Latest / Tom's Hirschsprung's Podcast / Episode 102 - With Lillie Walizer

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Episode 102 - With Lillie Walizer · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: Hello, and welcome to episode one hundred and two of
• 0:06
  Speaker 1: Tom's Hirshbung's podcast. I am delighted to be joined this
• 0:10
  Speaker 1: evening by Lily. Lily, welcome to the podcast. Thank you, Hello,
• 0:16
  Speaker 1: thanks so much for coming on. We are here to
• 0:19
  Speaker 1: talk about another Hirshbrung's story, and lots has happened in
• 0:25
  Speaker 1: this story, but this is a real sort of feel
• 0:28
  Speaker 1: good one as well. I believe we'll obviously you will
• 0:33
  Speaker 1: tell a lot more later on, but I guess we'll
• 0:38
  Speaker 1: kind of start well wherever you want to, really, we
• 0:41
  Speaker 1: can start from the beginning if you want so.
• 0:45
  Speaker 2: I we went to the hospital January thirty first, because
• 0:49
  Speaker 2: that was originally my du date and I was feeling
• 0:53
  Speaker 2: a lot of pain, so they went ahead and induced
• 0:55
  Speaker 2: me and the labor went beautifully. I had him out
• 1:00
  Speaker 2: four in the morning. By three point thirty that afternoon,
• 1:04
  Speaker 2: I went to put him down to swaddle him, and
• 1:06
  Speaker 2: he choked and turned blue. Nick You nurses came rushing
• 1:12
  Speaker 2: in and they took him to the nick You to
• 1:13
  Speaker 2: do some tests and kind of feed him because he
• 1:16
  Speaker 2: was not taking any bottles or any fluids, like, he
• 1:19
  Speaker 2: wasn't accepting nothing. So when they took an ultrasound, they
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  Speaker 2: realized that he had a blockage in his abdomen that
• 1:28
  Speaker 2: was right near his colon. So they kind of watched
• 1:34
  Speaker 2: it and kind of took ultrasounds every day and was like, okay,
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  Speaker 2: it was a it's like a small regional hospital that
• 1:41
  Speaker 2: I gave birthday. So they went ahead after the fourth
• 1:45
  Speaker 2: day to transfer him to a major children's hospital where
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  Speaker 2: they have more machines and more equipment to do more work.
• 1:54
  Speaker 2: So about the fifth day of us getting to the
• 1:57
  Speaker 2: hospital and getting comfortable, they decided to take a piece
• 2:02
  Speaker 2: of his colon out kind of do a little procedure
• 2:06
  Speaker 2: to where they took a good piece of it and
• 2:08
  Speaker 2: kind of watched it grow over the next couple of
• 2:10
  Speaker 2: days to see if there was no nerves or nerves
• 2:14
  Speaker 2: and his colon. So, I want to say, maybe after
• 2:18
  Speaker 2: a good three four days of it growing, they came
• 2:21
  Speaker 2: back and told us that it had not grown nerves
• 2:25
  Speaker 2: and that he does have a condition called Hirshprung's disease.
• 2:29
  Speaker 2: Me and my wife were kind of looking at each
• 2:31
  Speaker 2: other like, oh, no, like you know, what was that.
• 2:34
  Speaker 2: You know, we're very unfamiliar with it. I've never heard
• 2:37
  Speaker 2: of it. And he's like, Okay, this is what's gonna happen.
• 2:40
  Speaker 2: So it kind of sat us down and he explained
• 2:42
  Speaker 2: to us. And the major thing he explained to us
• 2:45
  Speaker 2: is Hirshprung's enter colitis, which is fevers, disgusting poop, are tummy,
• 2:59
  Speaker 2: things like that, and it could be very fatal within
• 3:02
  Speaker 2: twenty four hours if not treated. So kind of explained,
• 3:06
  Speaker 2: kind of watched Oakley my son a little bit, and
• 3:10
  Speaker 2: maybe a week after they decided, okay, let's let's feed them.
• 3:14
  Speaker 2: And he did amazing with feeding, and he said, we're
• 3:19
  Speaker 2: going to start something called irrigation to where so we
• 3:24
  Speaker 2: put trying to think of the words to say it
• 3:28
  Speaker 2: without we put. They gave us a host to flush
• 3:34
  Speaker 2: fluid and push fluid up his rectum to kind of
• 3:37
  Speaker 2: try to pull everything out, and he did beautifully with that.
• 3:42
  Speaker 2: So after a good fifteen days of being in the
• 3:44
  Speaker 2: neck youth, they decided that he was doing amazing and
• 3:48
  Speaker 2: they've never seen a baby with this kind of condition
• 3:50
  Speaker 2: that was doing so well. So they sent us home
• 3:53
  Speaker 2: for about three and a half weeks until they were
• 3:56
  Speaker 2: planning to do a major surgery called a pool through.
