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Episode 133 - With Nicole Voss · Tom's Hirschsprung's Podcast

• 0:02
  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
• 0:22
  Speaker 1: tuning in. Hello, and welcome to episode one hundred and
• 0:46
  Speaker 1: thirty three of Tom's Hirshbrungs Podcast. I'm very glad to
• 0:50
  Speaker 1: be joined this afternoon by Nicole Vass and Nicole, welcome
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  Speaker 1: to the podcast.
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  Speaker 2: Hi, happy to be here, Thanks so.
• 0:57
  Speaker 1: Much for coming on. Really interested to dig into this
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  Speaker 1: story about your your youngest son who has hirshprunks And yeah,
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  Speaker 1: lots of the really interesting things that we're going to
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  Speaker 1: chat about. And I guess we'll kind of start from
• 1:17
  Speaker 1: the beginning if you will over to you.
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  Speaker 2: Well, absolutely, okay, So I have fourth Itos holt is
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  Speaker 2: who we're talking about. That's my six month old and
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  Speaker 2: he was born December seventeenth, twenty twenty five. I delivered
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  Speaker 2: him at thirty nine weeks and this was my third
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  Speaker 2: sea seption baby, so they always delivered thirty nine weeks
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  Speaker 2: with three peac sections, so nothing alarming. Everything went really
• 1:47
  Speaker 2: really well throughout the pregnancy, and actually maybeing thirty four,
• 1:53
  Speaker 2: it was my best pregnancy, which is crazy. No crazy
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  Speaker 2: blood pressure, no swelling everywhere, just pregnant and it's not
• 2:00
  Speaker 2: my legs, not my ankle's nothing crazy. So really enjoyed
• 2:05
  Speaker 2: being pregnant with him, and we went into it knowing
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  Speaker 2: he was our last too, so had him on December seventeenth.
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  Speaker 2: Everything went really really good, no concerns, had just a
• 2:20
  Speaker 2: regular you know, the diapers, making sure he had enough
• 2:22
  Speaker 2: pee diapers, making sure that he did poop, which he did,
• 2:27
  Speaker 2: and then we go over to the eighteenth and that's
• 2:31
  Speaker 2: where the story gets a little beard and a little wonky.
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  Speaker 2: We So they kept him overnight for a little bit
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  Speaker 2: so I could get some sleep because I figured they
• 2:41
  Speaker 2: would discharge us on the next day, which they usually
• 2:43
  Speaker 2: do if your repeat C section and you feel good enough,
• 2:46
  Speaker 2: they'll send your home. So we started feeding him, which
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  Speaker 2: I had already kind of gagged them a little bit
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  Speaker 2: of notice ahead of time that our third child was
• 2:57
  Speaker 2: lactose intolerant, which I thought maybe he would follow suit.
• 3:02
  Speaker 2: So I was just like, hey, you know, if he
• 3:04
  Speaker 2: starts spitting up, we probably should just go straight into
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  Speaker 2: soy milk, I just because take the lactose out of
• 3:10
  Speaker 2: it if he starts spitting up, which then I kind
• 3:13
  Speaker 2: of started eating my words. So he around I want
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  Speaker 2: to say, nine, ten thirty in the morning, started puking,
• 3:22
  Speaker 2: which there's a huge difference between kind of just spitting
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  Speaker 2: up and vomiting. And at this point he's vomiting, and
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  Speaker 2: I tell the nurse and I'm like, hey, he is
• 3:35
  Speaker 2: spitting up pretty much everything we're feeding him. So they
• 3:39
  Speaker 2: bring down soy milk from the word and they're like, okay,
• 3:43
  Speaker 2: let's try this. So we try that same thing. He
• 3:47
  Speaker 2: is continually puking. But mind you, I think they say
• 3:51
  Speaker 2: turn around time with the baby switching formula can take
• 3:55
  Speaker 2: days for the old formula to completely leave the system.
• 3:58
  Speaker 2: So they're telling me, eat, not super concerned, let's just
• 4:03
  Speaker 2: move on about our day. Okay. So two o'clockwells around,
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  Speaker 2: he's still puking. They released us from the hospital. They
• 4:13
  Speaker 2: let us go home, and at this point his stomach
• 4:17
  Speaker 2: is hard, but not to the point where I'm like
• 4:21
  Speaker 2: super concerned, but I'm still like, okay, this is his
• 4:24
  Speaker 2: stomach's hard. This is a little weird. I call back
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  Speaker 2: up to the pediatric unit that we had just left,
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  Speaker 2: and I'm like, hey, weird things happening. He's still puking
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  Speaker 2: and his stomach looks like I poured baty oil on it,
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  Speaker 2: and it looks like he has apps at the ripe
• 4:42
  Speaker 2: age of two days old. Not normal. This is weird.
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  Speaker 2: So they go. We marked on his chart that his
• 4:50
  Speaker 2: stomach was descended, and we brought this to the pediatrician,
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  Speaker 2: but they just drotted it up as soy irritation because
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  Speaker 2: I had told them that my daughter or was lactose
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  Speaker 2: and towerant, so not happy to hear that, because no
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  Speaker 2: one brought that to our attention before we left the hospital.
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  Speaker 2: So red fave number one of very many. So anyway,
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  Speaker 2: so we're going through the night. My mom had just
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  Speaker 2: left my house around two thirty from watching my other kids.
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  Speaker 2: Six o'clock. He's lethargic, he is not wanting to take
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  Speaker 2: breast milk, he is not wanting to take soy milk.
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  Speaker 2: He is completely does not want to eat at all,
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  Speaker 2: totally disinterested, still puking, Actually waking up to dry heath
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  Speaker 2: and go right back to bed. Not normal baby behavior.
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  Speaker 2: So he's up long enough, sur vomit, screamed, fall asleep,
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  Speaker 2: sow it like I want to say, six o'clock. This
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  Speaker 2: is the second time I called the pediatric unit that
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  Speaker 2: we had just left, and I go, something is wrong.
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  Speaker 2: I don't know what to do. I've had three other children,
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  Speaker 2: none of them had ever done this. Even with learning
• 6:03
  Speaker 2: about the lactose intolerance with my daughter, there was nothing
• 6:08
  Speaker 2: that was even remotely close to this. So that first
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  Speaker 2: thing I'm gonna say is a mom, always follow your gut.
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  Speaker 2: You're gonna know something's wrong with your baby. Does not
• 6:20
  Speaker 2: matter what a person in the medical field says. You
• 6:23
  Speaker 2: know your baby better than anybody specifically. You carried your
• 6:27
  Speaker 2: baby for nine months. You know what's right, you know
• 6:30
  Speaker 2: what's wrong. Always follow your gut. They then tell me
• 6:34
  Speaker 2: on the phone at the hospital that I had just called, well,
• 6:37
  Speaker 2: we can't do anything for him if it's serious, so
• 6:40
  Speaker 2: you would need to take into the university, which is
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  Speaker 2: an hour from us. So I immediately get on the
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  Speaker 2: phone with my mom. I'm like, something is wrong with him.
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  Speaker 2: I just know something's wrong. I can't tell you what's
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  Speaker 2: wrong because I've never dealt with this before, but something's
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  Speaker 2: wrong and I need you to get back over here.
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  Speaker 2: We hadn't even unpacked our bags yet. They were still
• 6:59
  Speaker 2: in the car, thank god. So we get back in
• 7:02
  Speaker 2: the car. We get to the university around eleven thirty
• 7:06
  Speaker 2: at night, and by the time we get there, our
• 7:09
  Speaker 2: son is keuking up vial which looks like pond water,
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  Speaker 2: literally just gobs of it. I mean he is puking
• 7:18
  Speaker 2: up right green, mossy looking vile. We get in the doors,
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  Speaker 2: thank god, for you know, how fast did the hospital
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  Speaker 2: did work? Because we got through those doors. They're immediately
• 7:32
  Speaker 2: putting ivs in him. They immediately put a sump pump
• 7:36
  Speaker 2: down his throat to start sucking up the air and
• 7:39
  Speaker 2: getting the green stuff out because they don't know why
• 7:41
  Speaker 2: it's there, so they want to get it out. For
• 7:44
  Speaker 2: whatever reason. They're the number one. So the first things
• 7:48
  Speaker 2: they start with is obviously X ray CT scan with
• 7:53
  Speaker 2: and die also ultrasound, which anybody knows that the X
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  Speaker 2: ray they had noted obviously substantial amounts of gas is
• 8:04
  Speaker 2: what they're seeing. They can't see anything else because it's
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  Speaker 2: just gas blocking pretty much the whole image just gas.
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  Speaker 2: So then they're like, let's do a CT scan with die,
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  Speaker 2: which we had to continually check overnight. They were in
• 8:18
  Speaker 2: and out, I believe every two hours, checking that CT
• 8:22
  Speaker 2: to see where the dye is ending up moving in
• 8:25
  Speaker 2: his colon at that point your stomach rather more, because
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  Speaker 2: we didn't know where it was stopping at. So they
• 8:34
  Speaker 2: come back in at I want to say, it's like
• 8:37
  Speaker 2: eight o'clock in the morning and they're like, hey, we
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  Speaker 2: did the last check for the DIE and it is
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  Speaker 2: stopped halfway through his stomach. We are worried about blockage
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  Speaker 2: at this point. Okay, so we are finally admitted. We
• 8:54
  Speaker 2: had to wait for a room in the nick. You
• 8:56
  Speaker 2: due to how many days old he was, had to
• 9:00
  Speaker 2: make sure that they had a spot for us before
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  Speaker 2: they could even fully admit us. So they get us
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  Speaker 2: in a room and this is nine thirty in the
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  Speaker 2: morning when they finally get us admitted in inner room.
