation that he had nothing to do with.
• 1:04:22
  SPEAKER_00: There's no, you know, oh, I was on this medication at this trimester and it caused this.
• 1:04:28
  SPEAKER_00: There is no rhyme or reason, it's just spontaneous.
• 1:04:32
  SPEAKER_00: Now, because that gene is mutated, he has a 50% chance of passing it on to a child.
• 1:04:38
  SPEAKER_00: And a lot of times in families where you're seeing more than one child have it, they're ending up in genetic testing because it's coming from one of the parents or a family member, you know, in that line.
• 1:04:52
  SPEAKER_00: And, you know, I get parents all the time like, oh, I'm so scared to have another one.
• 1:04:58
  SPEAKER_00: Um, what if they have it too?
• 1:05:00
  SPEAKER_00: Well, I mean, you know what you're doing.
• 1:05:03
  SPEAKER_00: It's no longer a death sentence for you because you know what to look for, you know what to push for, right?
• 1:05:07
  SPEAKER_00: Number one.
• 1:05:08
  SPEAKER_00: Number two, statistically speaking, the odds of having a second child with this disease is about 12% if it's a boy, and about 6% if it's a girl.
• 1:05:25
  SPEAKER_00: It occurs more in boys than it does in girls for whatever reason.
• 1:05:30
  SPEAKER_00: Um you have a higher chance of having spontaneous twins than you do of having a second child with hearse runs.
• 1:05:38
  SPEAKER_00: So like it's scary, yeah, but like if you know the odds, it's not quite as scary.
• 1:05:46
  SPEAKER_00: And like I some families just cannot handle, you know, more than that burden.
• 1:05:53
  SPEAKER_00: And that's fine.
• 1:05:54
  SPEAKER_00: Like, you feel the need to concentrate on that, and you everybody's entitled to their own feelings and their own issues.
• 1:06:04
  SPEAKER_00: But for us, it was like I know I don't have anybody on my side of the family with it.
• 1:06:11
  SPEAKER_00: My husband knows that he doesn't have anybody in his side of the family with it, so it has to be spontaneous.
• 1:06:16
  SPEAKER_00: And statistically, we're not having another one with it.
• 1:06:20
  SPEAKER_00: And if we do, we know what to look for.
• 1:06:23
  SPEAKER_00: The nurses were very amused.
• 1:06:25
  SPEAKER_00: By every time they had one of my infants afterwards, because I have two more children after him.
• 1:06:31
  SPEAKER_00: Like, did he poop yet?
• 1:06:32
  SPEAKER_00: Did he poop yet?
• 1:06:33
  SPEAKER_00: Did she go to the bathroom?
• 1:06:34
  SPEAKER_00: Did she poop?
• 1:06:35
  SPEAKER_00: Like, and the celebrations around poop, they would be like, hmm, you guys are weird.
• 1:06:41
  SPEAKER_00: Like, no, we have a son with Hirschsprungs, and you know, he did.
• 1:06:45
  SPEAKER_03: Poop is a celebration, right?
• 1:06:47
  SPEAKER_00: And they're like, oh, we get it now.
• 1:06:49
  SPEAKER_00: We get it.
• 1:06:49
  SPEAKER_00: Like, okay, we're very excited then.
• 1:06:51
  SPEAKER_00: We're very excited for poop papers.
• 1:06:53
  SPEAKER_00: And, you know, so after that, it was just kind of like it was part of our daily thing.
• 1:07:01
  SPEAKER_00: You know, the little kids know everybody knows within our family unit about it.
• 1:07:07
  SPEAKER_00: And he really liked it's because he's very shy.
• 1:07:13
  SPEAKER_00: And I don't know if it's because of that or just his personality.
• 1:07:17
  SPEAKER_00: Um, he doesn't like to tell people, he doesn't like to tell friends, whatever.
• 1:07:22
  SPEAKER_00: And we're like, dude, that's up to you.
• 1:07:24
  SPEAKER_00: You don't have to tell anybody that you don't want to tell.