• 4:02
  Speaker 2: They gave us the day go through surgery. We arrived
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  Speaker 2: at the Children's hospital. We went back into the room
• 4:08
  Speaker 2: to wait. They did their test. They the surgeon had
• 4:12
  Speaker 2: came in. He has an amazing surgeon team, Like I
• 4:14
  Speaker 2: wouldn't trade his surgeon in for the world. So they
• 4:20
  Speaker 2: came in. They were like, okay, we're going to take
• 4:22
  Speaker 2: him back. It was a four and a half hour surgery.
• 4:26
  Speaker 2: They when the surgeon came back out to tell me
• 4:29
  Speaker 2: after surgery, he told me that he had put four
• 4:32
  Speaker 2: small incisions into his belly with a camera to kind
• 4:35
  Speaker 2: of look around and see where that dead piece of
• 4:37
  Speaker 2: colon was. He went up through his rectum with a
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  Speaker 2: laser and decided to cut a good chunk of his
• 4:45
  Speaker 2: colon and he pulled it to his rectum and they
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  Speaker 2: watched him for a couple of days until he went
• 4:52
  Speaker 2: to the bathroom. And once he started going to the bathroom,
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  Speaker 2: they decided to send us home. And now we see
• 4:58
  Speaker 2: him every three months to get checkups or.
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  Speaker 1: Right, I mean, that's that as a heck of a
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  Speaker 1: first few Well, yeah, a couple of weeks. Give will
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  Speaker 1: take the fifteen days you said in the nick queue,
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  Speaker 1: which is yeah, a long time to spend to spend
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  Speaker 1: there right, and then when the son when the so
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  Speaker 1: when they did the initial the biopsy, when because sometimes
• 5:30
  Speaker 1: some doctors and surgeons are different in the way they
• 5:33
  Speaker 1: explain how much of the colons affected. So did they
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  Speaker 1: say whether it was a short segment long segment, or
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  Speaker 1: it was.
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  Speaker 2: After they watched it for a couple of days and
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  Speaker 2: realized they had told us that it was a short.
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  Speaker 1: Segment, short segment, yes, which.
• 5:51
  Speaker 2: Was very by the grace of God, it was a
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  Speaker 2: very tiny piece.
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  Speaker 1: YEA. Yes, I think from the research I've done and
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  Speaker 1: from people have spoken to, short segment is the most common,
• 6:04
  Speaker 1: with it being I think about eighty percent give or
• 6:06
  Speaker 1: take right on.
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  Speaker 2: With the long segment, they do require them removing the
• 6:12
  Speaker 2: colon and putting a colossum bag in, which was an
• 6:16
  Speaker 2: option if the pull through surgery did not go amazingly
• 6:19
  Speaker 2: and successful.
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  Speaker 1: Yeah, I guess that's the thing as well. With with
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  Speaker 1: they can do the biopsy, but until they've actually been
• 6:28
  Speaker 1: in there, right, they don't always know exactly how much
• 6:34
  Speaker 1: they're going to take out. I don't think right. Some
• 6:37
  Speaker 1: some surgeries say that they'll they give you it in measurements.
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  Speaker 1: Some just say short long. Ulder short, right, political, whatever
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  Speaker 1: it may be. But no, that definitely sounds and a
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  Speaker 1: lot of people come to me and they say, oh, well,
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  Speaker 1: Hirshprung's is genetic, or it's you know this that the
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  Speaker 1: other I'm presuming this is not a condition ever heard
• 7:00
  Speaker 1: of before, right, So those sort of history of anything
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  Speaker 1: within nothing.
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  Speaker 2: Yes, my side of the family does not have it.
• 7:10
  Speaker 2: My wife's side of the family does not have it.
• 7:14
  Speaker 2: We went through an IVF clinic to have a baby,
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  Speaker 2: and that person that we went through they didn't have it,
• 7:22
  Speaker 2: you know, the person so it and his medical team
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  Speaker 2: did say it is a very common disease, and most
• 7:30
  Speaker 2: people don't know about it until they go home and
• 7:33
  Speaker 2: years later. Really, yes, he said. So a lot of
• 7:40
  Speaker 2: people when babies are born and and you think, oh,
• 7:43
  Speaker 2: your baby can't go to the bathroom, Oh it's normal
• 7:45
  Speaker 2: because they were in the belly for so long, or
• 7:48
  Speaker 2: oh it's the milk, or you know, you you tend
• 7:50
  Speaker 2: to think of so many things, and then when you
• 7:52
  Speaker 2: finally go and be like, hi, you know, my baby
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  Speaker 2: is really crying and really upset. You know, then they
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  Speaker 2: do tests and a lot of people are when they
• 8:00
  Speaker 2: hear that word. I had to explain to my whole
• 8:03
  Speaker 2: family about it.