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  Speaker 2: So actually, as we're leading the emergency room department, there's
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  Speaker 2: a team of surgical doctors following us to our room,
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  Speaker 2: and I kind of had a weird feeling that I'm like, oh,
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  Speaker 2: this isn't feeling just to run in by chance, they
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  Speaker 2: follow us up the elevator. They gave us enough time
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  Speaker 2: to put our bags down, and they're like, your baby
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  Speaker 2: needs surgery, like immediately, we need to figure out why
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  Speaker 2: he is not getting the die through his stomach and
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  Speaker 2: why there's a blockage. And it's funny. It's not funny,
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  Speaker 2: but trauma does a weird thing to you. So there's
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  Speaker 2: certain parts of the story. I think his heart kept
• 9:51
  Speaker 2: doing weird things too, like his heart rate was elevated
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  Speaker 2: that this as well, because I remember the heart monitors
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  Speaker 2: going off. It was only when he was getting really
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  Speaker 2: really upset, but that's when he had all the gas
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  Speaker 2: on his stomach. So that was another thing that we
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  Speaker 2: were watching at that point, the super stressful situation. So
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  Speaker 2: we get up to the room, they go down and
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  Speaker 2: I think they talk to the radiologists to for sure
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  Speaker 2: confirm they're doing surgery. They said, we'll be back in
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  Speaker 2: an hour to tell you if we are or aren't,
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  Speaker 2: but we're almost positive we have to do this. We're like, okay,
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  Speaker 2: So again, it's all the paperwork, it's all the worry.
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  Speaker 2: You're two days on, two days postpartum of C section.
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  Speaker 2: We are completely overwhelmed. Because we don't know what's wrong
• 10:39
  Speaker 2: with him. But so then we get they come back up.
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  Speaker 2: So this is around ten thirty eleven o'clock in the morning,
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  Speaker 2: and they're like, yes, we were gonna do surgery. Now
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  Speaker 2: we're gonna take him down with us. The exploratory surgery
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  Speaker 2: will probably take around two hours, give or take. Oh
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  Speaker 2: the time, we're calling our family, we're telling them all
• 11:02
  Speaker 2: the things that are happening. We really don't have answers.
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  Speaker 2: So then two hours goes by and I'm just gonna
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  Speaker 2: refer to him as doctor G. Doctor G gives us
• 11:14
  Speaker 2: a buzz on our little pager thing letting us know
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  Speaker 2: they're coming back up to the room. So we go
• 11:19
  Speaker 2: and we meet him in the room. He has a
• 11:22
  Speaker 2: thick smile on his face, and he said, we're just
• 11:24
  Speaker 2: gonna call it sticky poop. It looks like it's just
• 11:27
  Speaker 2: sticky poop. There's a whole bunch of the marconium that
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  Speaker 2: bunched up and it was stuck there. But he did
• 11:33
  Speaker 2: pass bow before we even took him to the surgery,
• 11:36
  Speaker 2: so all great things. He just had a lot of
• 11:39
  Speaker 2: backup but no blockage. All great news. So we're thinking, yay,
• 11:44
  Speaker 2: it's over. It's over. But it did not turn out
• 11:50
  Speaker 2: that way. So they immediately let us start feeding him
• 11:54
  Speaker 2: after surgery because he was hungry at that point, so
• 11:58
  Speaker 2: we said him and not even probably two hours in,
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  Speaker 2: he starts throwing up the bio again. So not good news,
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  Speaker 2: no more poop. Nothing else has happened in that aspect.
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  Speaker 2: So we're now on December nineteenth and they are saying, Okay, well,
• 12:25
  Speaker 2: now we need to start looking at different things here
• 12:30
  Speaker 2: because this is not just sticky poop. But I do
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  Speaker 2: want to note in this, and this was a big
• 12:35
  Speaker 2: aha moment for me, is what they don't tell you
• 12:40
  Speaker 2: is after exploratory surgery, they are giving your baby opioates
• 12:46
  Speaker 2: to make your baby comfortable. But if anybody knows anything
• 12:51
  Speaker 2: about opieoits, it also causes constipation. So the sad part
• 12:59
  Speaker 2: about this this is is you're fighting constipation that the
• 13:03
  Speaker 2: drug also causes constipation. So immediately, and again I didn't
• 13:10
  Speaker 2: think of this until after the fact of the times
• 13:13
  Speaker 2: that we had put him under and what that looked like.
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  Speaker 2: And I wish it would have stuck in my brain sooner,
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  Speaker 2: but that is the one thing that has forever stuck
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  Speaker 2: ingrained in my brain, I guess I would say, is
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  Speaker 2: when they had allowed us to feed him right after
• 13:30
  Speaker 2: getting him a constipation drug. So again, this is December
• 13:36
  Speaker 2: nineteenth and they had given him I want to say
• 13:41
  Speaker 2: it was I'm trying to think of what it was.
• 13:48
  Speaker 2: I'll think of it. I'll think of it later, but
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  Speaker 2: it is an opioid nonetheless. So with that being said,
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  Speaker 2: moving on, it's the nineteenth and they go, you know,
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  Speaker 2: there's other things we need to look at at this
• 14:00
  Speaker 2: point based off of his symptoms and what's going on.
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  Speaker 2: First thing being cistic fibrosis, which is done in the paneling,
• 14:09
  Speaker 2: which I had already done at the other hospital. So
• 14:12
  Speaker 2: they were awaiting that paneling that it was going into
• 14:15
  Speaker 2: a weekend, so probably not likely that we would get
• 14:18
  Speaker 2: the paneling back to know about that until probably a
• 14:21
  Speaker 2: couple of days, so we had to wait on that.
• 14:25
  Speaker 2: I want to say it took about four to five
• 14:27
  Speaker 2: days to get the results of that that it was
• 14:29
  Speaker 2: not cystic fibrosis. So then we moved into the other thing,
• 14:34
  Speaker 2: of which they wanted to push more cistic fibrosis testing,
• 14:39
  Speaker 2: and he told them no, based on everything that had
• 14:42
  Speaker 2: already been through, we were like, no, we're stopping there.
• 14:44
  Speaker 2: We want to know about the other thing, which was
• 14:46
  Speaker 2: the Hirschbrungs disease. So the first thing that comes in
• 14:51
  Speaker 2: the step with the Hirschbrungs disease was the first thing
• 14:56
  Speaker 2: of the biopsy, so was the first thing that was
• 15:01
  Speaker 2: performed to see about that, which was done bedside. They
• 15:05
  Speaker 2: come in. We actually got to watch the whole thing
• 15:08
  Speaker 2: take place. But that side, obviously they go through the rectum.
• 15:12
  Speaker 2: They say in the area that they trust at the
• 15:15
  Speaker 2: very end of the rectum, there is actually no feeling there.
• 15:20
  Speaker 2: So he was actually happy when they were doing it
• 15:22
  Speaker 2: because he was passing war poop because so he was
• 15:26
  Speaker 2: kind of happy that that was happening. There was no
• 15:28
  Speaker 2: signs of it actually being painful. So I do believe
• 15:32
  Speaker 2: what they say about that there's no nerve endings right
• 15:34
  Speaker 2: where they do the first biopsies. So we did that
• 15:38
  Speaker 2: first biopsy. They had told us that with them having
• 15:40
  Speaker 2: it in their lab, it will only take a couple
• 15:43
  Speaker 2: of days. Also not accurate. We had to wait I
• 15:47
  Speaker 2: think it was two weeks to get those results back. Again,
• 15:51
  Speaker 2: this is I'm going to give them a little bit
• 15:54
  Speaker 2: of benefit of the doubt, simply because this was around Christmas.
• 15:57
  Speaker 2: It was a weekend, a lot of things happening, and
• 16:00
  Speaker 2: so maybe those results come back at different places quicker,
• 16:03
  Speaker 2: but in our circumstances it did not. So that being said,
• 16:08
  Speaker 2: so at the nineteenth they decided they were not going
• 16:10
  Speaker 2: to feed Holts anymore. We were not going to feed him.
• 16:13
  Speaker 2: So what that looked like was pure chaos, not good,
• 16:19
  Speaker 2: very painful for everybody involved, mainly him but also his
• 16:23
  Speaker 2: parents because that was very painful for a baby to
• 16:26
  Speaker 2: not be able to eat. Now, what I will say
• 16:28
  Speaker 2: is they give them like a sugar drip, which I
• 16:31
  Speaker 2: think is kind of like a trick on the mind,
• 16:33
  Speaker 2: but also keeping their blood sugar where it needs to
• 16:36
  Speaker 2: so basically they don't drop in their blood sugar is
• 16:40
  Speaker 2: what it was explained to me. It's a more dense
• 16:43
  Speaker 2: I'm not going to say it's like a fin sugar water.
• 16:46
  Speaker 2: It had to be through an IV, which they eventually
• 16:49
  Speaker 2: did move his IV, which that's the thing that starts
• 16:52
  Speaker 2: with babies. Their IV's almost ninety five percent of the
• 16:54
  Speaker 2: time blowout, so they end up having to put one
• 16:58
  Speaker 2: of those quorts, like either in their head or some
• 17:01
  Speaker 2: other place to keep it. So it's a consistent spot
• 17:05
  Speaker 2: that doesn't blow out. So they ended up doing that
• 17:09
  Speaker 2: with Holt. He went four days without eating and they
• 17:16
  Speaker 2: on the third day decided that they were going to
• 17:18
  Speaker 2: give him a sham feeding, which I don't know if
• 17:21
  Speaker 2: that's something you guys are familiar with in the UK.
• 17:25
  Speaker 2: They fill the stomach with food and suck it right
• 17:28
  Speaker 2: back out to almost trick the baby. It truly is
• 17:32
  Speaker 2: a sham. It's a trick, but the baby's like, you
• 17:35
  Speaker 2: guys are idiots. I know the difference. You scream the
• 17:38
  Speaker 2: whole time. So ten out of ten do not recommend
• 17:41
  Speaker 2: a shampee ever. Offer just very not not good. So
• 17:49
  Speaker 2: there was a lot of things that happened in the
• 17:51
  Speaker 2: hospital at our hospital, particularly that I was not super
• 17:56
  Speaker 2: fond of. So Holt had a stump pump pretty much
• 18:00
  Speaker 2: that whole time, so very hard to like pull the
• 18:03
  Speaker 2: baby with the sump. Also, you know he's hooked up
• 18:07
  Speaker 2: to id's that the worst part is almost sometimes the
• 18:12
  Speaker 2: bedside manner, which I'm sure anybody can stay that somewhere,
• 18:16
  Speaker 2: but there are just some people out there that are
• 18:18
  Speaker 2: not very thoughtful that this is a really trying time
• 18:21
  Speaker 2: for a parent, and it's really hard, and I think
• 18:25
  Speaker 2: they're almost oblivious to it because they see it so much.
