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Episode 137 - With Lex · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in. Hello, and welcome to episode one hundred and
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Speaker 1: thirty seven of Tom's Hirshprungs Podcast. I'm joined by Alex
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Speaker 1: this afternoon. Welcome to the podcast. Hi, thanks so much
0:58
Speaker 1: for coming on. We've got a heck of a story
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Speaker 1: to unpack from what I gather, and it's something I'm
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Speaker 1: really looking forward to sort of delving into. But would
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Speaker 1: you like to take us well back to the beginning
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Speaker 1: with your child being diagnosed with Harshprungs all perhaps even
1:16
Speaker 1: sooner than that.
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Speaker 2: Frinky was born at thirty eight or thirty nine weeks
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Speaker 2: so he was perfectly full term bi a C section
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Speaker 2: totally planned, went perfectly well, he was eating great.
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Speaker 3: The only thing was is that could not stool.
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Speaker 2: Within the first twelve hours he was perfectly normal, but
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Speaker 2: by hour thirteen.
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Speaker 3: He was vomiting. He'd become distended, and I remember paging.
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Speaker 2: The doctor as a nurse, and it was so funny
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Speaker 2: to me now because I look back and I'm like,
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Speaker 2: why did I say that? But I was like, Hey,
1:46
Speaker 2: my kids just puked, and my kids don't pupe.
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Speaker 3: He's my second child. My kids don't puke. My kid's good,
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Speaker 3: but bugers, this is my second who knew? But I
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Speaker 3: knew that wasn't right.
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Speaker 2: And so they came and they took him and they
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Speaker 2: were looking him over and they're like, well, ll they
2:00
Speaker 2: go talk to the doctor and then we'll come back.
2:02
Speaker 2: And she comes back and they walk in and they
2:04
Speaker 2: before they even say anything, I see the nick you
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Speaker 2: badge on doc and I just knew. I just knew
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Speaker 2: they were about to take by baby's the nick you.
2:12
Speaker 2: And my heart sank because I first was a nick
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Speaker 2: you baby as well. Where I live, it's very common
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Speaker 2: for babies to need oxygen, so I first inted oxygen
2:19
Speaker 2: for the first thirteen days of his life. So to
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Speaker 2: repeat that was like a shell shock almost. That was
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Speaker 2: the worst pain that I felt, like, worse than the
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Speaker 2: sea section. So they took it to the nick you
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Speaker 2: I couldn't follow. I was so broken up about it
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Speaker 2: that I looked at my husband or my boyfriend at
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Speaker 2: the time, and I said, you know, I.
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Speaker 3: Don't want to breastfeed anymore.
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Speaker 2: We'd already discussed before I had Frankie that if he
2:46
Speaker 2: went to nick You and I couldn't latch him, I
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Speaker 2: wouldn't breastfeed, So I knew.
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Speaker 3: That was gone. And then it became well, he can't
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Speaker 3: digest formula.
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Speaker 2: We get him to the nick You and we finally
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Speaker 2: get him fed, and he's not able to do this formula.
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Speaker 2: So that's another entire thing. But we're at a hospital
3:01
Speaker 2: that can't handle him, so they rush him. They air
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Speaker 2: flight him to the Shoulder's hospital by us it's a
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Speaker 2: ten minute drive, and he was so unstable they had
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Speaker 2: to life light him. It took me a year to
3:12
Speaker 2: realize that if they life lighted him, he had to
3:15
Speaker 2: be unstable, because no insurance is just going to cover
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Speaker 2: a life light for no reason.
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Speaker 3: Oh, so we said the nick You, he's two days old.
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Speaker 3: He's in children's.
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Speaker 2: Now I'm forty eight hours postpartum and I'm rushing post
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Speaker 2: section out of that hospital, demanding to be discharged to
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Speaker 2: follow my son because I'm not going to stay in
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Speaker 2: his hospital while.
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Speaker 3: He's in another. So they discharge me. We rush and
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Speaker 3: we try to race their helicopter. Obviously we can't race
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Speaker 3: the helicopter. They get there and they're like, well, we
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Speaker 3: definitely think of turch sprunks, and I had no clue
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Speaker 3: what that was. I had never even heard of it.
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Speaker 3: Funnily enough, at least when we're asking about it.
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Speaker 2: One of the things they did and they were testing,
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Speaker 2: was they stuck a finger up him, which is horrible.
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Speaker 2: When they pulled it out, it shot across as a
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Speaker 2: new doctor that they had, so he got him on
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Speaker 2: the irrigation gown.
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Speaker 3: That was funny to me, at least.
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Speaker 2: I barely remember most of the nick us day, but
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Speaker 2: I remember that by day five he had his awesome
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Speaker 2: placed and he'd been on TPM the entire time. At
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Speaker 2: the time that they placed the ostome, they wanted to
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Speaker 2: rush and pull his pickline and take him off TPM, which.
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Speaker 3: Is IV nutrition, and I pushed back.
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Speaker 2: I didn't understand why in the moment, but my gut said,
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Speaker 2: we can't do this fast. We cannot rush feeding him,
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Speaker 2: and no one listened to me, and they rushed feeding
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Speaker 2: him anyway, and we got him home after thirty days
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Speaker 2: and he just dropped weight. He could not gain weight.
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Speaker 2: He was we were emptying his bag five or six
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Speaker 2: times a day. He was eating like he was supposed to,
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Speaker 2: and he wasn't gaining anything. So we re emitted for
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Speaker 2: a week and they kept him for a week to
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Speaker 2: make sure we were actually feeding him. At the time, they
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Speaker 2: called it monitoring, and we didn't know what was happening,
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Speaker 2: but they're monitoring his weight, they're monitoring make sure we
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Speaker 2: were actually taking care of him because he was also
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Speaker 2: on Pictor at the time. My kid has been on
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Speaker 2: thick Or his entire life. He has a we're not
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Speaker 2: sure why, but he has a swallowing difficulty.
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Speaker 3: Both my kids do. Actually they're both on a level
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Speaker 3: twoth Thictor.
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Speaker 2: So they were making sure that we were actually taking
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Speaker 2: care of him because it's never been easy. It's making
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Speaker 2: his bottles used to take thirty minutes. You'd have to
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Speaker 2: heat the milk and then add the powder, and then
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Speaker 2: wait twenty minutes for the thicken and then test it
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Speaker 2: and then.
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Speaker 3: It'd be wrong. You'd to redo the whole thing.
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Speaker 2: Luckily, we got to come home from that emit and
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Speaker 2: we stayed home for six days. Those are the best
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Speaker 2: six days in my life. He was so tiny and
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Speaker 2: little and happy. But we went back in and we've
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Speaker 2: been backing hard. We stayed for seven whole weeks.