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  Speaker 1: Oh, I can imagine he did. Yeah, it's it's one
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  Speaker 1: of those conditions where it's not a it's not a
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  Speaker 1: two minute explanation either. Right, well, I don't imagine it.
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  Speaker 1: It's like, right, okay, this is this and then this happens,
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  Speaker 1: and I imagine it. It was a little bit of
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  Speaker 1: a more of a sit down conversation. Is that right?
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  Speaker 2: Right? Right along? Sit down conversation and okay, this is
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  Speaker 2: what happened. I had to draw them a picture of
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  Speaker 2: what the surgeon drawed me and showed them.
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  Speaker 1: And yes, wow, so yeah it is. Yeah, it's a
• 8:36
  Speaker 1: complicated illness. But that's interesting that they believe that it's
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  Speaker 1: more common than I mean, the generic terms. Obviously one
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  Speaker 1: in one in five thousand, right, right, I think makes
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  Speaker 1: us rare, but not like ultra rare. I don't. I
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  Speaker 1: don't know, right, But from some of the surgeons I've
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  Speaker 1: spoken to, they have of the same opinion where they think, actually,
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  Speaker 1: it's more than it's more than that. It's probably more
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  Speaker 1: like one in three and a half thousand or four thousand,
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  Speaker 1: or whatever it might be. And that might be the reason,
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  Speaker 1: as you said, I know I'm just sort of surmising here,
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  Speaker 1: but that might be the reason you said some people
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  Speaker 1: might actually not know they've had it, or do I say,
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  Speaker 1: have it or have it until until they go home,
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  Speaker 1: and they may think I actually have struggled with stomach issues, right,
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  Speaker 1: and might not even because like you said, you know,
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  Speaker 1: you went to a smaller hospital and then a larger
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  Speaker 1: regional hospital. A lot of the small hospitals I can't imagine,
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  Speaker 1: I've heard of Hirschbrung's a great deal, right.
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  Speaker 2: Right, or they don't have the equipment to be able to,
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  Speaker 2: you know, do small procedures like that. Because the hospital
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  Speaker 2: we went to was very small. I'm very very small,
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  Speaker 2: their NICKI is very small. And when they transferred us
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  Speaker 2: to the children's hospital, as soon as I was there,
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  Speaker 2: they were able to explain to me what was going
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  Speaker 2: on and what they were going to do and what tests,
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  Speaker 2: you know, then waiting four days for answers, you know,
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  Speaker 2: I got answers right away, and they started doing stuff
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  Speaker 2: the next day he arrived. Yeah.
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  Speaker 1: Yeah, And obviously that that's far helpful for both of
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  Speaker 1: you as well, right, far more helpful than sort of
• 10:22
  Speaker 1: coming back waiting and then like the biopsy for example,
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  Speaker 1: doing the biopsy. You can have that sort of that
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  Speaker 1: can then come back pretty quickly rather than going away
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  Speaker 1: for I think four days or something.
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  Speaker 2: Right and not no nothing, no.
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  Speaker 1: No, yes. So when so you said you were in
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  Speaker 1: the nick, you for about fifteen fifteen days or so days?
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  Speaker 1: How did you, I guess pass the time in that
• 10:50
  Speaker 1: fifteen fifteen day period, because I know that can be
• 10:54
  Speaker 1: having spoken to a lot of mothers, it's that sort
• 10:58
  Speaker 1: of you can't necessarily do anything, you can't leave, you
• 11:03
  Speaker 1: can't you know, do the operations yourself. How did you
• 11:08
  Speaker 1: kind of negotiate that?
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  Speaker 2: So the main thing that I did was take a
• 11:13
  Speaker 2: lot of walks outside of the hospital is a beautiful
• 11:18
  Speaker 2: walk round as well as a mini golf like thing
• 11:22
  Speaker 2: that you can play mini golfing, and there's a basketball hoop.
• 11:25
  Speaker 2: So there was a lot of things to do outdoors
• 11:28
  Speaker 2: and we did. We went to a lot of like
• 11:30
  Speaker 2: activities they had in the hospital, coloring, you know, make
• 11:33
  Speaker 2: you a basket, you know. I went and made a
• 11:35
  Speaker 2: lot of things for my son, you know, to help
• 11:37
  Speaker 2: pass the time, and we ended up staying in his
• 11:41
  Speaker 2: room with him the whole fifteen days. They let the
• 11:44
  Speaker 2: parents stay so yeah, we did not leave one day.
• 11:47
  Speaker 2: I my heart hurt when we went to the gas
• 11:50
  Speaker 2: station for two minutes.