• 18:28
  Speaker 2: I won't say they see hirsh rung so much, but
• 18:30
  Speaker 2: they see a lot of babies and the nick you
• 18:32
  Speaker 2: and you know. But we were there. Surprisingly there was
• 18:36
  Speaker 2: not a lot of parents with their babies and the
• 18:39
  Speaker 2: nikki when we were there, which to me was shocking that.
• 18:41
  Speaker 2: I understand, life happens, not everybody can be there, but
• 18:45
  Speaker 2: for us, there was no chance we were leading, we
• 18:48
  Speaker 2: were advocating, we were not leading. No matter what, one
• 18:51
  Speaker 2: of us was going to be there at all times
• 18:53
  Speaker 2: if not. A grandparent was there as well. So there
• 18:57
  Speaker 2: was a lot of the teams would come in and
• 19:01
  Speaker 2: they would meet every morning, so they would come in
• 19:03
  Speaker 2: into your room. This is a surgery team, pediatric team
• 19:06
  Speaker 2: as well as like I think, and nutritionists would come
• 19:10
  Speaker 2: in as well, so it's kind of like a meeting
• 19:13
  Speaker 2: of the minds every morning. But they're coming in and
• 19:15
  Speaker 2: they're discussing this in front of you about your baby.
• 19:20
  Speaker 2: So this is December, so a lot of things happened
• 19:26
  Speaker 2: in the hospital to where Holt would kind of revert back.
• 19:31
  Speaker 2: But it was December twenty fourth, the night of the
• 19:35
  Speaker 2: twenty third, I had finally just had to come apart
• 19:39
  Speaker 2: because he was on day three, well day four, at
• 19:43
  Speaker 2: that point of no eating, and I'm like, lee, I
• 19:47
  Speaker 2: told the charge nurse the night of I was like,
• 19:49
  Speaker 2: I don't care what time it is when the surgery
• 19:51
  Speaker 2: team gets here in the morning, I want them in
• 19:54
  Speaker 2: my room immediately, Like, I don't care what time it is,
• 19:57
  Speaker 2: two o'clock in the morning, come visit me, wake me up.
• 20:00
  Speaker 2: I'm probably already up, so meantime, I'm you know, the
• 20:05
  Speaker 2: good thing of him noddying is I got to score
• 20:07
  Speaker 2: a lot of breastmelt waiting for him to finally be
• 20:10
  Speaker 2: able to eat. The downfall was on the twenty fourth.
• 20:14
  Speaker 2: The morning of the twenty fourth, the SER's our team
• 20:16
  Speaker 2: had came in and they're like kind of talking and
• 20:20
  Speaker 2: it sounds like maybe they're gonna let him eat, but
• 20:24
  Speaker 2: not really clarifying that. And I'm like, here's the thing.
• 20:29
  Speaker 2: My baby's eating today, that big You don't care what
• 20:32
  Speaker 2: that looks like if I have to sneak him food illegally.
• 20:36
  Speaker 2: He's my child. I'm feeding him like he's hungry. The
• 20:40
  Speaker 2: cries he's crying are not paying cries. They're hungry. Cries like,
• 20:44
  Speaker 2: I'm a mama free like four now, and I know
• 20:47
  Speaker 2: he's hungry. We're feeding him like that's it. He's had
• 20:51
  Speaker 2: an empty stomach this whole time. He's passing, you know,
• 20:54
  Speaker 2: the wet diapers and all the things. So they're looking
• 21:02
  Speaker 2: at me like, this woman's crazy. We're gonna get her
• 21:04
  Speaker 2: out of here. And they probably felt that way and
• 21:06
  Speaker 2: I felt that way as well. If that's what it takes,
• 21:08
  Speaker 2: that's what it takes. So they come in, they finally
• 21:13
  Speaker 2: pull the trigger and say, you know what, We're gonna
• 21:15
  Speaker 2: let him eat today, and I'm like, awesome, love that.
• 21:19
  Speaker 2: So I'm like, where are we out with our results?
• 21:21
  Speaker 2: They're like, still nothing. Obviously, like I said, the CF
• 21:24
  Speaker 2: was already ruled out, so it was the Hirsch Browns
• 21:26
  Speaker 2: that we were waiting on. And again, this is Christmas Eve,
• 21:30
  Speaker 2: and I'm like, here's the other thing. If this baby
• 21:33
  Speaker 2: keeps everything down, we're leaving this hospital tomorrow, because sitting
• 21:38
  Speaker 2: here waiting on results does not do anything for anybody.
• 21:43
  Speaker 2: I have other kids at home that need me just
• 21:45
  Speaker 2: as nut as he needs me, and I just need
• 21:47
  Speaker 2: you to tell me where to from here to care
• 21:50
  Speaker 2: for him at home, because there's nothing you're doing here
• 21:54
  Speaker 2: that I can't do at home. So they had told
• 21:57
  Speaker 2: me by simply if he kept all of his food down,
• 22:01
  Speaker 2: which he did, and if he could keep like a
• 22:03
  Speaker 2: substantial amount down. I think his goal was like three ounces.
• 22:07
  Speaker 2: So many hours she surpassed with flying colors, no peaking, nothing,
• 22:14
  Speaker 2: So they say, if he he's everything down, we will
• 22:17
  Speaker 2: do that. So next morning he surpassed it flying colors.
• 22:23
  Speaker 2: So then they start teaching you how to basically is
• 22:28
  Speaker 2: it like, I forget the term of what they call it.
• 22:31
  Speaker 2: It's basically, you can give him an enema of the rectum.
• 22:34
  Speaker 2: You're cleaning him out. So I'm doing that, so they
• 22:39
  Speaker 2: tell me to do that or we're actually I said
• 22:43
  Speaker 2: that wrong. I had to get him suppositories dayly, the
• 22:46
  Speaker 2: one time a day suppositories. If he did not on
• 22:51
  Speaker 2: the suppositories, that is when they had told me that
• 22:54
  Speaker 2: I would need to clean him out. The other option
• 22:58
  Speaker 2: if the suppository did not work, but the suppositories did work.
• 23:01
  Speaker 2: But that's a whole different keap giving a brand new
• 23:05
  Speaker 2: baby suppositories because they do not make infant size suppository.
• 23:10
  Speaker 2: I mean, you're talking toddlers suppositories, is what you're happing
• 23:14
  Speaker 2: to give your baby, which is very hard. So they
• 23:19
  Speaker 2: release us on the twenty fifth. I believe we got
• 23:21
  Speaker 2: home around two or three o'clock. So we had been
• 23:25
  Speaker 2: there from the eighteenth until the twenty fifth, So that
• 23:29
  Speaker 2: was our first stint of it in the Nikkio. So
• 23:34
  Speaker 2: I think our follow up visit was two weeks after
• 23:38
  Speaker 2: we were released and we go in. We still did
• 23:42
  Speaker 2: not have results from the biopsy at this point, so
• 23:47
  Speaker 2: we go into our appointment. We're talking and I'm like, okay,
• 23:51
  Speaker 2: did we get on? Like That's what I assumed the
• 23:54
  Speaker 2: follow up was for. That's when they were going to
• 23:56
  Speaker 2: give us the diagnosis of what they were seeing. And
• 24:00
  Speaker 2: they come back and they go, it was a false read.
• 24:02
  Speaker 2: We actually already sent it off to the Mayo clinic
• 24:05
  Speaker 2: as well, and it came back as inconclusive. So we're
• 24:09
  Speaker 2: gonna have to do the test again. So we do
• 24:13
  Speaker 2: it right then and there I'm already irritated, and I
• 24:16
  Speaker 2: know things happened. They were having issues with the gun
• 24:20
  Speaker 2: that they actually take the sample with. I could tell
• 24:23
  Speaker 2: they were struggling. Again. I don't know what I'm watching
• 24:27
  Speaker 2: for because this is new to me as well. This
• 24:30
  Speaker 2: is all a learning curve at this point, So we
• 24:33
  Speaker 2: do that sample, same exact procedure bedside happens right then
• 24:37
  Speaker 2: and there they're taking a sample of it. They're gonna
• 24:40
  Speaker 2: send it to their lap. Two weeks goes by again,
• 24:45
  Speaker 2: and so we're at a month now and I'm happening
• 24:47
  Speaker 2: to give him somepositories every day and that being said, Yeah,
• 24:56
  Speaker 2: so two weeks goes by again, I get a call
• 25:00
  Speaker 2: and they're like, there's there is no there is none
• 25:05
  Speaker 2: of the ganglion cells. We're not seeing any ganglion. Okay,
• 25:10
  Speaker 2: live Ganglion, I should say, so, okay, And I'm like,
• 25:15
  Speaker 2: what does that mean. They're like, that means that that
• 25:18
  Speaker 2: is another indicator that this is probably hers sprunts. So
• 25:21
  Speaker 2: let's move on to the next steps and what that
• 25:24
  Speaker 2: looks like. So the next step is they want to
• 25:28
  Speaker 2: do a ct inema of a ct die inema basically
• 25:34
  Speaker 2: to where it liked up the whole colon, to see
• 25:37
  Speaker 2: what the colon looks like, because you're not going to
• 25:39
  Speaker 2: see a perfect image without directly putting it in the
• 25:43
  Speaker 2: rectum of that whole space there. So that's the next step,
• 25:49
  Speaker 2: and then the other step is then going into and
• 25:52
  Speaker 2: taking another rectal biopsy, except this one is more invasive,
• 25:58
  Speaker 2: so they're trying to go as far up as they
• 25:59
  Speaker 2: can and without performing surgery. Basically in a nutshell, is
• 26:03
  Speaker 2: what it sounds like to me. So we go in
• 26:07
  Speaker 2: and we do the rectal ct die first. That's the
• 26:12
  Speaker 2: first step. We go in. We do that and we
• 26:14
  Speaker 2: see a picture of holds colon and so a normal
• 26:19
  Speaker 2: colon is all the same size. It's big, it's beautiful,
• 26:23
  Speaker 2: it's it's it's perfect. It goes down to the rectum.