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Speaker 3: Yeah, I that.
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Speaker 2: Was in whirlwind. I had no clue what was going on.
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Speaker 2: I didn't understand why I was feeding my kid and he.
6:00
Speaker 3: Wasn't getting weight. I was giving him his meds, he
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Speaker 3: wasn't getting weight. Nothing worked.
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Speaker 2: So they managed the surgery floor and we stay down
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Speaker 2: there for a couple of days, and I remember, she's
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Speaker 2: my best friend now, she's one of my best friends now.
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Speaker 2: But there was a nurse there and she's like, you're
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Speaker 2: really gonna leave Frankie because we leave him at night
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Speaker 2: because he sleeps in the night.
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Speaker 3: And I was like, yeah, we are. I promise he's fine.
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Speaker 2: And she judged as hard for that a lot of
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Speaker 2: them did. We've been judged very harshly. There's even a
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Speaker 2: note now in my son's chart that says mother child
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Speaker 2: has medical trauma because I have medical trauma from my
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Speaker 2: childhood and cannot stay bedside. She will also sometimes have
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Speaker 2: to walk outside of the room because don't block the
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Speaker 2: door because in the Nicue, the but I can't believe her.
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Speaker 2: I have to tell this part in the Nickue. When
6:50
Speaker 2: he was not tolerating formula, I pushed for donor breast
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Speaker 2: milk from a bank because I can't produce enough.
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Speaker 3: I've never been able to produced enough.
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Speaker 2: And the nick you doctor said no because he thought
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Speaker 2: I was gonna get unofficial donor milk from like another
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Speaker 2: mom off Facebook or something which would be dangerous in
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Speaker 2: the nick you and that's not.
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Speaker 3: What I meant.
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Speaker 2: And so they banned the use of my breast milk,
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Speaker 2: any milk that I made. They refused to feed him
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Speaker 2: because they couldn't trust the source of it. I spent
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Speaker 2: twelve hundred dollars feeding him for two weeks in the
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Speaker 2: nick you donor breast milk.
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Speaker 3: He couldn't tolerate formula. They wouldn't give me a prescription.
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Speaker 2: They wanted me to sit there and they wanted to
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Speaker 2: watch me pump, and I couldn't do it.
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Speaker 3: Like That's why that no got put theirs because they
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Speaker 3: called me a liar. They blocked the door.
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Speaker 2: I had a full of mental breakdown, like full on sobbing,
7:38
Speaker 2: couldn't talk, and then of the note got put in.
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Speaker 2: But when we admitted for seven weeks, I am all
7:44
Speaker 2: over the place he was. We were feeding him every
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Speaker 2: three hours. This kid is eighteen months old and still
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Speaker 2: is being fed every.
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Speaker 3: Three hours by bottle.
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Speaker 2: He just wasn't getting weight and he was getting be hydrated,
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Speaker 2: and they were watching him and I didn't know what
8:00
Speaker 2: was happening. Like I remember at one point, he didn't
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Speaker 2: even have a gi doctor, Like he was having all
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Speaker 2: these weight game problems and he was just being managed
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Speaker 2: by surgery and he had a great surgery team, but
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Speaker 2: that's not their job.
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Speaker 3: Their job is to cut. And so finally, at one
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Speaker 3: point I called doctor Woods in Ohio and was like
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Speaker 3: what do I do?
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Speaker 2: And he's like, well, we can't do anthing while well
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Speaker 2: he's admitted, and I'm like, what do I do? Though,
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Speaker 2: I'm like threatened to threaten to move in, threaten to transition, Hi,
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Speaker 2: I'm like okay. So I walked in and I said, look,
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Speaker 2: either you guys figure something out, or we're going to
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Speaker 2: Vanderbilt because that's where I'm from and from the South,
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Speaker 2: so going to Vandy is what I know.
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Speaker 3: We're going to Vanderbilt and we're gonna fucking get him fixed.
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Speaker 2: Very next day and walks a GI doctor with another
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Speaker 2: GI doctor on a computer. If you're from America and
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Speaker 2: you've ever seen Zoe went on one with you, Peter
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Speaker 2: got the computer teachers the exact same thing. But UH
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Speaker 2: pushed this guy in. I've never met him before in
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Speaker 2: my life. I've not met him before since. And he goes,
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Speaker 2: I'm gonna say something's super scary to you, but I
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Speaker 2: need you to trust me. Do you want to keep
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Speaker 2: him here until we get the central line removed? Or
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Speaker 2: do you want a central line place permanently? And do
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Speaker 2: you want to take him home? Knowing to risk that carries.
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Speaker 2: Then I went over the risk, and I sat there
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Speaker 2: for a minute, and I was raised in a metically
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Speaker 2: complex household, So like the medical jargon in now of
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Speaker 2: the hospital, that's whatever to me. But a central line
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Speaker 2: that can be deadly but also starving to death is deadly.
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Speaker 3: And I didn't want him.
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Speaker 2: Growing up in these hospital walls. So I said, fuck it,
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Speaker 2: we've all let's do it, and we did. We brought
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Speaker 2: him home after seven weeks. He got his central line
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Speaker 2: placed April first. They taught us everything that whole week
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Speaker 2: to take care of him, and he came home April eighth,
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Speaker 2: and then he spent four hundred and twelve days with
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Speaker 2: that central line. After that, he admitted. In the past
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Speaker 2: twelve months, he's admitted twenty five times.
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Speaker 3: Between just g.
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Speaker 2: I bugs, respiratory viruses, minute fevers to make sure that
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Speaker 2: it wasn't like a central line infection. He did have
10:16
Speaker 2: one actual central line infection in October that literally came
10:20
Speaker 2: out of nowhere, and they were so excited and proud
10:23
Speaker 2: of me for catching as fast as we did. I
10:25
Speaker 2: think it was my first viral video actually because I
10:27
Speaker 2: happened to be reporting.
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Speaker 3: For a correctal surgery video and it just so happened
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Speaker 3: that before that.
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Speaker 2: While I was recording, I found his fever and I
10:35
Speaker 2: was like, oh fuck, and we rushed to the hospital.
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Speaker 2: And that's what my first time I ever went viral.
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Speaker 2: That was crazy. That was never my intention. All I
10:45
Speaker 2: ever wanted to do was to talk about Hirst Sprungs
10:48
Speaker 2: and shortcut syndrome and intestinal failure and.
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Speaker 3: What all it takes. But that was so cool, and
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Speaker 3: he is so cool.
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Speaker 2: I wish he was awake because you could see him.
11:00
Speaker 2: I hope he wakes up before we're done, because he's
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Speaker 2: gotten so big.
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Speaker 3: He has spot so hard. He went from when they
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Speaker 3: discharged us from the hospital.