• 1:07:26
  SPEAKER_00: You want to keep it between you and the teachers and the nurse.
• 1:07:29
  SPEAKER_00: Cool.
• 1:07:30
  SPEAKER_00: But again, you didn't do anything wrong.
• 1:07:32
  SPEAKER_00: It's not that big of a deal.
• 1:07:35
  SPEAKER_00: It this is all your comfort level, right?
• 1:07:39
  SPEAKER_00: But at home, like his brothers and his sister know.
• 1:07:43
  SPEAKER_00: Like it's grandparents, no, his cousins know.
• 1:07:46
  SPEAKER_00: Everybody knows it's not a big deal.
• 1:07:48
  SPEAKER_00: This is just part of our life, you know.
• 1:07:51
  SPEAKER_00: Um, I have three boys, so like even without that, like farts are a daily comp uh daily conversation.
• 1:07:58
  SPEAKER_00: You know, everybody farts, everybody poops.
• 1:08:01
  SPEAKER_00: It's not that big of a deal.
• 1:08:02
  SPEAKER_00: And this is, you know, farting is life around here.
• 1:08:06
  SPEAKER_00: Like, you know.
• 1:08:08
  SPEAKER_00: And it's like, oh, did you do that on purpose?
• 1:08:10
  SPEAKER_00: No, just slipped out.
• 1:08:11
  SPEAKER_00: Like, yeah, okay, no, you did it on purpose.
• 1:08:13
  SPEAKER_00: Like the fact that we know he can now, we're like, uh, no, no, no, no.
• 1:08:18
  SPEAKER_00: You know, so like it's just you have to find that level of of comfort really with it.
• 1:08:26
  SPEAKER_00: I know that like it needs to be out there, it needs to be talked about because if it's not, then the next kid gets looked over.
• 1:08:34
  SPEAKER_00: You know, if I didn't let all of those interns in on that surgery, what happens five years down the road when they walking down the hallway and they hear a nurse say something about, oh, baby in room 5203 hasn't stooled in 48 hours and there's no bow sounds, and they're going, hey, wait a minute, can I see that chart?
• 1:08:57
  SPEAKER_00: If it helped one more kid, then I don't care if there's 20 of you in there.
• 1:09:04
  SPEAKER_00: I don't.
• 1:09:06
  SPEAKER_00: And that's optimum.
• 1:09:07
  SPEAKER_03: I've always liked teaching hospitals for that reason.
• 1:09:12
  SPEAKER_00: Yeah.
• 1:09:12
  SPEAKER_00: And people like are so against, you know, there's you're you're either for or you're against it because you're like, I don't want a teaching hospital because they're not gonna take care of me because they're too busy messing up and they're gonna give me some intern that's gonna cut me sideways.
• 1:09:27
  SPEAKER_00: Like, yes and no.
• 1:09:30
  SPEAKER_03: Right.
• 1:09:31
  SPEAKER_03: But like I always thought teaching hospitals gave you the exact I mean, there's the like hubris, you know, never mind that.
• 1:09:37
  SPEAKER_03: But you they have the latest equipment that they that the the newest research, the newest studies.
• 1:09:43
  SPEAKER_03: They wanted they want to do more, they want to learn more, they want to be a name.
• 1:09:47
  SPEAKER_02: And because it's a teaching hospital, it tends to be more eyes on the issue.
• 1:09:53
  SPEAKER_02: And that's how I felt.
• 1:09:54
  SPEAKER_00: I was like, the more eyes, the better.
• 1:09:57
  SPEAKER_00: The more of these surgeons out here that know that this is real, this happens, even if you only see it every few years, you need to know how to handle it because it's it's gonna happen again in your lifetime.
• 1:10:11
  SPEAKER_00: It's gonna happen again, even if it's only once or twice.
• 1:10:15
  SPEAKER_00: So, you know, that's how I feel about it.
• 1:10:22
  SPEAKER_02: It's a lot.
• 1:10:23
  SPEAKER_02: It's it it is a lot.