• 26:26
  Speaker 2: It looks great. Folts is not. So it looks perfect
• 26:32
  Speaker 2: at a bird's eye view to start, but then it
• 26:36
  Speaker 2: tapers off down. I want to say, I think they
• 26:39
  Speaker 2: had said it was around five to six centimeters. Is
• 26:43
  Speaker 2: when it starts thinning out down to the bottom of
• 26:45
  Speaker 2: his rectum, is what we're seeing. So again different doctor,
• 26:51
  Speaker 2: she's saying, yes, this looks conclusive with her sprunks. So
• 26:56
  Speaker 2: I'm not going to tell you that. We're gonna move
• 26:58
  Speaker 2: on to the next step. So that's one day. So
• 27:01
  Speaker 2: it was back to back procedures. We had did that
• 27:04
  Speaker 2: that day. We go back the next day to the
• 27:07
  Speaker 2: university again, and then that is when they had done
• 27:10
  Speaker 2: his procedure, and I want to say we came home
• 27:17
  Speaker 2: the same day from the procedure of them putting him out,
• 27:21
  Speaker 2: but it was like a again like a two to
• 27:24
  Speaker 2: three hour collection of sample I think around that area.
• 27:32
  Speaker 2: And then that came back relatively much bigger than the
• 27:36
  Speaker 2: other biopsy because I think they were just looking at
• 27:39
  Speaker 2: it under the microscope for the danglion at that point
• 27:45
  Speaker 2: and kind of in a more hurry wise, I think
• 27:48
  Speaker 2: at this point. So I think we got those results
• 27:51
  Speaker 2: back within four days. So doctor G calls me and
• 27:55
  Speaker 2: he's like, hey, no gangling on again. So here's here's
• 28:00
  Speaker 2: what we're looking at. He's like, we're probably gonna have
• 28:04
  Speaker 2: to do surgery. But what the goal is, which there's
• 28:07
  Speaker 2: you can probably correct me on this because I'm, like
• 28:11
  Speaker 2: I said, I'm kind of rusty on it. So there's
• 28:13
  Speaker 2: the pull through method, and there is the small segment
• 28:20
  Speaker 2: versus the big segment. So Holtz was considered at the
• 28:24
  Speaker 2: point of time from the CT based off what we
• 28:27
  Speaker 2: were seeing was considered small segment. But again we don't
• 28:31
  Speaker 2: know that until we're in there doing surgery because they're
• 28:35
  Speaker 2: gonna test the ganglion while they're doing the surgery and
• 28:40
  Speaker 2: getting clarification. So and again I don't know how they
• 28:44
  Speaker 2: do it there, but what the textbook term they do
• 28:49
  Speaker 2: here is so they take the segment that's bad, that's
• 28:55
  Speaker 2: not testing with the ganglion, and then they add another
• 29:00
  Speaker 2: I want to say, he said ten centimeters or ten
• 29:04
  Speaker 2: millimeters above that, so Holt was a total of fifteen
• 29:08
  Speaker 2: millimeters is what they had taken out, So I think
• 29:13
  Speaker 2: it's nine to ten above the bad segment is what
• 29:18
  Speaker 2: the textbook is telling them. And then they test again
• 29:21
  Speaker 2: the gangleon around the donuts. It's called the donut is
• 29:25
  Speaker 2: what they call it. So they test more spots around
• 29:28
  Speaker 2: the doughnut where the reconnect takes place, so that comes
• 29:32
  Speaker 2: back later, but as long as they are seeing the
• 29:37
  Speaker 2: ganglon cells, that is where they're going to do the
• 29:40
  Speaker 2: donut connection at above that that area there, So that's
• 29:44
  Speaker 2: what they did. It was a total of fifteen millimeters
• 29:47
  Speaker 2: and they take that stretch it down reconnect it to
• 29:51
  Speaker 2: the anus area, which I think they leave a very
• 29:53
  Speaker 2: small portion at the anus as well where they do
• 29:56
  Speaker 2: the reconnect. So they do that. Whole surgery I want
• 30:01
  Speaker 2: to say, was around six hours. His actual surgery was
• 30:06
  Speaker 2: six hours. So we come out of that, and the
• 30:10
  Speaker 2: plan that they tell me at this point is Wholt's
• 30:14
  Speaker 2: goal is as soon as he poops, he can he
• 30:21
  Speaker 2: can eat. That's what the that's what the saying is.
• 30:24
  Speaker 2: So he poops, he can eat. But that's not necessarily true.
• 30:28
  Speaker 2: So they tell you that because they don't want somebody
• 30:32
  Speaker 2: to get upset. They stop up. But each kid, each
• 30:35
  Speaker 2: kid is their own. Holt poops on the second day
• 30:39
  Speaker 2: after having surgery. Some kid can take up to four
• 30:42
  Speaker 2: days after surgery to food that they will not give
• 30:45
  Speaker 2: them food until usually that third or four day, third
• 30:50
  Speaker 2: or fourth day after the fook takes us. So again
• 30:54
  Speaker 2: they had allowed him to finally eat. Everything went really well.
• 31:02
  Speaker 2: Unfortunately for me. While I was in the hospital with him,
• 31:05
  Speaker 2: I ended up getting influenza, so I had to call
• 31:10
  Speaker 2: somebody in to stay with my son because I'm like,
• 31:14
  Speaker 2: I'm sick. I need to go home, get away from him.
• 31:17
  Speaker 2: As much as I don't want to, I don't want
• 31:19
  Speaker 2: him getting this on top of what he's already got
• 31:23
  Speaker 2: going on. So Holt didn't phenomenal until I left the
• 31:29
  Speaker 2: hospital that night, and they stopped kind of checking his
• 31:35
  Speaker 2: diapers as much as they needed to, And what they
• 31:39
  Speaker 2: don't preparing you for is the extreme diaper rash that
• 31:43
  Speaker 2: comes with hirshprungs due to the acidic oop and the acidy. Well,
• 31:49
  Speaker 2: just the skin breakdown is unreal. It's almost like your baby.
• 31:58
  Speaker 2: I never really knew the term diper rash until I
• 32:01
  Speaker 2: dealt with hirshprungs because all the cases I dealt with
• 32:05
  Speaker 2: the flour that's nothing, that is nothing, that is a
• 32:09
  Speaker 2: drop in the bucket. What I dealt with with hirs
• 32:11
  Speaker 2: springs with my son is almost like a chemical burn
• 32:16
  Speaker 2: to the skin. It if the poop sits on the
• 32:19
  Speaker 2: skin for more than what feels like second, his skin
• 32:23
  Speaker 2: is immediately breaking down. And that is extremely overwhelming. So
• 32:29
  Speaker 2: I come home and I sleep that night, and I
• 32:32
  Speaker 2: come back to the hospital and they're calling me and
• 32:34
  Speaker 2: they're like, hey, folks, bottoms really broke down. We're going
• 32:38
  Speaker 2: to get a burn team in here. And I'm like
• 32:42
  Speaker 2: a burn team, Like what are you thinking about? So
• 32:47
  Speaker 2: I get back up to the hospital around four o'clock
• 32:50
  Speaker 2: the next eating, and I am just blown away because
• 32:56
  Speaker 2: I'm like, how did it get this way? Who the
• 33:00
  Speaker 2: ball drop? Why weren't you checking him? Like we're here
• 33:03
  Speaker 2: for her sprungs, Like this is a huge deal, Like
• 33:06
  Speaker 2: I don't know how to fix this at this point,
• 33:09
  Speaker 2: Like I'm frantic because I don't know what to do
• 33:14
  Speaker 2: to make him comfortable because he's just eating and pooping more,
• 33:18
  Speaker 2: and you know, which is great. You never wish for
• 33:21
  Speaker 2: more coop than what you do with hirsprungs. So it's
• 33:25
  Speaker 2: like a double edged sword. So I'm wanting him to poop.
• 33:28
  Speaker 2: But then it's so bad that the acidic is so
• 33:31
  Speaker 2: bad that I don't feel like I can control the
• 33:34
  Speaker 2: diaper rash. So I think we were there for about
• 33:39
  Speaker 2: five days and then we were released, and that's with
• 33:43
  Speaker 2: extreme diaper rash. Like they came in. The burn team
• 33:46
  Speaker 2: came in bless the ladies, the night of because the
• 33:51
  Speaker 2: when I got there at four o'clock that night, the
• 33:54
  Speaker 2: burn team had already left. They left like stoma powder
• 33:58
  Speaker 2: is what I was left with, and they're like you stoma,
• 34:01
  Speaker 2: which soma did help some. I will say it did
• 34:03
  Speaker 2: help some, but I was just they did this treatment
• 34:10
  Speaker 2: on his butt that is almost like this is just
• 34:14
  Speaker 2: to tell you how acidic it is, but they did
• 34:18
  Speaker 2: this treatment on his butt and they almost say it's
• 34:21
  Speaker 2: like a super glue kind of treatment. They put this
• 34:24
  Speaker 2: ointment over his butt to shield his butt from the poop.
• 34:29
  Speaker 2: It literally ate through the shield of the stuff they
• 34:34
  Speaker 2: put on his butt, so it was almost pointless, and
• 34:37
  Speaker 2: it got worse because then it started getting hung on
• 34:40
  Speaker 2: his diapers. So if anything learned from my decisions and
• 34:45
  Speaker 2: all my things, never do that treatment. I'll try to
• 34:49
  Speaker 2: rethink of what it is and I can always message
• 34:51
  Speaker 2: you what it is. I forget what it's called, but
• 34:54
  Speaker 2: it was a treatment that they had layered this on
• 34:56
  Speaker 2: his butt. Again, it almost gives him like a plastic
• 35:00
  Speaker 2: residue over his butt to save his butt from the rash.
• 35:04
  Speaker 2: But again the acidic hoop ate through it, so then
• 35:08
  Speaker 2: it's sticking to his diaper, which is making it ten
• 35:11
  Speaker 2: times worse. So finally on the fifth day, they're like,
• 35:15
  Speaker 2: are you sure you want us to send you home
• 35:17
  Speaker 2: with his butt looking like that? And I'm like, his
• 35:19
  Speaker 2: butt cut like this while we were here. There's nothing
• 35:22
  Speaker 2: you can do here for me that I can't do
• 35:25
  Speaker 2: at home. So lots of learning, lots of forums. What
• 35:30
  Speaker 2: I had read was one hundred percent cotton diapers. If
• 35:34
  Speaker 2: you're gonna use diapers, one hundred percent cotton, which is
• 35:37
  Speaker 2: very almost hard to find in store, almost impossible. So
• 35:42
  Speaker 2: Amazon is the goat for the cotton diapers. So we
• 35:47
  Speaker 2: got that on subscription rolling in one hundred percent. They're
• 35:50
  Speaker 2: called Pira diapers here in the US, so that's what
• 35:53
  Speaker 2: we used here that has worked for him. The other
• 35:57
  Speaker 2: thing that if you're in a pinch, like Milli Moon
• 35:59
  Speaker 2: diapers also hear work in the US that I've seen that,
• 36:03
  Speaker 2: you know, give him a little bit of air, but
• 36:05
  Speaker 2: like campers and stuff, no go hougez, no go. Not
• 36:09
  Speaker 2: enough breathing stuff to keep it off of him. Also
• 36:15
  Speaker 2: tried the cloth vipers. Wow, that's a lot of work.