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Speaker 2: In the beginning, he was eating eight ounces a day
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Speaker 2: and before his pull through connection, I got him to
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Speaker 2: eating twenty four ounces.
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Speaker 3: From eight, like safely and absorbing it.
11:27
Speaker 2: And you know some people are like, well the short
11:31
Speaker 2: What confused me to is like, you know, your short
11:34
Speaker 2: bow is what's supposed to absorb all the nutrients. And
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Speaker 2: Franklin had all of his short bowl, he should have
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Speaker 2: been able to absorb his nutrients, but for some reason
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Speaker 2: he had a dismotility issue that he just couldn't.
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Speaker 3: He just couldn't.
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Speaker 2: The second we got that colon back in place, though,
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Speaker 2: and it's only like forty percent that he.
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Speaker 3: Has left, it took off like crazy. He started being
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Speaker 3: able to gain weight, he started being able to eat more.
12:01
Speaker 2: I will say, and I can say this here, I
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Speaker 2: feel like, fuck dilations and irrigations, just just fuck them.
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Speaker 3: I still have to do irrigations every day, twice a day.
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Speaker 3: And I'm blessed enough that I'm part of the paid
12:14
Speaker 3: parent caregiver program here in Colorado, but there's not enough
12:19
Speaker 3: money in the world it makes it worth it.
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Speaker 2: I've had way too many, like way too much on
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Speaker 2: my therapy sessions that I've had to like spend time
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Speaker 2: actually talking about that and like working through that because
12:32
Speaker 2: that was the hardest thing to have to do.
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Speaker 3: And I'm so glad dilations are over for us, Irrigations
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Speaker 3: for like they'll never be over.
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Speaker 1: Yeah, it's it's it's a tough one. It is. I
12:44
Speaker 1: mean from parents, a lot of parents that I've spoken
12:48
Speaker 1: to who have been through that process, it is. Yeah,
12:55
Speaker 1: there's no way around it. It's it's not good. It's
12:58
Speaker 1: not good at all.
13:00
Speaker 3: It's it's it's so fun.
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Speaker 1: Yeah, yeah, it's it's not it's not great, but it's Yeah,
13:08
Speaker 1: it's It's why I really wanted to chat to you
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Speaker 1: because it's it's a it's a really interesting story. It
13:15
Speaker 1: is Frankie's story, and it wouldn't it's not necessarily. I mean,
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Speaker 1: if there is a textbook Hirstprungs, which I'm not really
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Speaker 1: sure that there is, it's not really kind of a textbook.
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Speaker 1: Was diagnosed after forty eight hours, et cetera, and then
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Speaker 1: you know, carried on from there. But when when was
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Speaker 1: Frankie diagnosed?
13:37
Speaker 3: Day four of life?
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Speaker 2: Officially we knew it was Hirstprungs more than likely from
13:42
Speaker 2: the beginning.
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Speaker 3: But day four we had a rectal biopsy.
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Speaker 2: Done and they placed his astomy, and then they took
13:49
Speaker 2: him back in on day five and did another rector
13:52
Speaker 2: biopsy to find out exactly where his transition zone was.
13:55
Speaker 2: Because he was so little, they couldn't do it all
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Speaker 2: in one go. He has had fourteen surgeries.
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Speaker 1: It's a lot. It's a lot in such a short
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Speaker 1: space of time. I mean, I again, Hurts Springs is
14:11
Speaker 1: an odd one where you will have people who will
14:15
Speaker 1: have maybe a couple and that'll be that. But then
14:22
Speaker 1: I've known people who've had upwards of one hundred and forty,
14:26
Speaker 1: you know, and you know that's on the extreme end
14:30
Speaker 1: of the scale, and then there's sort of everything in between.
14:34
Speaker 1: And it doesn't really because you said it around forty
14:39
Speaker 1: percent of the intestine left, so talking long segment.
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Speaker 3: There, yep.
14:46
Speaker 1: So it's it's yeah, so obviously that's going to have
14:49
Speaker 1: more complications the more that's affected potentially. But yeah, fourteen surgeries,
14:55
Speaker 1: that is a that is a lot. And how's he
14:58
Speaker 1: sort of coped with all of those? You know?
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Speaker 2: Honestly, the first couple, from what I can remember, he
15:06
Speaker 2: acted like he had just had surgery, and you would expect,
15:09
Speaker 2: but the past few I'm telling you, I don't know
15:13
Speaker 2: how he does it. He pops up like he hadn't
15:16
Speaker 2: just had anything done. When he had his nine and
15:19
Speaker 2: a half hour pull through and still had an epidol in.
15:23
Speaker 3: He was standing and walking that night in the ICU,
15:27
Speaker 3: like had to get a sitter. Like he powers through
15:33
Speaker 3: in a way that I have never seen in my life.
15:36
Speaker 3: Like he is so strong it is crazy. He has
15:40
Speaker 3: an insane pain tolerance.
15:45
Speaker 1: That's amazing. But then he kind of and I don't
15:51
Speaker 1: know whether it's the same with everybody with Hirshprungs, but
15:53
Speaker 1: you do, you do see that a lot with people
15:56
Speaker 1: with Hirsprungs is that they do have a huge pain
16:00
Speaker 1: tolerance threshold. And I don't know whether it's because of
16:04
Speaker 1: a lot of surgeries happen when when we're younger, potentially,
16:10
Speaker 1: so you do kind of have you do sort of
16:13
Speaker 1: have that that pain torrant because you know, we can't
16:18
Speaker 1: get a lot of surgeries happen before we can walk,
16:22
Speaker 1: before we can talk, so we can't necessarily express how
16:26
Speaker 1: we're feeling at that age. So I don't know whether
16:33
Speaker 1: we just kind of suck it up and you know,
16:37
Speaker 1: we just sort of have to just grin and bear
16:41
Speaker 1: it because we can't really talk, which obviously brings potentially
16:47
Speaker 1: its own problems down the line. Maybe. But yeah, I'm
16:51
Speaker 1: I'm not surprised when I hear people say that their
16:57
Speaker 1: children have really high pain tolerance thresholds, because it seems
17:00
Speaker 1: to be that's kind of the way Hirshprungs is. I guess.
17:06
Speaker 3: It's a crazy thing to think about.
17:07
Speaker 2: It's still so sad, like it's very but there's a
17:10
Speaker 2: part of it that is very He's cool. He's cool,
17:14
Speaker 2: and he's so strong and it's so cool, and it's
17:16
Speaker 2: also like so damn sad, like these are little guys,
17:21
Speaker 2: These are just little babies that are having to go
17:23
Speaker 2: through this and it's the freaking worst.