• 1:10:25
  SPEAKER_02: I mean, listen, we're all parents, right?
• 1:10:27
  SPEAKER_02: Just parenting is a lot, so to add that on is is a lot, and you know, but you're doing a great job.
• 1:10:37
  SPEAKER_02: I mean, shit, like you just you having to advocate for care for one of your kids is a lot in general.
• 1:10:48
  SPEAKER_02: And then for it to be something that's so rare that's not diagnosed, misdiagnosed, I'm I'm tired for you.
• 1:10:59
  SPEAKER_02: I mean and I know you barely sleep, and that now I I feel like I have a better idea of why.
• 1:11:07
  SPEAKER_00: Yeah.
• 1:11:08
  SPEAKER_00: Yeah.
• 1:11:09
  SPEAKER_00: It definitely did not help my insomnia, that's for sure.
• 1:11:13
  SPEAKER_02: But I I am really appreciative of you being here and sharing your story.
• 1:11:19
  SPEAKER_02: And I and I hope that it does help someone else, you know, or or help get the information to people who might need it.
• 1:11:28
  SPEAKER_00: Well, I love that you guys had me on.
• 1:11:30
  SPEAKER_00: I was so nervous.
• 1:11:32
  SPEAKER_00: Uh-huh.
• 1:11:32
  SPEAKER_02: I was like, I don't know.
• 1:11:34
  SPEAKER_02: Oh, stop it.
• 1:11:36
  SPEAKER_00: This is my first time talking like in person and not like in a support group.
• 1:11:40
  SPEAKER_00: Uh-huh.
• 1:11:41
  SPEAKER_00: Like via Facebook, realistically.
• 1:11:44
  SPEAKER_02: So well, for most of the people.
• 1:11:47
  SPEAKER_02: I'm my own worst critic.
• 1:11:49
  SPEAKER_02: Oh, we all are, aren't we?
• 1:11:50
  SPEAKER_03: I mean, you couldn't tell.
• 1:11:53
  SPEAKER_03: You seem you're very you're very professional, and like us, we are so unprofessional.
• 1:11:58
  SPEAKER_02: I think this is the most quiet we have ever been.
• 1:12:02
  SPEAKER_03: Ever.
• 1:12:03
  SPEAKER_03: Yeah.
• 1:12:03
  SPEAKER_03: And 40 plus years.
• 1:12:04
  SPEAKER_03: So this, that.
• 1:12:09
  SPEAKER_02: Oh, you you earned yourself another mimosa.
• 1:12:13
  unknown: Two more.
• 1:12:15
  SPEAKER_00: Two more.
• 1:12:16
  SPEAKER_00: I did I didn't know how long we were gonna be up here.
• 1:12:18
  SPEAKER_00: I brought a cooler with me.
• 1:12:19
  SPEAKER_02: Oh my god, you always come prepared.
• 1:12:21
  SPEAKER_02: I love her.
• 1:12:23
  SPEAKER_02: This is too far away from the fridge.
• 1:12:26
  SPEAKER_02: And and she's the best person to go trick-or-treating with too.
• 1:12:29
  SPEAKER_00: I heard.
• 1:12:30
  SPEAKER_00: I heard.
• 1:12:33
  SPEAKER_00: Yep.
• 1:12:34
  SPEAKER_00: One of our neighbors um had moved in around like 2012 and down the street, and I didn't know they're they're actually the ones that bought my friend's house that like she moved, and they have a son, one of my son's ages, and she was like, Oh my god, I thought we were gonna meet people, like trick-or-treating, and we never did.
• 1:12:57
  SPEAKER_00: And then I see all these parents walking around and they're like, they've got drinks, and I don't know how they do that.
• 1:13:03
  SPEAKER_00: And I'm like, Oh, I'm gonna teach you.
• 1:13:06
  SPEAKER_00: I'm gonna show you how we roll in Halloween, which I stole from another neighbor, because with when you got little kids, like everybody wants to see them.