• 36:19
  Speaker 2: Kudos to the ladies that can do that. All the time.
• 36:23
  Speaker 2: I've tried. I have tried and tried, and ever if
• 36:26
  Speaker 2: we're ever in a pinch, I do still use them
• 36:28
  Speaker 2: because they are They're awesome. If you did not have
• 36:32
  Speaker 2: other kids to tend to or you know, you could
• 36:35
  Speaker 2: throw them in your laundry. They're super accessible and they're
• 36:39
  Speaker 2: not like they used to be. So cloth vipers have
• 36:41
  Speaker 2: from a long way. But so we go through the surgery.
• 36:49
  Speaker 2: I want to say the diaper rash was I mean
• 36:56
  Speaker 2: it was a hard week, hard week, maybe two weeks
• 36:59
  Speaker 2: of what felt like never ending results, like you would
• 37:06
  Speaker 2: think you would get ahead and then he'd have a
• 37:08
  Speaker 2: massive blowout that he's out in for two seconds. Because
• 37:12
  Speaker 2: I mean, and here's the other thing that I want
• 37:14
  Speaker 2: to say that I've noticed with hirsprungs. The smell. It
• 37:18
  Speaker 2: has a very distinct smell. It's not like normal baby poop.
• 37:24
  Speaker 2: It's very strong. Yet's's it sounds very weird. It's not
• 37:29
  Speaker 2: saying this but like a sweet, bad baby poops smell.
• 37:34
  Speaker 2: I don't know, I've never smelt anything like it in
• 37:37
  Speaker 2: my life, but I know the minute my son poops
• 37:39
  Speaker 2: or has gas because it's a very strong scent. And
• 37:44
  Speaker 2: you know, I asked the doctor that and I'm like,
• 37:47
  Speaker 2: is this, like, is this a normal like thing for hirsprungs.
• 37:50
  Speaker 2: And again I don't think anybody really knows. He's like,
• 37:52
  Speaker 2: it has a scint and I'm like, oh yeah, and
• 37:55
  Speaker 2: that has a very strong scent like and he says
• 37:57
  Speaker 2: that probably go away. It has not gone away. So
• 38:02
  Speaker 2: that being said, I want to say it was a
• 38:05
  Speaker 2: hard two weeks, which takes an emotional toll on you
• 38:10
  Speaker 2: as a parent because it's one very overwhelming, and two
• 38:16
  Speaker 2: it's just this new world that you never knew existed,
• 38:20
  Speaker 2: because I don't feel like Kirsh s Brung's has talked
• 38:23
  Speaker 2: about enough, which you and I talked about at the beginning.
• 38:27
  Speaker 2: So it's very overwhelming and you do feel very alone
• 38:32
  Speaker 2: there for a very hot moment. But most of all,
• 38:34
  Speaker 2: you just want your baby comfortable because he's already gone
• 38:37
  Speaker 2: through so much that I'm just like, when does he
• 38:41
  Speaker 2: get a break? Like, I mean, he's you know, his
• 38:44
  Speaker 2: butt is raw and out of all of this. Babies
• 38:47
  Speaker 2: are so resilient, and I think that you know, you
• 38:50
  Speaker 2: don't realize that until after the fact and you're put
• 38:53
  Speaker 2: in a situation like this, but they're so tough and
• 38:57
  Speaker 2: hold this is such a happy baby, like even pushing
• 39:01
  Speaker 2: all that aside, like he's just a happy, go lucky
• 39:04
  Speaker 2: baby that puts up with so much. So I'm so
• 39:08
  Speaker 2: we are so over equivocally blessed in that aspect of
• 39:13
  Speaker 2: he's such a good deity and has such a great disposition,
• 39:17
  Speaker 2: subsiding all the utter things that go with it. So
• 39:21
  Speaker 2: my son's overall diagnosis was small. Segment. Hirsch Bung's disease
• 39:27
  Speaker 2: is what he was finally diagnosed with. That is why
• 39:31
  Speaker 2: we did the surgery that we did. But the the
• 39:34
  Speaker 2: the overall the rash is your your heart is eat
• 39:40
  Speaker 2: when they're in diapers, I feel like it comes and
• 39:43
  Speaker 2: it goes, and sometimes it's like so Holt actually has
• 39:48
  Speaker 2: some sparring already, like on his anus from you know,
• 39:53
  Speaker 2: certain spots of where the diaper rash got so bad
• 39:56
  Speaker 2: that I would almost consider it a burn, honest, But
• 40:00
  Speaker 2: I don't feel like that's talked about in the hospital enough.
• 40:03
  Speaker 2: They give you these little sample packets of like forty
• 40:07
  Speaker 2: percent green oxide. But what they don't take an account
• 40:11
  Speaker 2: for is they give you this stuff and they only
• 40:15
  Speaker 2: gave me like twenty little things of these like sample pass.
• 40:21
  Speaker 2: Your deity is probably pooping a lot in a day,
• 40:25
  Speaker 2: and I'm going through those sample pass it's not one
• 40:29
  Speaker 2: or two a day. And then they don't give you
• 40:31
  Speaker 2: more until you go back to the clinic. So as
• 40:36
  Speaker 2: a mom, you have to start doing your research because
• 40:38
  Speaker 2: no one's gonna do it for you, and so there's
• 40:44
  Speaker 2: always a way to figure things out. And that's the
• 40:46
  Speaker 2: other thing I want to note in this is as
• 40:48
  Speaker 2: a mom, just give yourself some grace because you're doing
• 40:53
  Speaker 2: the best you can with something you have no idea
• 40:56
  Speaker 2: of how to maneuver, how to navigate. There's no perfect
• 41:01
  Speaker 2: way to handle Hirshprung. There's not You're gonna have moments
• 41:04
  Speaker 2: where you felt like you have gone twenty steps ahead
• 41:08
  Speaker 2: to feel like you went forty steps backwards. And there's
• 41:12
  Speaker 2: nothing you're doing that's wrong, and there's nothing that you
• 41:15
  Speaker 2: could do better than just love on your baby and
• 41:18
  Speaker 2: do the best that you can and do research. There's
• 41:21
  Speaker 2: forums out there that are all over Facebook of Hirschbrung's
• 41:25
  Speaker 2: moms that I have seen and I love to follow,
• 41:27
  Speaker 2: and I urge anybody that gets that diagnosis plunge into that,
• 41:32
  Speaker 2: because you are going to get more literature there then
• 41:35
  Speaker 2: you're going to get in any hospital room. That's just
• 41:38
  Speaker 2: the truth, whether people want to admit that or not.
• 41:42
  Speaker 2: But again, I think it's just because nobody truly knows
• 41:45
  Speaker 2: what they're dealing with. So I urge any mom to
• 41:49
  Speaker 2: just give yourself some grace, follow in those those forums,
• 41:53
  Speaker 2: follow just do the best you can with that. But
• 41:57
  Speaker 2: there really is there really is hard times that come
• 42:01
  Speaker 2: with it that it feels like it's never ending, and
• 42:04
  Speaker 2: you're not doing the best that you can, and you
• 42:06
  Speaker 2: really do kind of ask yourself. You have pity parties.
• 42:09
  Speaker 2: I'm not gonna sit here and pretend like you don't
• 42:11
  Speaker 2: and go why why did this happened to my kid? Kids? Why?
• 42:17
  Speaker 2: Why my kid? He's such a good kid. Why did
• 42:19
  Speaker 2: did that happen? But I would it teaches you a lot,
• 42:24
  Speaker 2: It puts you. It's very humbling, and that's the other thing.
• 42:27
  Speaker 2: Like I was just talking to my fiance the other
• 42:30
  Speaker 2: day and I said, you know, what do people do?
• 42:33
  Speaker 2: Like for our situation, We've had to go from a
• 42:37
  Speaker 2: two income home to one income home simply for the
• 42:41
  Speaker 2: fact of the care that our son needs, and that
• 42:44
  Speaker 2: I can't expect a daycare provider to drop everything they're
• 42:47
  Speaker 2: doing to make sure that my son is doing all
• 42:52
  Speaker 2: the things he needs to do. He's cooking properly, or
• 42:54
  Speaker 2: the diaper rash is staying up, And you know, I'm like,
• 42:58
  Speaker 2: where is this codered like a disability? Because it kind
• 43:02
  Speaker 2: of is for a while until he can manage it
• 43:07
  Speaker 2: on his own. You know, It's it's not something I
• 43:10
  Speaker 2: would put on someone else. You know, We've been very
• 43:13
  Speaker 2: blessed that we're in a rural community where we are,
• 43:16
  Speaker 2: and we have great and our I'm gonna say our
• 43:20
  Speaker 2: day care. Our daycare is a great in home daycare,
• 43:23
  Speaker 2: and she will take hold in one day a week
• 43:26
  Speaker 2: now that the diaper rash is under control, just to
• 43:29
  Speaker 2: give me a little bit of a break, you know,
• 43:31
  Speaker 2: to kind of give me sometimes it just recoup then
• 43:35
  Speaker 2: get caught back up on simple things. But I would
• 43:38
  Speaker 2: never asked somebody to take my baby in with those
• 43:42
  Speaker 2: kind of circumstances just because it's freaking hard like it is.