17:28
Speaker 1: Yeah, yeah, yeah, it is, it is, and it's it is,
17:34
Speaker 1: but it's also unfortunately the sort of yeah, the kind
17:40
Speaker 1: of the way Hirshprungs is. And I'm always hesitant when
17:44
Speaker 1: talking about Hirshbruks to talk in definites because people tell
17:51
Speaker 1: me a lot of definites with herchem as well. This happens,
17:53
Speaker 1: and that will happen and this will happen, and it's
17:56
Speaker 1: just not it's not always the case, and everybody's different
17:58
Speaker 1: with hirshprungs, which then is also an issue because we
18:04
Speaker 1: kind of want sometimes we want to know what's going
18:08
Speaker 1: to happen in the future, and it's just sometimes it
18:15
Speaker 1: is a wait and see, And I guess that's also
18:17
Speaker 1: a really frustrating part.
18:20
Speaker 3: It's very hard.
18:21
Speaker 2: I mean, and I even remember, like sometimes, like I
18:24
Speaker 2: found it difficult in the beginning when like other hirshbrunks
18:28
Speaker 2: kids or like adults would be like, Oh, he's gonna
18:32
Speaker 2: be fine, He's gonna be fine, and I'm just like, guys,
18:36
Speaker 2: he's starving to death.
18:37
Speaker 3: He is starving to death. He is not fine. It
18:42
Speaker 3: didn't feel like he was gonna be find And looking back,
18:45
Speaker 3: I was very ridiculous about it.
18:47
Speaker 1: But like.
18:49
Speaker 2: It is when everything's so different, like how do you
18:53
Speaker 2: even provide support to other hirshbruns people, because like every
18:56
Speaker 2: journey looks so insanely different, Like we've done in so
19:01
Speaker 2: much genetic testing on both of our boys to try
19:03
Speaker 2: to figure out if it's a genetic thing and there
19:05
Speaker 2: is nothing there, and then you've got someone else who
19:07
Speaker 2: has hursprungs and there's this definitely genetic.
19:09
Speaker 3: And like that's an entirely different story too. What that
19:13
Speaker 3: looks like?
19:15
Speaker 1: Yeah, I mean this was this was brought up quite
19:19
Speaker 1: a lot of the Hirshprung's conference that I went to
19:22
Speaker 1: a couple of weeks ago. As we sit here and
19:25
Speaker 1: record this, and obviously there again they can't talk in
19:31
Speaker 1: absolute definites of but they know a bit more than
19:36
Speaker 1: than to find you and everybody else new and they
19:39
Speaker 1: know a lot more than me. And they were talking
19:43
Speaker 1: about genetics and about how I think the facts they
19:50
Speaker 1: gave was if you have a parent with hirsprungs and
19:54
Speaker 1: then you have a child, twenty percent and then sibling
19:58
Speaker 1: is four percent. Shots in terms of genetics. But again
20:04
Speaker 1: that's roughly. I don't think that's exactly you know the way,
20:11
Speaker 1: so it it is. But what what did you find
20:16
Speaker 1: from genetic testing?
20:19
Speaker 3: Literally nothing.
20:20
Speaker 2: It drove us all insane because both my boys have
20:24
Speaker 2: a swallowing difficulty.
20:26
Speaker 3: Both my boys have a slight breathing problem.
20:29
Speaker 2: Both my boys, one for sure has her sprungs, the
20:32
Speaker 2: other has what might be short segment, but no one
20:36
Speaker 2: will work up and we're just kind of waiting and seeing.
20:42
Speaker 3: So it's just it's a fun time. It's a fun
20:48
Speaker 3: time and there's nothing off. The next gay back we've had.
20:50
Speaker 2: We've done genetic panels with Ditt Denver with and shoots
20:53
Speaker 2: and like they're research hospitals.
20:54
Speaker 3: They're great. If you've done genetic panelsled our pediatrician, nothing
20:58
Speaker 3: comes back. And I just say, science hasn't cut up yet.
21:01
Speaker 3: We don't know.
21:03
Speaker 2: We're not saying that the boys don't have a genetic moation,
21:05
Speaker 2: but we just don't know yet.
21:09
Speaker 1: Yeah, yeah, and and but there's so many people that
21:17
Speaker 1: talk to me and they say that, oh, it's genetic.
21:20
Speaker 1: So if you have hersprungs, then you're going to have
21:22
Speaker 1: a child with hirshprungs. That's not necessarily the case because
21:27
Speaker 1: I've met people with hirsprungs who then have children who
21:30
Speaker 1: then don't their children don't have hirsprungs, and it's so
21:35
Speaker 1: that's not necessarily the case. But it's it's a tough
21:39
Speaker 1: one because trying to find out a definitive answer just
21:45
Speaker 1: doesn't seem to be. Like you say, the science isn't
21:48
Speaker 1: quite there yet. So trying to find out yes, no,
21:53
Speaker 1: you know, that there's a lot of people that I
21:55
Speaker 1: meet where it is sporadic, it is, I mean, and
21:58
Speaker 1: I'm one of those people as well, where you know,
22:01
Speaker 1: none of my brothers have heirsprungs, but I do, you know,
22:06
Speaker 1: there's no heirsprungs in my wider family at all. But
22:10
Speaker 1: then there's a lot of people like me where where
22:13
Speaker 1: there's just one person and you you know, you were
22:16
Speaker 1: the the unlucky one, I guess, and that just seems
22:19
Speaker 1: to be that seems to be the case, which is
22:24
Speaker 1: which is not very helpful.
22:25
Speaker 3: Really, No, it's not. It's a very it's a very
22:30
Speaker 3: frustrating disease sometimes.
22:34
Speaker 1: Yeah, yeah, yeah, it's absolutely because I think, you know,
22:38
Speaker 1: just all of us is human beings. We just want answers.
22:41
Speaker 1: You know, we just kind of want well, Okay, this happened,
22:44
Speaker 1: and this happened, therefore this happened, and I just I
22:48
Speaker 1: don't think heirsprungs is yeah, I guess, like a lot
22:52
Speaker 1: of conditions and I don't I don't think we're alone
22:54
Speaker 1: in this at all, but ah, you know, we just
23:01
Speaker 1: kind of want we want answers, and we want to know,
23:05
Speaker 1: you know, why this happened and why that happened, but
23:07
Speaker 1: it's just it's just not there yet. But I think
23:11
Speaker 1: one of the things that I have seen you do
23:14
Speaker 1: is it was one of the first place I found
23:17
Speaker 1: you was via TikTok and doing like lots of like
23:23
Speaker 1: you said, with the viral TikTok as well, that seemed
23:27
Speaker 1: quite scary. It must have been quite scary at the time. Ah, yes, yeah,
23:34
Speaker 1: And you do post a lot of really good info
23:39
Speaker 1: which is which is fantastic, and it's all and it's
23:42
Speaker 1: all as you're going through it as well, so it's
23:45
Speaker 1: all in real time. So like, huge kudos to you
23:48
Speaker 1: for that, because again that must be whilst you're going
23:53
Speaker 1: through it to them post and must be so valuable
23:57
Speaker 1: for a lot of parents have have you found that
24:00
Speaker 1: as well of other people sort of reached out to you.