• 1:13:14
  SPEAKER_00: So, like, uh, you know, we're here, we're there, we're at one grandparents, we're at another grandparents.
• 1:13:19
  SPEAKER_00: And by the time you get done, like, you don't even have time to trigger treat.
• 1:13:22
  SPEAKER_00: I was like, Nope, that's it.
• 1:13:23
  SPEAKER_00: Everybody's coming to us.
• 1:13:24
  SPEAKER_00: You want to see the kids?
• 1:13:26
  SPEAKER_00: Then you're coming to them.
• 1:13:27
  SPEAKER_00: Um there's four of them to get them dressed and in the car and moved, but forget it.
• 1:13:32
  SPEAKER_00: And then I see my other neighbors with their their wagon carton down the street, and the kids are walking in, and nobody's in the wagon but the cooler.
• 1:13:39
  SPEAKER_00: And I'm like, I have one of those.
• 1:13:42
  SPEAKER_00: This is how we're gonna do this from now on.
• 1:13:44
  SPEAKER_00: We're gonna trick-or-treat with our drinks.
• 1:13:47
  SPEAKER_00: The kids can go until they're tired, and we won't care because we're gonna be twisted.
• 1:13:52
  SPEAKER_00: It's the nice.
• 1:13:53
  SPEAKER_00: We're good, and when they're bored, we're gonna go back to the house and then we're gonna eat, and then they can hand out candy, and we'll continue to drink, and nobody cares.
• 1:14:01
  SPEAKER_00: So she started bringing jello shots the last couple of years.
• 1:14:06
  SPEAKER_00: So we've got we've got a cooler full of like beer and white claws and jello shots.
• 1:14:12
  SPEAKER_02: And this is how we I had I had that the um the syringe one, the syringe.
• 1:14:17
  SPEAKER_02: I had pulled it out of my pocket, like before bed, and it was sitting on my night table.
• 1:14:22
  SPEAKER_02: I can't say hello, that stupid thing set on my night table before I'm like, why is this still here?
• 1:14:27
  SPEAKER_02: That's so funny.
• 1:14:28
  SPEAKER_03: I used to have a Halloween jello shot syringe in my refrigerator.
• 1:14:32
  SPEAKER_02: Then I'm like Oh no, it was empty.
• 1:14:33
  SPEAKER_02: I mean, I had eaten it.
• 1:14:34
  SPEAKER_02: It was just the the trash that I guess.
• 1:14:39
  SPEAKER_02: I mean, no, I ate it right away.
• 1:14:41
  SPEAKER_00: We stuck them right in the bowl so she could wash them and do them again.
• 1:14:44
  SPEAKER_02: I should have just done that, yeah.
• 1:14:46
  SPEAKER_00: Yep.
• 1:14:47
  SPEAKER_02: I'm gonna have to owe her a syringe.
• 1:14:50
  SPEAKER_00: She don't care.
• 1:14:51
  SPEAKER_02: Next next year I'll have to step up my Halloween game.
• 1:14:55
  SPEAKER_01: Yeah.
• 1:14:56
  SPEAKER_02: Yeah.
• 1:14:57
  SPEAKER_02: This year we had um family in town and it got a little uh you know.
• 1:15:05
  SPEAKER_02: Yeah.
• 1:15:06
  SPEAKER_02: Yeah.
• 1:15:06
  SPEAKER_02: So Halloween's a lot.
• 1:15:09
  SPEAKER_00: The kids are getting older and they want to, you know, they don't necessarily want to hang out with mom and dad.
• 1:15:14
  SPEAKER_02: No, they do not.
• 1:15:16
  SPEAKER_02: Definitely not.
• 1:15:17
  SPEAKER_02: So but um does anyone else have anything else before we wrap up?
• 1:15:26
  SPEAKER_03: I just want to thank you again for sharing your story.
• 1:15:29
  SPEAKER_02: Thank you guys.
• 1:15:31
  SPEAKER_02: This was fun.
• 1:15:32
  SPEAKER_02: Is there actually I do have a question?