• 43:48
  Speaker 2: There's no there's no rhyme or reason. Some days he
• 43:51
  Speaker 2: has belly aches and some days he doesn't. And and
• 43:54
  Speaker 2: again when you start entering the new things, like you know,
• 43:59
  Speaker 2: we had to figure out the soy thing. So he's
• 44:01
  Speaker 2: on alimentum so that's that is a lactose free milk
• 44:06
  Speaker 2: and it works for us, and luckily it hasn't caused
• 44:08
  Speaker 2: him issues. But then you start adding cereals to the milk,
• 44:12
  Speaker 2: well that could start adding more issues. Or you know,
• 44:16
  Speaker 2: now he's on baby foods, so now I have to
• 44:19
  Speaker 2: watch what I'm getting him because I believe it's all
• 44:22
  Speaker 2: dietary that can toss digger hiccups later on, so it
• 44:28
  Speaker 2: seems like it's it's manageable, but you're still learning lots
• 44:32
  Speaker 2: of learning, lots of every day instances of where to
• 44:38
  Speaker 2: from here and just monitoring and going okay, well, bananas
• 44:44
  Speaker 2: said to his stomach, So I'm not going to give
• 44:46
  Speaker 2: him bananas or green beans causes issues or if you
• 44:50
  Speaker 2: still want to implement that, you know, gas drops have
• 44:53
  Speaker 2: been a game changer for us. I've researched multiple different
• 44:57
  Speaker 2: gas drops that seem to we finally have found that,
• 45:00
  Speaker 2: which I'm going to show you at the end of
• 45:01
  Speaker 2: the thing at well whenever, But I did say some
• 45:05
  Speaker 2: things back to kind of show you that have worked
• 45:07
  Speaker 2: for us and our family. And again I know know
• 45:09
  Speaker 2: two were the same, which we've talked about that too,
• 45:12
  Speaker 2: but just any kind of information out there that works
• 45:15
  Speaker 2: for us, I kind of want to help spread just
• 45:17
  Speaker 2: because you don't know when you go in. It is
• 45:20
  Speaker 2: a total blind, citing situation. And you know my fiance
• 45:26
  Speaker 2: and now we're talking about that the other day as well.
• 45:28
  Speaker 2: My goal is eventually to take like Kirshfrung's patience for
• 45:33
  Speaker 2: mom baby bags to the university, just with products and them,
• 45:38
  Speaker 2: because I think it's so it's just not talked about enough,
• 45:42
  Speaker 2: and it's very overwhelming. And you know what, there's so
• 45:46
  Speaker 2: many good things out there that come out of this one.
• 45:50
  Speaker 2: The awareness and to just the appreciation that you have
• 45:54
  Speaker 2: for your other healthy children in a hole and learning
• 45:59
  Speaker 2: how to navigate something that can be very hard but
• 46:02
  Speaker 2: it is manageable, you know. So that is a good thing.
• 46:06
  Speaker 2: There are far worse things in the world. But it's
• 46:09
  Speaker 2: just I always say, he's just extra special. My last
• 46:13
  Speaker 2: one was extra special. If he went out with the
• 46:16
  Speaker 2: bang and he needed all the attention, and here we are,
• 46:19
  Speaker 2: so that's kind of whole story. We navigate through different
• 46:22
  Speaker 2: days differently, but that's kind of his story. I mean,
• 46:27
  Speaker 2: it's just a day at a time. The other thing
• 46:29
  Speaker 2: they say is they can't guarantee that he won't need
• 46:32
  Speaker 2: surgery later in life. You know, that's just one of
• 46:36
  Speaker 2: those things. The other things that they talked about where
• 46:39
  Speaker 2: we are as far is for him. So we're at
• 46:42
  Speaker 2: six months visits now. I think we have one more
• 46:45
  Speaker 2: six month visit and then we go into Yearly's with
• 46:48
  Speaker 2: the specialty clinic. And he said, you know, if I
• 46:53
  Speaker 2: would need to irrigate him often, there's the term it's
• 46:56
  Speaker 2: called irrigating them to where you would need to clean
• 46:59
  Speaker 2: them out. If you would need to irrigate him more
• 47:02
  Speaker 2: often than not, that's when they would start talking about
• 47:05
  Speaker 2: botox injections. I guess in the muscle and the anis
• 47:09
  Speaker 2: to help him. Uh. But what was confusing to me
• 47:13
  Speaker 2: and the diagnosis, which again this is kind of just
• 47:18
  Speaker 2: for each their own, which was kind of weird to me,
• 47:21
  Speaker 2: was what they talk about with a baby is they
• 47:23
  Speaker 2: don't have the build up muscle that a normal adult
• 47:25
  Speaker 2: would to be able to push out poop like a
• 47:28
  Speaker 2: normal person would. So to me, when it was explained
• 47:32
  Speaker 2: when they reconnect in the good tissue, the anus, the
• 47:36
  Speaker 2: whole thing was building up that muscle to the point
• 47:39
  Speaker 2: to where Hulpe could manage going to the battler. So
• 47:44
  Speaker 2: that's where I got confused with the botox because I'm like, well,
• 47:47
  Speaker 2: if he doesn't strain a little bit, it doesn't build
• 47:50
  Speaker 2: up the muscle properly. But then I think about, if
• 47:54
  Speaker 2: you immediately start getting this child botox, aren't you kind
• 47:59
  Speaker 2: of training it to be lazy in a sense, Like
• 48:05
  Speaker 2: I'm one of those people like if it's not broke,
• 48:08
  Speaker 2: don't fix it. So like for us, We've been very
• 48:10
  Speaker 2: fortunate and he's been poothing on his own. I'm not
• 48:13
  Speaker 2: irrigating him or anything like that, but I do think
• 48:17
  Speaker 2: that the gas drops make a huge difference, because like
• 48:20
  Speaker 2: if he's like say, he's fussy or he's whining, or
• 48:25
  Speaker 2: if he gets himself to the point where he kind
• 48:27
  Speaker 2: of sucks in the air, which is a downfall because
• 48:31
  Speaker 2: the more air they stuck in, they get more gas
• 48:33
  Speaker 2: in their belly. They're more upset. But it seems like
• 48:37
  Speaker 2: if they do that, they pass pupil lot easier too,
• 48:40
  Speaker 2: So it's like a double edged sword, it seems like
• 48:43
  Speaker 2: for me, because that's when I noticed that he really
• 48:46
  Speaker 2: has like a big blowout, Like if he gets upset,
• 48:49
  Speaker 2: that's when he's gonna have a blowout. But again, nothing
• 48:54
  Speaker 2: abnormal and nothing like how his stomach was when we
• 48:58
  Speaker 2: ended up in the hospital. To where ever been that hard.
• 49:01
  Speaker 2: We've never had another scare like that again, thank god.
• 49:05
  Speaker 2: To where it was just that hard, I mean, it
• 49:09
  Speaker 2: was unreal. It felt like his stomach was gonna explode.
• 49:11
  Speaker 2: Being completely honest, there was no more room to give
• 49:14
  Speaker 2: for his deli. But that's kind of his story. I
• 49:20
  Speaker 2: don't know what kind of questions you have for me,
• 49:22
  Speaker 2: and but that's his story as far as that goes.
• 49:25
  Speaker 2: But it's just it's a wild ride. I mean, it
• 49:27
  Speaker 2: really is with you and I talked about, you know,
• 49:30
  Speaker 2: kind of at the beginning. It is just I mean,
• 49:33
  Speaker 2: and that's again what makes your podcast so interesting because
• 49:36
  Speaker 2: I even went back and watched other people's podcasts and
• 49:39
  Speaker 2: I'm like, that sounds nothing like my son. But then
• 49:41
  Speaker 2: I'll watch someone else and I'm like, that sounds kind
• 49:44
  Speaker 2: of like what I went through, but not exactly, So
• 49:48
  Speaker 2: no two are the same. That's a true statement with this.
• 49:51
  Speaker 1: It's like exactly, Wow, thank you so much for sharing
• 49:57
  Speaker 1: because I mean, one thing that I've completely forgot to
• 49:59
  Speaker 1: say say at the beginning, and you mentioned it there
• 50:03
  Speaker 1: is your you're only six months postpartum, and which I
• 50:07
  Speaker 1: think to them, do that they have the wherewithal to
• 50:11
  Speaker 1: cover the podcast and talk so brilliantly as you have.
• 50:14
  Speaker 1: Kudos to you because I don't think there's many people
• 50:17
  Speaker 1: in the world that six months after having a baby
• 50:20
  Speaker 1: would go I'm going to come and all of the
• 50:24
  Speaker 1: the everything that's happened to the drawer associated with Hirschbrungs
• 50:27
  Speaker 1: and everything you've had to learn to go. I'm going
• 50:29
  Speaker 1: to go and do a podcast now. So I think
• 50:32
  Speaker 1: you're absolutely amazing for to that.
• 50:35
  Speaker 2: Well, I think what you do is amazing. And I
• 50:38
  Speaker 2: date TikTok. That's where I had found your platform. I
• 50:42
  Speaker 2: think it's such a huge deal to bring such a
• 50:46
  Speaker 2: you know, with your platform. I think it's fantastic that
• 50:48
  Speaker 2: you're bringing awareness because it's there's not enough. There isn't enough,
• 50:52
  Speaker 2: it's not talked about enough. It's not you know. So
• 50:55
  Speaker 2: when I started putting that tag in on my videos
• 50:58
  Speaker 2: that I was going and again I took those down.
• 51:01
  Speaker 2: I didn't take them down. They started to like TikTok
• 51:05
  Speaker 2: is such a beast of its own. Sometimes it works
• 51:07
  Speaker 2: and sometimes it doesn't. So it like broke all my
• 51:11
  Speaker 2: videos and they were not in the right order, and
• 51:13
  Speaker 2: I'm like, no, I'm just taking them off and I'll restart,
• 51:17
  Speaker 2: or I'll share his podcast afters and die and I
• 51:19
  Speaker 2: can share a story that way. But I just wanted
• 51:22
  Speaker 2: to bring awareness because I feel like there's not enough
• 51:26
  Speaker 2: platform for it, and I did. I started reaching out
• 51:29
  Speaker 2: to companies that I have found personally in the US
• 51:32
  Speaker 2: that have worked for me and my son and I'm like,
• 51:35
  Speaker 2: I need you guys to understand there's a big niche
• 51:37
  Speaker 2: for what you have here, and I think it's something
• 51:40
  Speaker 2: that you should really offer to other parents. And I
• 51:44
  Speaker 2: think it's something you know. That's why I wanted to
• 51:46
  Speaker 2: make a giddy bag for moms, because there really is
• 51:50
  Speaker 2: no direction after you leave the hospital. It's here's the
• 51:53
  Speaker 2: STATEY navigate it the way they tell you, but your
• 51:56
  Speaker 2: baby may not be navigated that way. And I think
• 51:59
  Speaker 2: it's very of setting as a mom, because it's your
• 52:03
  Speaker 2: job to nurture first of all, and when you can't
• 52:06
  Speaker 2: make your baby one hundred percent perfect and you can't,
• 52:10
  Speaker 2: you feel like you're not getting anyone. That is so
• 52:12
  Speaker 2: frustrating and I am I'm sure any mom can attest
• 52:16
  Speaker 2: to this. You are your own worst enemy. You're going
• 52:18
  Speaker 2: to beat yourself up and you're like, how did I
• 52:22
  Speaker 2: end up with this child? And can I do this?