24:04
Speaker 2: That's the craziest part and the part that makes me
24:06
Speaker 2: the happiest is that it has. It's found me other
24:09
Speaker 2: Hirsch Frunk's families, It's found me other OSK to Me families,
24:12
Speaker 2: it's found me other Shortgut families. It has brought me
24:17
Speaker 2: so much closer and so much community.
24:20
Speaker 3: And I've gotten so many messages.
24:21
Speaker 2: From other families being like your videos, like you're so
24:25
Speaker 2: real your videos, like you bring light to my life,
24:29
Speaker 2: Like you help me so much, Like I couldn't do
24:31
Speaker 2: this about you.
24:33
Speaker 3: And I meet. Those means so much to me because
24:36
Speaker 3: like I I am just a shy girl. I am
24:38
Speaker 3: very awkward. I don't go out much. I don't put.
24:43
Speaker 2: Before Franklin, I never really posted like but I felt
24:48
Speaker 2: a calling to like bring awareness and not feel so alone,
24:52
Speaker 2: and like that's what it started as.
24:53
Speaker 3: Truly, it started.
24:54
Speaker 2: As like a diary and a way to speak out
24:58
Speaker 2: in a way to not feel so alone, and it
25:01
Speaker 2: became advocacy.
25:03
Speaker 3: I think that's so cool.
25:04
Speaker 2: I think something that I built out of complete brokenness,
25:08
Speaker 2: because if you scroll way back, you'll see that, like
25:10
Speaker 2: it was truly me mourning the beginning of what I
25:14
Speaker 2: thought Frankie's life was supposed to look like. To build
25:20
Speaker 2: that into something so cool and to gain over seven
25:22
Speaker 2: thousand followers from like two hundred is insane to me.
25:28
Speaker 2: And I know to some people that's nothing, but to me,
25:30
Speaker 2: that's insane.
25:33
Speaker 3: It's a lot.
25:34
Speaker 1: Yeah. Yeah, if you put you know, found a room
25:38
Speaker 1: that could fit seven thousand people and you'd be surprised
25:41
Speaker 1: about how big that room is Yeah. I think it's yeah.
25:47
Speaker 1: I think I think it really is. And I think
25:49
Speaker 1: we were along the same wavelength there just kind of
25:53
Speaker 1: you know, and like a lot of people where Hirshprung's
25:58
Speaker 1: is or can be quite a lonely condition because it's
26:03
Speaker 1: not like you're going to meet your next door neighbor
26:04
Speaker 1: who has Hirshprungs or even anybody in the same town
26:08
Speaker 1: as you that has Hirshprungs. And to kind of think, right, well,
26:14
Speaker 1: I'm going to I'm going to do something and I'm
26:16
Speaker 1: going to you know, raise awareness or I'm going to
26:19
Speaker 1: try and find people who have this and try and
26:23
Speaker 1: show in your case, trying and show Frankie that you know,
26:27
Speaker 1: he's not alone, that other people have this condition, and
26:30
Speaker 1: it's you know, it is out there in the world,
26:35
Speaker 1: because we can feel quite alone at times. But it's Yeah,
26:40
Speaker 1: but I think what you what you do with your page,
26:42
Speaker 1: and obviously having as many followers as you do, you're
26:45
Speaker 1: obviously doing a lot of things right, and a lot
26:49
Speaker 1: of people who are very engaged with your content as well,
26:56
Speaker 1: because it is it is, it is real life, and
27:00
Speaker 1: I think a lot of people do really like that
27:04
Speaker 1: kind of stuff. Thank you, But I think I think,
27:09
Speaker 1: I think I think showing the sort of you know,
27:14
Speaker 1: real aspect of it is is is valuable because again
27:18
Speaker 1: it's it's one of those things I kind of, like
27:21
Speaker 1: I said before, where people are going through maybe not
27:25
Speaker 1: exactly the same as you, but maybe a similar, similar
27:28
Speaker 1: sort of path, and they want to be able to
27:31
Speaker 1: see that somebody else is going through that as well,
27:35
Speaker 1: and that some somebody is kind of So again it's
27:39
Speaker 1: it's not fitting alone on that journey, which I think
27:42
Speaker 1: your your content really provides. But yeah, so I think
27:47
Speaker 1: that's I think what you do is fantastic, really.
27:49
Speaker 3: Do well, Thank you so much.
27:52
Speaker 1: But it's it's yeah, so it's but it's it's it's
27:55
Speaker 1: kind of the great thing about social media. There's a
27:59
Speaker 1: lot of bad things about social media, which yeah, which
28:04
Speaker 1: of course we could spend hours and hours going through,
28:06
Speaker 1: but we won't. There's a lot of bad things about
28:08
Speaker 1: social media, but a lot of great things that it
28:10
Speaker 1: does is it brings people together and it shows people that,
28:15
Speaker 1: you know, because I'd never find anyone with hirs Sprungs
28:20
Speaker 1: without Instagram, TikTok, Facebook, whatever, like, you're not going to
28:26
Speaker 1: you're not going to necessarily find anyone, but with this
28:30
Speaker 1: we can, which is which is great. I think I've
28:34
Speaker 1: also slightly sidetracked you from from Frankie's story. I think
28:38
Speaker 1: we've sort of picked up and then we then we
28:40
Speaker 1: sort of veered off, so apologies for that. I've tried
28:44
Speaker 1: to remember where we got up to, but you will
28:48
Speaker 1: know probably better than me.
28:52
Speaker 2: I think we are at to where he was getting
28:53
Speaker 2: omitted all the time, which was just basically favers.
28:58
Speaker 3: So with a central line, any fever over thirty eight
29:00
Speaker 3: celsius or thirty eight celsius were above, it's considered. And
29:03
Speaker 3: admit he did Cultures.
29:05
Speaker 2: Drawn, you know, so we did that song and dance
29:08
Speaker 2: a bunch because babies catch fevers constantly. But back in
29:14
Speaker 2: October he got a fever and it was the day
29:16
Speaker 2: We're go see the infamous doctor Delatore.
29:19
Speaker 3: That's who we did our pull through.
29:21
Speaker 2: We were very blessed, and I went to pick up
29:24
Speaker 2: Frankie out of his swing and I picked him up
29:26
Speaker 2: and he was just burning up, and I was like,
29:29
Speaker 2: oh fuck, here we go.