• 1:15:34
  SPEAKER_02: Are there any websites or links or anything that you would recommend to anyone else who's looking for more information?
• 1:15:42
  SPEAKER_02: Like things that you found helpful?
• 1:15:45
  SPEAKER_00: Um honestly, in the very beginning, um, Mayo Clinic.
• 1:15:53
  SPEAKER_00: Mayo Clinic, M-A Yo Clinic.com, um, and maybe.gov, I'm not sure.
• 1:15:59
  SPEAKER_00: Um, they are always kind of like my go-to.
• 1:16:05
  SPEAKER_00: They um they report on a lot of medical statistics, they do a lot of research, and they kind of tend to a lot of times be on the forefront of most things medical.
• 1:16:19
  SPEAKER_00: So I do get a lot of information from them, accurate information.
• 1:16:26
  SPEAKER_00: Um, they're one of the best ones to look up anything medical, honestly.
• 1:16:30
  SPEAKER_00: Other than that, I mean, nothing, none in particular.
• 1:16:36
  SPEAKER_00: I would just say, you know, find people on support groups.
• 1:16:43
  SPEAKER_00: And I I don't really, I'm not huge on many platforms, like mostly Facebook.
• 1:16:48
  SPEAKER_00: Um, like Instagram doesn't really do like groups and stuff like that.
• 1:16:54
  SPEAKER_00: Um, so Facebook was really my go-to.
• 1:16:58
  SPEAKER_00: Just searching whatever it is that you're looking for, just search for support groups.
• 1:17:03
  SPEAKER_00: Find there's gonna be other people.
• 1:17:05
  SPEAKER_00: If if I can find support groups for Hirsprungs, you can find support groups for anything.
• 1:17:09
  SPEAKER_00: They there's literally support groups for absolutely everything under the sun on Facebook.
• 1:17:13
  SPEAKER_00: Find people that have been there, done that, and pick their brains.
• 1:17:20
  SPEAKER_00: Pick their brains, find the doctors, stalk the doctors, research the doctors.
• 1:17:25
  SPEAKER_00: I keep up with um Dr.
• 1:17:27
  SPEAKER_00: Levitt.
• 1:17:28
  SPEAKER_00: Um, and you can actually find Dr.
• 1:17:30
  SPEAKER_00: Levitt on um Instagram, and you can find um Children's National in DC on Facebook and Instagram as well.
• 1:17:41
  SPEAKER_00: And they post a lot about their coloructal center and also any other, you know, specialties that are out there.
• 1:17:49
  SPEAKER_00: There's a lot of specialties in DC.
• 1:17:52
  SPEAKER_00: Um, it's a big research hospital as well.
• 1:17:56
  SPEAKER_00: So um, yeah, I mean, Mayo Clinic is really the best one to go to for medical information in my experience.
• 1:18:07
  SPEAKER_02: So thank you.
• 1:18:11
  SPEAKER_02: As always, we remind people not to drink and drive, but to drink responsibly.
• 1:18:17
  SPEAKER_02: We also ask that you visit us at sassinsips.com for all the ways to support the show and to find out more information about any of our guests.
• 1:18:25
  SPEAKER_02: And until next time, I'm Lisa.
• 1:18:27
  SPEAKER_03: And I'm Agnes.
• 1:18:29
  SPEAKER_03: And we're out of here.
• 1:18:30
  SPEAKER_03: See you later.
• 1:18:31
  SPEAKER_03: Bye.
• 1:18:38
  SPEAKER_02: Did we freeze?
• 1:18:39
  SPEAKER_02: Did I freeze?
• 1:18:40
  SPEAKER_02: No, I'm still here.
• 1:18:44
  SPEAKER_03: I think you got it.
• 1:18:45
  SPEAKER_03: I think you froze some computer with the whole spice girl thing.
• 1:18:48
  SPEAKER_03: I did Just take the computer and shake it to the left.
• 1:18:55
  SPEAKER_01: Stupid.