• 52:24
  Speaker 2: That is a huge question that I had even at
• 52:26
  Speaker 2: the beginning of our journey, because I'm like, how do
• 52:30
  Speaker 2: you do this? What is the right thing to do?
• 52:32
  Speaker 2: What you know? And nobody can tell me because there's
• 52:34
  Speaker 2: no one else I know that their kid has hirshbrunks
• 52:37
  Speaker 2: so when somebody's talking to me and they're telling me
• 52:40
  Speaker 2: about what they well, what is what I use back
• 52:43
  Speaker 2: in the nineties for diaper rash cream. It's not the same,
• 52:49
  Speaker 2: Thank you, but it's not the same. So I am
• 52:52
  Speaker 2: going to show you some products that I did that
• 52:55
  Speaker 2: did work for me. And again I don't know if
• 52:57
  Speaker 2: you guys have these over there or not, but these
• 53:00
  Speaker 2: are things that did work for me and my son.
• 53:02
  Speaker 2: So aqua floor baby, and maybe we'll get sponsorship out
• 53:07
  Speaker 2: of this, both me and you. Yeah, yeah, we'll stilly
• 53:10
  Speaker 2: fifty no aquacor baby. So this is always what I
• 53:16
  Speaker 2: start with. For hole, it just goes over the skin first,
• 53:20
  Speaker 2: it kind of layers over the skin. I put it
• 53:22
  Speaker 2: anywhere that I kind of remotely think that he'll go
• 53:24
  Speaker 2: to the bathroom or have poop. But then this is
• 53:28
  Speaker 2: the Holy Grail. This right here will change your life.
• 53:33
  Speaker 2: This is a forty percent zinc op side and it
• 53:37
  Speaker 2: has a million and one different things, Like it just
• 53:41
  Speaker 2: is the goat I use the normal stuff are my
• 53:44
  Speaker 2: other kiddos. That's not a forty percent the triple paste,
• 53:48
  Speaker 2: but it is changed. It has changed everything. They had
• 53:54
  Speaker 2: it in a tub and that's originally why I reached
• 53:57
  Speaker 2: out to the company. So we go through the things.
• 54:00
  Speaker 2: They're twenty bucks a piece each of them weekly because
• 54:05
  Speaker 2: there's just so much that you have to use it.
• 54:08
  Speaker 2: I mean there's I would pay one hundred dollars for
• 54:10
  Speaker 2: it because it works. Please don't mark it up. I would.
• 54:15
  Speaker 2: I would pay one hundred bucks sport because it has worked,
• 54:18
  Speaker 2: it is tried and true. That is what we use
• 54:21
  Speaker 2: on him. And then this is the other thing that
• 54:24
  Speaker 2: I've found. These are gas drops. I use it once
• 54:28
  Speaker 2: a day and holds milk and it has changed the
• 54:31
  Speaker 2: game too. But it's just a little bitty drop of it.
• 54:36
  Speaker 2: You put it in his milk, you can mix it
• 54:38
  Speaker 2: in with their food. But those are all things that
• 54:42
  Speaker 2: work for us, and I know that they won't work
• 54:44
  Speaker 2: for everybody else. But the one thing I will stay,
• 54:47
  Speaker 2: you know, going into our clinic. One doctor g is phenomenal.
• 54:53
  Speaker 2: He's actually from Egypt originally, and he is a phenomenal doctor.
• 54:59
  Speaker 2: He has listened to every reconcern I have. He has
• 55:01
  Speaker 2: been amazing bed side manner and actually the funny thing
• 55:05
  Speaker 2: that he's known for is all of his surgery bandages.
• 55:10
  Speaker 2: He makes them, the covers up the cover up he
• 55:13
  Speaker 2: does on the after surgery, they will have smiley faces
• 55:17
  Speaker 2: on him. I've kept all of folds he puts smiley
• 55:20
  Speaker 2: faces all over them on those bandages, and I've kept
• 55:24
  Speaker 2: holts from all of his surgeries that he's had. But
• 55:28
  Speaker 2: very cool that The other thing that I think is remarkable,
• 55:32
  Speaker 2: and I feel like every parent should have this kind
• 55:36
  Speaker 2: of relationship with their doctor. Every diagnosis that I've gotten
• 55:41
  Speaker 2: has physically come from doctor G. He is them the
• 55:44
  Speaker 2: one to call me. It's not a nurse calling me,
• 55:46
  Speaker 2: it's doctor G. He calls me, He tells me what
• 55:49
  Speaker 2: he sees, he tells me where we go from there.
• 55:52
  Speaker 2: And the other cool thing that happened. And I don't
• 55:55
  Speaker 2: think this has talked about enough, which I have extreme
• 55:58
  Speaker 2: gratitude for him because he he's just completely changed our life.
• 56:03
  Speaker 2: But the cool thing that he did do is I
• 56:05
  Speaker 2: went in there and I had told him exactly what
• 56:07
  Speaker 2: I told you about all this products that i'd been using,
• 56:11
  Speaker 2: and he took pictures with his phone and yeah, they
• 56:14
  Speaker 2: can take pictures with their phone, that doesn't mean they're
• 56:17
  Speaker 2: listening to you. He took pictures with his phone, and
• 56:20
  Speaker 2: I get a call from him about seven o'clock a
• 56:23
  Speaker 2: week later, and he goes, I want you to know
• 56:26
  Speaker 2: that I had recommended your products to another Hirschbrun's mom
• 56:30
  Speaker 2: and it's working for the baby. And I just wanted
• 56:33
  Speaker 2: to tell you thank you, because people don't tell us
• 56:36
  Speaker 2: stuff like this enough and it does make a difference.
• 56:39
  Speaker 2: And I think that that is the other thing I
• 56:41
  Speaker 2: wanted to bring awareness to kind of one of those things.
• 56:44
  Speaker 2: If you see something, say something, and if it works
• 56:47
  Speaker 2: for you and it works for your baby, there is
• 56:49
  Speaker 2: no shame telling people what that is. It feels like
• 56:52
  Speaker 2: almost people gatekeep, which is such a weird thing. I'm like,
• 56:57
  Speaker 2: there's dat de velt there struggling, and don't gate keep,
• 57:01
  Speaker 2: like just share it, like and I that was the
• 57:03
  Speaker 2: other thing, like I could help one mom and another baby.
• 57:07
  Speaker 2: I will share and share and share and share until
• 57:10
  Speaker 2: I'm blue in the face because it is hard. It's
• 57:13
  Speaker 2: really hard, you know. And I went, I was very blessed,
• 57:17
  Speaker 2: blessed with three other kids that you know, never had
• 57:21
  Speaker 2: that kind of need of attention. But again, my guy
• 57:25
  Speaker 2: had told you that with all the testing and stuff.
• 57:28
  Speaker 2: Here in the United States, they say it's seventeen percent familial,
• 57:32
  Speaker 2: which again is a weird number that you and I
• 57:35
  Speaker 2: talked about that could be a very weird number to
• 57:38
  Speaker 2: go off of. So with that being said, and based
• 57:41
  Speaker 2: off of LST diagnosis, they did not have us new
• 57:44
  Speaker 2: genetic testing within our family. And that was a worry
• 57:47
  Speaker 2: for me because I'm like, if my girls have it,
• 57:50
  Speaker 2: can they have babies with Hirschbrun's disease? Or can hold
• 57:55
  Speaker 2: have a baby with another person and or does the
• 57:59
  Speaker 2: baby have Hirshbruns. But again you and I also talked
• 58:02
  Speaker 2: about that is not a proven fact either, So it's
• 58:06
  Speaker 2: it's kind of just one of those things we are
• 58:08
  Speaker 2: all doing research in all guinea pigs, I think at
• 58:11
  Speaker 2: this point, which is sad to say that, it sounds
• 58:14
  Speaker 2: like that's kind of the case with this is ease
• 58:16
  Speaker 2: and very underdiagnosed. It sounds like lots of people probably
• 58:20
  Speaker 2: in the world have it that have never been diagnosed
• 58:23
  Speaker 2: a little bit.
• 58:24
  Speaker 1: Yeah, yeah, exactly. I mean, it's the familiaral stuff it is.
• 58:30
  Speaker 1: Genetics is something that absolutely fascinates me because I just
• 58:34
  Speaker 1: think it's why do people get Hirshbrungs. Nobody can, nobody
• 58:40
  Speaker 1: can ever answer that, you know, why when? And this
• 58:43
  Speaker 1: obviously seems to be a there is a family the
• 58:46
  Speaker 1: amount of people that I've spoken to who have Hirshbrungs
• 58:49
  Speaker 1: then go on to have children with Hirshbrungs. But again
• 58:51
  Speaker 1: it's not all the time, and it's not specific to
• 58:54
  Speaker 1: one type of Hirshbrungs either. So it's yeah, I just
• 58:59
  Speaker 1: think that top of things for.
• 59:01
  Speaker 2: It is. And it may keep thig like is it
• 59:04
  Speaker 2: a gene? Is it a mutate gene that you know?
• 59:07
  Speaker 2: But again it's a non specific mutate gene if it
• 59:10
  Speaker 2: is a gene, because like you said, it's not like
• 59:15
  Speaker 2: it's not one way or the other. It doesn't mean
• 59:17
  Speaker 2: that that child's also going to have a short segment
• 59:20
  Speaker 2: or that it won't have large segment or you know.