29:31
Speaker 3: And sure enough.
29:33
Speaker 2: I rushed him to the hospital and we're up there
29:36
Speaker 2: and they pulled the cultures and within like hours of
29:38
Speaker 2: pulling the cultures.
29:39
Speaker 3: He popped positive for a couple of viruses.
29:43
Speaker 2: And it's I don't know, maybe a week after his
29:46
Speaker 2: last revision surgery, so he's just been in the hospital.
29:51
Speaker 3: So like we know what happened.
29:57
Speaker 2: They admit him and they keep him. They keep him
29:59
Speaker 2: for a week. We're doing thankomyasin and something else. I
30:03
Speaker 2: can't remember at this point where they just run them
30:07
Speaker 2: SETH track some thank omyas in and SETH track.
30:10
Speaker 1: Soon.
30:12
Speaker 3: That was what they ran twenty four to seven for weeks.
30:16
Speaker 3: We ran that.
30:16
Speaker 2: They ran it for a week in the hospital so
30:18
Speaker 2: they got his cultures clear and then they came home.
30:20
Speaker 2: He did another week's course of antibiotic balls. So he
30:23
Speaker 2: hooked up too little balls that he had a little
30:25
Speaker 2: splitter on his central line.
30:26
Speaker 3: He drug around everywhere.
30:29
Speaker 2: And his kid is strong, because yes he would You
30:32
Speaker 2: would think that he would use his little like wheeler
30:35
Speaker 2: to move his backround.
30:36
Speaker 3: No, he would just pull it. He would just drag
30:39
Speaker 3: it antaibiotic ball KEEPPM bag and all. No shame, no fear.
30:47
Speaker 3: We're very blessed.
30:48
Speaker 2: That was his only central line infection the entire four
30:52
Speaker 2: hundred and twelve days, because that could have been way worse.
30:59
Speaker 2: It s carried me straight, that's for sure. I think
31:03
Speaker 2: I'll forever be afraid of favors. I don't think that
31:05
Speaker 2: I will ever be okay.
31:06
Speaker 3: With a fever again. He did really well though.
31:13
Speaker 2: Once he started eating, we knew he was gonna get better.
31:15
Speaker 2: It was so weird because I blew up then and
31:18
Speaker 2: I was like everyone was like, let me send you money,
31:22
Speaker 2: and I'm like, oh, well you can, but like, I
31:24
Speaker 2: don't really know how I feel about that, or like
31:26
Speaker 2: a couple of moms that lived in the Springs, which
31:28
Speaker 2: this I did take up on, I was like, let
31:30
Speaker 2: me bring you.
31:30
Speaker 3: Food and like that was so nice.
31:32
Speaker 2: And I still don't know how we got through that, honestly,
31:38
Speaker 2: because I thought, truly when he.
31:40
Speaker 3: Was infected, that I was gonna lose him, which is which.
31:44
Speaker 2: Is a common theme with me, so like I constantly
31:48
Speaker 2: think one of my children are they're gonna just die?
31:52
Speaker 2: So like to have a medically complex kid that really
31:54
Speaker 2: could was not a fun thing for me.
31:59
Speaker 3: But he survived it and he got.
32:00
Speaker 2: Through and we got to see Dela Tore in November,
32:03
Speaker 2: and once we saw Dela Tore, he was like, no,
32:04
Speaker 2: we're doing this pool through and we're gonna do it
32:06
Speaker 2: asap and we're gonna it's gonna be great, and he's
32:08
Speaker 2: gonna do fine because of Angel. Originally I was anti
32:11
Speaker 2: pool through. I was scared of what a pull through
32:14
Speaker 2: life looked like, and like, would he be continent, would
32:18
Speaker 2: he be made fun of? Would he be bullied? Would
32:22
Speaker 2: he be unhappy? What would the diaper rash be like?
32:25
Speaker 2: Would really be so horrendous? I would also like to
32:29
Speaker 2: point out right now, for anyone that needs it, sometimes
32:31
Speaker 2: the diaper rash isn't horrendous. Sometimes sometimes you're lucky and
32:38
Speaker 2: you avoid the diper rash all together.
32:40
Speaker 3: Because we have.
32:42
Speaker 2: We got that pull through down in November, and it
32:44
Speaker 2: was the best decision we ever made. It was a
32:46
Speaker 2: nine and a half hour surgery. He spent a week
32:49
Speaker 2: and a half in the hospital. Afterwards we got to
32:52
Speaker 2: come home and start everything, but he quickly had to
32:55
Speaker 2: go back because he had an obstruction. As seems to
32:58
Speaker 2: be Franklin's m he gets aliasis or prostructions really easily.
33:03
Speaker 2: So we had a Russian back up to Denver and
33:04
Speaker 2: we had to do another emergency surgery.
33:06
Speaker 3: So that was twelve and thirteen. They fixed that, luckily,
33:15
Speaker 3: That was the only time I've ever hud dilatory because
33:19
Speaker 3: he came out because I was.
33:21
Speaker 2: I was down south when they called minnow like we
33:23
Speaker 2: had Russian back and I'm like, okay, I'm rushing.
33:26
Speaker 3: Up and they got him back five minutes before I
33:29
Speaker 3: pulled in.
33:30
Speaker 2: So I didn't get to see Franky that morning before
33:32
Speaker 2: I went back, And so when Delatoria came out, I
33:35
Speaker 2: remember just breaking and sopping and it was like, I'm
33:38
Speaker 2: not a huggroup, but could I please hug you because
33:40
Speaker 2: I'm scared, and he was like, you can hug me,
33:44
Speaker 2: but there's nothing to be scared about.
33:45
Speaker 3: He's already out. He's fine because a grandpa had him.
33:49
Speaker 2: And I was like, Okay, I don't know why are
33:52
Speaker 2: we saying, Grandpa, it's a Saturday.
33:53
Speaker 3: You must be really not feeling it. But it is
33:56
Speaker 3: what it is. And this is all going on during
33:59
Speaker 3: for he's birthday week.
34:02
Speaker 2: He was getting ready to turn one, and so the
34:04
Speaker 2: whole time, I'm like, I've given up. He's not going
34:07
Speaker 2: home for his birthday. It's fine. He'll been his first
34:10
Speaker 2: birthday in the hospital. He'll have plenty more.
34:13
Speaker 3: And Ela Torre walked in on the seventeenth with two
34:16
Speaker 3: gifts and discharge papers.
34:18
Speaker 2: And it's important to note that Frankie was born on
34:20
Speaker 2: the eighteenth, meaning that we were gonna make it out
34:24
Speaker 2: just in time, and make it out we did. I'm
34:29
Speaker 2: not sure if you ever got to see it, but
34:31
Speaker 2: we got to get Frankie a nice birthday cake. It
34:33
Speaker 2: was a nice blue heartcake and it literally just said
34:36
Speaker 2: Frankie survived.
34:38
Speaker 3: Because it's exactly how I felt about the first year
34:41
Speaker 3: of his life, Like I wish you could see my
34:46
Speaker 3: planner about how busy she stays. He keeps me between
34:51
Speaker 3: these two.
34:52
Speaker 2: It's crazy, but he is so strong and so smart,
34:58
Speaker 2: like he was walking by fourteen months after fourteen surgeries.
35:03
Speaker 3: To be walking by fourteen months is insane, especially.
35:08
Speaker 2: Because they're all gut surgeries, so like those ab muscles.
35:14
Speaker 2: At least this is what pet said, because PT was
35:16
Speaker 2: working hard with him. We were very blessed that we've
35:19
Speaker 2: lived in a place that he qualifies for Medicaid, which
35:22
Speaker 2: is like our state insurance, so he gets ot PT,
35:27
Speaker 2: speech and feeding all provided every single day.
35:30
Speaker 3: Every single week.
35:33
Speaker 2: So he's been in therapy his whole life, and it's
35:35
Speaker 2: done wonders for him at first, when they put him
35:38
Speaker 2: in therapies, I was like really offended. I was like,
35:40
Speaker 2: he just got out of the nickey, like he doesn't
35:42
Speaker 2: need therapy, And then he kept readmitting.
35:44
Speaker 3: I'm like, okay, maybe he does need therapy, maybe he
35:48
Speaker 3: maybe he could benefit. Just just to weave it, I
35:54
Speaker 3: lost track again.
35:55
Speaker 1: That's so good, that's so good. I'm forever doing that.
36:00
Speaker 1: But yeah, no, it is, it is. He's very helpful,
36:07
Speaker 1: especially with our muscles, you know, because we have to
36:11
Speaker 1: because we just we just haven't got necessarily depending on Yeah,
36:15
Speaker 1: the length of hirsh sprungs. You have the muscles there,
36:20
Speaker 1: you know, we have to work a lot harder, you know,
36:24
Speaker 1: sitting up and all of that stuff. It is, it is.
36:29
Speaker 1: It is a tough one. So yeah, the therapy, physical
36:31
Speaker 1: therapy is yeah, brilliant, really really good. So I'm so
36:36
Speaker 1: glad he's doing well with that.
36:40
Speaker 3: We're at November, we're at December. Made it home for
36:42
Speaker 3: the birthday. Now where we at, Oh my.
36:46
Speaker 4: God, we're doing a good part. So we get home,
36:49
Speaker 4: we're going we're gonna read it's a good part. We're
36:51
Speaker 4: home from the hospital after this pull through, and we're
36:54
Speaker 4: going to slowly work up our way to feeds. And
36:56
Speaker 4: the best part is because I'm so type A.
36:59
Speaker 2: Yeah, I basically said, you control the feeds, you do it,
37:01
Speaker 2: you report back to us what you're doing.
37:04
Speaker 3: And I was like, cool, I got this. I know
37:06
Speaker 3: what I'm looking for.
37:08
Speaker 2: I'm looking and I'm waiting because at first they gave
37:11
Speaker 2: us a dumping max which was like thirty kilograms per
37:16
Speaker 2: whatever and like basically it was like thirty meals per
37:19
Speaker 2: kilogram that you could put out before you're dumping. Well,
37:23
Speaker 2: once we got the pull through it speaking about his
37:25
Speaker 2: a rash, so feed him till he gets a rash,
37:27
Speaker 2: except he never got.
37:28
Speaker 3: A rash, so he kept eating. He was eating. He
37:31
Speaker 3: went from eating half an ounce of food to maybe an.
37:34
Speaker 2: Ounce and a half of solids at a time. He
37:37
Speaker 2: started eating like two to three ounces.
37:40
Speaker 3: From a bottle. And you guys, come off TPN. We
37:45
Speaker 3: slowly worked our way down.
37:46
Speaker 2: We got his TPN to where it had no lipids
37:48
Speaker 2: in it, and it was down to where he was
37:50
Speaker 2: only getting one hundred and fifty calories and he was
37:52
Speaker 2: just getting fluids basically, and we took it away.
37:56
Speaker 3: We gave him a gtube. It worked. Wondering now, grants it.
38:01
Speaker 3: We have to do eight ounces a day of fluid
38:04
Speaker 3: free fluid.
38:06
Speaker 2: We have to do ten ounces of formula through it
38:08
Speaker 2: a day, and then all of his meds and then
38:11
Speaker 2: he's still on newborn feeding schedule at eighteen months.
38:15
Speaker 3: However, no central line, no CPN.
38:19
Speaker 2: I will take a newborn feeding schedule eight bottles a
38:22
Speaker 2: day in a day at a week over a central line.
38:27
Speaker 1: Yeah, definitely, definitely, I think that's no. But that's really
38:33
Speaker 1: really good to see, you know, some positives in there
38:37
Speaker 1: as well, because again it's it can be I guess
38:42
Speaker 1: one of those situations where you know, like you said,
38:44
Speaker 1: you're forever being admissed into hospital and this surgery and
38:48
Speaker 1: fourteen surgeries and anything, when you know, when is this gonna?
38:53
Speaker 1: When is this gonna sort of you know, break off
38:56
Speaker 1: a little bit? When when when are we going to
38:58
Speaker 1: have a bit of a break or a bit of
38:59
Speaker 1: some good news that.
39:01
Speaker 2: It feels right now, But it's fine. I know our
39:03
Speaker 2: day is coming because like right now.
39:05
Speaker 3: He has been omitted. Most of June kept getting gi bugs.
39:10
Speaker 3: I'm not sure if he saw that.
39:11
Speaker 2: But he literally could not quit getting gi bugs, and
39:17
Speaker 2: they kept making him dehydrated to the point that his
39:19
Speaker 2: GI even was like, hey, I'm sorry, we took the
39:21
Speaker 2: central line, and I'm like, don't be sorry, took the
39:23
Speaker 2: central line.
39:24
Speaker 3: Don't be sorry. I don't want that thing back. I don't.
39:29
Speaker 3: I'm good.
39:29
Speaker 2: I will take the dehydration as a simple emit and
39:32
Speaker 2: some fluids plus like as much Sypon was like, oh
39:35
Speaker 2: my god, another emit.
39:38
Speaker 3: I don't feel that way. I love our little hospital.
39:44
Speaker 2: Like they suck, but at the same time, like, yeah, midstuck,
39:48
Speaker 2: but like that's a great hospital.