• 59:23
  Speaker 2: And that's the crazy thing to me, is because it
• 59:26
  Speaker 2: sounds like all the science that's behind it is moving
• 59:29
  Speaker 2: in the right direction, but it just sounds like in
• 59:32
  Speaker 2: each case is a little bit different. Like I've read
• 59:36
  Speaker 2: that some of them have awesome is it is astome
• 59:40
  Speaker 2: dads till they're like nine months because if that's the
• 59:45
  Speaker 2: large segment, they can't fully do their reconnection because they're
• 59:49
  Speaker 2: not big enough at you know. The age dr is
• 59:52
  Speaker 2: a new wars, so you're gonna have to wait until
• 59:55
  Speaker 2: they're bigger to perform that kind of surgery. So those
• 59:57
  Speaker 2: were all things we've been into it. When we went
• 1:00:00
  Speaker 2: into the surgery, there was a lot of unknown and
• 1:00:03
  Speaker 2: no guarantee. It sounded like everything was. When they went
• 1:00:07
  Speaker 2: in and opened him up, that's when they which I
• 1:00:10
  Speaker 2: think all holts was laparoscopic, so they went through the
• 1:00:14
  Speaker 2: belly button. There was like I think a total of
• 1:00:17
  Speaker 2: five spots five spots, and then he has the larger
• 1:00:21
  Speaker 2: incision from when they did the exploratory but all very
• 1:00:25
  Speaker 2: little incisions where they originally had went in and done
• 1:00:28
  Speaker 2: the surgery itself for to reconnection. I guess the other
• 1:00:33
  Speaker 2: thing that I would want to tell someone because I
• 1:00:37
  Speaker 2: was shocked, and I don't know why I was shocked,
• 1:00:39
  Speaker 2: but after they do the surgery, I did not realize
• 1:00:43
  Speaker 2: that you could see like the reconnection area of like
• 1:00:47
  Speaker 2: the the I guess the stitches, like you could see
• 1:00:51
  Speaker 2: hold stitches. And that blew my mind because I'm like,
• 1:00:55
  Speaker 2: how does a baby not get in an infection when
• 1:00:58
  Speaker 2: they're pooping on it incision site? But they don't. He
• 1:01:05
  Speaker 2: didn't and it never got like weirn or anything, But
• 1:01:09
  Speaker 2: dad did blew in my mind when I was changing
• 1:01:11
  Speaker 2: him that his diaper, I'm like, oh my god, are
• 1:01:13
  Speaker 2: those stitches? But again they had showed how I guess
• 1:01:16
  Speaker 2: they have to stretch that area, so it kind of
• 1:01:20
  Speaker 2: is lax right after surgery. So that's the other ding
• 1:01:23
  Speaker 2: I would urge another parent, Do not be surprised it
• 1:01:25
  Speaker 2: is there, don't be shocked, don't think something's wrong, not
• 1:01:30
  Speaker 2: But those are just all things that kind of stick
• 1:01:32
  Speaker 2: in my brain. But I think the biggest thing to
• 1:01:35
  Speaker 2: note is always trust your gut. Always know as a
• 1:01:38
  Speaker 2: parent you have to advocate for your child. I understand
• 1:01:42
  Speaker 2: that there probably are some not good healthcare people out there,
• 1:01:46
  Speaker 2: but there also are some really good healthcare keeple out
• 1:01:48
  Speaker 2: there that genuinely care. And I hope that anybody that
• 1:01:50
  Speaker 2: goes through this experience is at least one of those people,
• 1:01:54
  Speaker 2: because it's a very trying time. It's very hard, and
• 1:01:58
  Speaker 2: people that don't understand that, I wouldn't ever wish that
• 1:02:02
  Speaker 2: on them. But I also know how hard it is
• 1:02:05
  Speaker 2: to explain to someone a disease that you don't even
• 1:02:08
  Speaker 2: understand yourself, because people have questions, well, what is this then?
• 1:02:14
  Speaker 2: Why is it like this, and you just look at
• 1:02:16
  Speaker 2: them and you're like, I can't tell you why I can't.
• 1:02:20
  Speaker 2: Don't mind that fly. Oh, I can't tell you he
• 1:02:23
  Speaker 2: wanted to be in your podcast too. Oh. But you
• 1:02:27
  Speaker 2: know it's just like, yeah, it's hard. It is hard,
• 1:02:32
  Speaker 2: but you know, there are really good people out there.
• 1:02:35
  Speaker 2: And I hope that as you know, things get more
• 1:02:38
  Speaker 2: advanced in the technology area, maybe more answers will come about,
• 1:02:43
  Speaker 2: you know, for people that have so many questions, because
• 1:02:46
  Speaker 2: there are a lot of unknowns. And I think that's
• 1:02:48
  Speaker 2: what's scary about it, because I actually do know what
• 1:02:51
  Speaker 2: person not to go too off or off topic. But
• 1:02:56
  Speaker 2: there is another person in the area that I'm in
• 1:02:59
  Speaker 2: not far from me, and she has I believe four children,
• 1:03:03
  Speaker 2: and two out of the floor ended up with hirsprungs.
• 1:03:08
  Speaker 2: And what was crazy is she her other children, which
• 1:03:13
  Speaker 2: I don't want to speak too much on it just
• 1:03:14
  Speaker 2: because they're not my children, right, she they also had
• 1:03:18
  Speaker 2: another kind of disease that had paired up with the
• 1:03:21
  Speaker 2: hirshprons so and it was the same disease that had
• 1:03:25
  Speaker 2: paired up on both of her children with hirshprungs. So
• 1:03:29
  Speaker 2: that is the other thing that I'm finding that sometimes
• 1:03:32
  Speaker 2: maybe the diagnosis isn't just hirsprungs. There's something that underlays
• 1:03:37
  Speaker 2: with it, which is kind of crazy.
• 1:03:40
  Speaker 1: Yeah. No, absolutely, it does have lots of other associated
• 1:03:44
  Speaker 1: things with it. She was definitely. But no, thank you
• 1:03:49
  Speaker 1: so so much for sharing, because this has been yeah,
• 1:03:52
  Speaker 1: fascinating episode. And just just finally, I know you touched
• 1:03:55
  Speaker 1: a little bit on Holt's future and check out and appointments,
• 1:04:00
  Speaker 1: et cetera. But what do you kind of hope for
• 1:04:03
  Speaker 1: for him in the near future.
• 1:04:07
  Speaker 2: Gosh, I just hope for him in the near future.
• 1:04:11
  Speaker 2: I just wanted to keep going smooth, I do. I
• 1:04:16
  Speaker 2: just I want I want that normalacy. But I will
• 1:04:19
  Speaker 2: tell you there are fears as a mom going into
• 1:04:24
  Speaker 2: this that the unknown probably eats you alive more than not.
• 1:04:28
  Speaker 2: And you probably wouldn't say it out loud as a caretaker,
• 1:04:33
  Speaker 2: but the world is mean, and the thing that worries
• 1:04:37
  Speaker 2: me most for Holt is what school future looks like
• 1:04:42
  Speaker 2: with the gas or with the the agitations with things
• 1:04:48
  Speaker 2: or you know, my hope for my son is that
• 1:04:51
  Speaker 2: he just brings the kindness to the world that we
• 1:04:56
  Speaker 2: don't see often anymore. And a resilience that you know,
• 1:05:01
  Speaker 2: people look at him and go, wow, hold such a
• 1:05:04
  Speaker 2: nice person, and look at what he's been through and
• 1:05:07
  Speaker 2: he holds his head high and yes he's different, but
• 1:05:11
  Speaker 2: you know what, he's here, he's doing things, he's working
• 1:05:14
  Speaker 2: hard towards things, and he's you know, advocating for people
• 1:05:19
  Speaker 2: that are going through this too. And I just hope
• 1:05:22
  Speaker 2: that brings awareness to people where it's at. And I
• 1:05:27
  Speaker 2: also hope that other people also educate their children that
• 1:05:32
  Speaker 2: people are different and that you know, kids aren't mean
• 1:05:36
  Speaker 2: to him, because that is a fear for me as
• 1:05:38
  Speaker 2: a mom moving forward, because in a world of not
• 1:05:42
  Speaker 2: nice kids, there's also not nice adults that don't educate enough.
• 1:05:46
  Speaker 2: And I hope and pray that people that have never
• 1:05:49
  Speaker 2: gone through this can look at people that have gone
• 1:05:52
  Speaker 2: through this and understand as a parent that we just
• 1:05:56
  Speaker 2: need to teach our kids to be kind. And that's
• 1:06:00
  Speaker 2: thing that I teach all of my kids, and my
• 1:06:02
  Speaker 2: kids all have each other's back. They know that there's
• 1:06:04
  Speaker 2: nothing stronger in this world that you can depend on
• 1:06:08
  Speaker 2: other than your siblings, because those are the people of
• 1:06:10
  Speaker 2: your leaftop when your parents are gone, and it's so
• 1:06:14
  Speaker 2: important and you know, I just I want to bring
• 1:06:18
  Speaker 2: awareness to the world of what we went through. And
• 1:06:23
  Speaker 2: it is not a cookie cutter ideal thing, but I
• 1:06:28
  Speaker 2: just I want I want happy for my kid. I
• 1:06:31
  Speaker 2: want him to bring awareness, be happy, and I want
• 1:06:34
  Speaker 2: him to live a life that he's proud of and
• 1:06:38
  Speaker 2: just have the education and spread it to other people,
• 1:06:41
  Speaker 2: you know, because that's where it's at, and that's how
• 1:06:44
  Speaker 2: we all learn and work together, learning about more things
• 1:06:46
  Speaker 2: than But honestly, it's word of mouth that's educating anybody
• 1:06:51
  Speaker 2: on this I diagnosis at this point, So you know,
• 1:06:55
  Speaker 2: that's what I hope. I hope that the world is
• 1:06:58
  Speaker 2: just kind and I hope that my contributes to that.
• 1:07:02
  Speaker 1: Absolutely no, incredibly well said. But Ken, thank you so
• 1:07:06
  Speaker 1: so much for coming on. This has been fascinating to
• 1:07:09
  Speaker 1: listen to, and I wish you Hold and the rest
• 1:07:14
  Speaker 1: of your family all the very very best for the future.
• 1:07:17
  Speaker 1: Thank you so much for coming on.
• 1:07:20
  Speaker 2: Thank you so much for having me. I appreciate you
• 1:07:22
  Speaker 2: and you spreading your awareness as well.
• 1:07:27
  Speaker 1: Thank you for listening and being part of this growing community.
• 1:07:30
  Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
• 1:07:33
  Speaker 1: leave a review, and share it with someone who might
• 1:07:35
  Speaker 1: need it. You can connect with us on social media
• 1:07:38
  Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's podcast,
• 1:07:44
  Speaker 1: See You next Week. It was today