39:50
Speaker 3: The workers are great, they all love Franky. I'm fine
39:53
Speaker 3: with it. If we have to go, we have to go.
39:55
Speaker 3: At least he's alive and he's stable. I'm pretty easy
39:58
Speaker 3: to please.
40:00
Speaker 1: Yeah, yeah, yeah. Sometimes we don't want a lot, do we.
40:06
Speaker 1: You know, we just we just kind of yeah, we
40:09
Speaker 1: want the simple stuff sometimes and sometimes that that is, Yeah,
40:13
Speaker 1: that's all we want.
40:15
Speaker 5: Sometimes, Hey, all you need is to be on the
40:18
Speaker 5: fifth floor instead of pick you Yeah, okay, And it's
40:22
Speaker 5: like I whatever, we're here, And that's pretty much how
40:28
Speaker 5: Frankie feels about it.
40:29
Speaker 3: I think maybe that's whe Frankie gets it. It's a
40:32
Speaker 3: little bit we're both just kind of this is what
40:36
Speaker 3: Frankie is.
40:37
Speaker 2: Like you asked about Frankie's pain tolerance and how he
40:39
Speaker 2: reacts to surgeries.
40:40
Speaker 3: This is essentially it.
40:41
Speaker 2: But in toddler form, it is what it is. It's
40:44
Speaker 2: gonna happen, and it's gonna be what it's gonna be.
40:47
Speaker 2: We can't do nothing about it.
40:50
Speaker 1: No, no, definitely, but it's yeah, and it is. It's
40:55
Speaker 1: one of those things sometimes you do just sort of
40:56
Speaker 1: soldier on as a as a as a as a
41:01
Speaker 1: Hirshprungs kid. You know, it is one of those things
41:04
Speaker 1: sometimes where you do kind of and again, being being
41:09
Speaker 1: as young as he is, you know, expressing that can
41:13
Speaker 1: be a tough one.
41:16
Speaker 3: Oh, it is, Oh, Iever, I have to tell you.
41:20
Speaker 3: We're doing a research study.
41:22
Speaker 2: With the Denver Hospital about behaviors and like the life
41:28
Speaker 2: of a hirsh Sprungs family and shortgut family.
41:32
Speaker 1: What does that is that sort of questionnaires and stuff.
41:35
Speaker 3: It questionnaires and stuff and basically we've already started it.
41:39
Speaker 2: And one of the biggest ones, and that's like part
41:40
Speaker 2: of what you were talking about that made me think
41:41
Speaker 2: of it is that some of these kids with these
41:44
Speaker 2: issues have like really bad headbanging issues and like they
41:49
Speaker 2: throw fits, and I thought that that was autism and Franklin,
41:53
Speaker 2: and turns out it's just the trauma. So like, yeah,
41:56
Speaker 2: he's a strong dude, but like it definitely affects him,
41:59
Speaker 2: and I definitely fully plan on putting him in therapy
42:01
Speaker 2: when he gets older and he's old enough, like he's
42:04
Speaker 2: a little young for it, but like it's happening when
42:07
Speaker 2: he's like six, because he is a headbanger. He will
42:12
Speaker 2: like literally just well off and smack his head to
42:15
Speaker 2: the ground.
42:18
Speaker 1: I'd be really interested to find out the results of
42:23
Speaker 1: that study, I don't sin to you. Yeah, I'd be
42:28
Speaker 1: very very interested, really really interested, because I think that
42:33
Speaker 1: will be, yeah, incredibly relevant.
42:36
Speaker 3: It's a hope, all the blame. It'll be so great
42:40
Speaker 3: and we've got to be a part of it.
42:43
Speaker 1: Yeah, yeah, oh absolutely, I think that would be. Yeah,
42:48
Speaker 1: I'd love to see I'd love to see the results
42:51
Speaker 1: of that, because I think that would be do you
42:53
Speaker 1: know roughly when results will be out or they're not said.
42:57
Speaker 3: They've not said, we just started it. We just started phasing.
42:59
Speaker 3: My that's good.
43:01
Speaker 1: Be a while.
43:05
Speaker 3: I get excited about things.
43:07
Speaker 1: That's good. Always good to be excited about stuff. But yeah, no,
43:11
Speaker 1: that that would be. That would be really really good,
43:14
Speaker 1: really really good to see where where that's heading. And
43:19
Speaker 1: then so you've got the the research project and then
43:25
Speaker 1: sort of just finally, and I've talked a lot about
43:29
Speaker 1: Frankie story and about how he's doing and and but
43:35
Speaker 1: where where do you kind of see his his future
43:39
Speaker 1: going now that he's sort of had a lot of
43:41
Speaker 1: surgeries and is progressing.
43:47
Speaker 2: I'm hoping, hoping that we can use one of these
43:52
Speaker 2: bowel management techniques up at Denver to get him content
43:57
Speaker 2: it eventually, when he's ready and he's a a I'm
44:01
Speaker 2: hoping that he goes on and like gets to grow
44:04
Speaker 2: up like a normal boy.
44:07
Speaker 3: I am fearful that we eventually have to return TPN
44:10
Speaker 3: and something goes wrong, But I'm hoping for the best,
44:13
Speaker 3: you know, above all else.
44:15
Speaker 1: I don't.
44:17
Speaker 3: I don't have big hopes and drooms for Frankie beyond
44:20
Speaker 3: being happy and content with who he is and knowing
44:23
Speaker 3: that he's perfect the way he is, and knowing that
44:27
Speaker 3: he's always gonna have his mom and his dad.
44:29
Speaker 2: And there's nothing wrong with you. There's not a damn
44:33
Speaker 2: thing wrong with you. I don't care that you're missing
44:35
Speaker 2: so much colon. I don't care that you've had so
44:37
Speaker 2: many surgeries and that you've got so many scars. You're
44:40
Speaker 2: perfect the way you are, and as long as he
44:44
Speaker 2: knows that, then that's all I need for his future.
44:49
Speaker 1: Yeah. Absolutely brilliantly put, really really well put. And this
44:53
Speaker 1: has been this has been really really good to Chatty.
44:57
Speaker 1: I've loved having you on and I wish either yourself,
45:01
Speaker 1: Frankie the rest of your family all the very very
45:04
Speaker 1: best for whatever comes in the future.
45:07
Speaker 3: Well, thank you, Thank you for listening.
45:14
Speaker 1: And being part of this growing community. If you have
45:17
Speaker 1: enjoyed the episode, don't forget to subscribe, leave a review,
45:20
Speaker 1: and share it with someone who might need it. You
45:23
Speaker 1: can connect with us on social media via Instagram, Facebook,
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Speaker 1: and TikTok under the name Tom's Hirshprung's Podcast. See you
45:30
Speaker 1: next week.