• 11:55
  Speaker 1: Yeah, you just but that makes absolute sense. So you
• 11:59
  Speaker 1: don't want to obviously don't want to leave at any point,
• 12:02
  Speaker 1: do you, because for whatever reason. But yeah, no, it's
• 12:05
  Speaker 1: good that you were able to stay in his room
• 12:08
  Speaker 1: with him as well. Yes, that's much excellent to know
• 12:12
  Speaker 1: because then you can you can you can be you know,
• 12:16
  Speaker 1: with him at all times, which is fantastic, right.
• 12:18
  Speaker 2: And they also did include me every morning in rounds.
• 12:22
  Speaker 2: They asked me, me and my wife would like to
• 12:24
  Speaker 2: stand out there and listen to all the doctors talk.
• 12:27
  Speaker 2: So we did that majority of the days, but some
• 12:30
  Speaker 2: days I just sat back because I'm a worry wart,
• 12:32
  Speaker 2: so I asked a thousand and one questions and sometimes
• 12:35
  Speaker 2: I felt like I didn't let them talk or get
• 12:38
  Speaker 2: what they had to say before I jumped in and
• 12:39
  Speaker 2: was like this or this or this, and they're like,
• 12:42
  Speaker 2: calm now, let us let us finish.
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  Speaker 1: So but that's the thing, you especially with it being
• 12:49
  Speaker 1: a condition that you never heard of before, that a
• 12:52
  Speaker 1: lot of families go through this similar situation where they
• 12:56
  Speaker 1: haven't heard of that heard of Hirschbrun's never mind, right, No, well,
• 13:00
  Speaker 1: part of the body, it might affect. You are going
• 13:02
  Speaker 1: to have a million questions, aren't you.
• 13:06
  Speaker 2: Yes, And I feel like the you get answers, and
• 13:09
  Speaker 2: then there's more questions, and then there's more questions to
• 13:12
  Speaker 2: where my surgeon, my son's surgeon sat us down for
• 13:16
  Speaker 2: a good hour and a half two hours kind of like, okay,
• 13:19
  Speaker 2: let me let me dumb it down for you. Okay,
• 13:21
  Speaker 2: this is this is what's going on, this is what
• 13:24
  Speaker 2: is going to happen, this is everything. Here's a paper.
• 13:26
  Speaker 2: I highlighted some stuff too, you know, like he was
• 13:29
  Speaker 2: very understanding with us and helped us a lot.
• 13:32
  Speaker 1: That's really good to hear. That is really good because
• 13:35
  Speaker 1: you can so when people start going into medical terminology
• 13:39
  Speaker 1: and sometimes for doctors and nurses, it's everyday language for them, right, Yeah,
• 13:45
  Speaker 1: they're talking about ganglion sales, they're talking about that and
• 13:49
  Speaker 1: the other, and sometimes they can talk to you about
• 13:53
  Speaker 1: all of this stuff, know, mean what being right the fact? Yeah, yeah,
• 14:00
  Speaker 1: because he's, like you said, it's completely new to you.
• 14:04
  Speaker 1: It's almost Yeah. I don't want to use the phrase
• 14:08
  Speaker 1: dumb down because I think that's right, but it needs
• 14:11
  Speaker 1: to be simplified a little bit, just because it's it's
• 14:14
  Speaker 1: so it's so new and these are completely new terms
• 14:18
  Speaker 1: that we're having to get used to. Yes, but it's yeah,
• 14:23
  Speaker 1: but it's good to know that they went through that
• 14:25
  Speaker 1: with you and we're really good and supportive and and
• 14:29
  Speaker 1: all of that, which is which is fantastic. And this
• 14:31
  Speaker 1: was the large hospital.
• 14:33
  Speaker 2: Yes it was. It's a a one rated hospital.
• 14:39
  Speaker 1: I presume that's a good thing.
• 14:41
  Speaker 2: But it's an amazing hospital. They treat every kind of patience.
• 14:48
  Speaker 1: Yantastic. No, that's that sounds well, A one sounds fantastic,
• 14:52
  Speaker 1: so I presumed it was a good one.
• 14:55
  Speaker 2: Yes, the nick you nurses in the hospital I gave
• 14:59
  Speaker 2: Breakda made a joke saying, don't lose in contact with
• 15:04
  Speaker 2: us after you go to that children's hospital and see
• 15:06
  Speaker 2: how beautiful it is. And I make sure to this
• 15:09
  Speaker 2: day that I still give updates to his nick you
• 15:12
  Speaker 2: nurses at the hospital he was born at and kind
• 15:15
  Speaker 2: of you know, walk them through in.
• 15:17
  Speaker 1: Yes, fantastic. And if I say you right back to
• 15:22
  Speaker 1: the beginning, he said, giving birth in in January, and
• 15:27
  Speaker 1: we are talking about this January just gone January twenty
• 15:30
  Speaker 1: twenty five, So only Oakley is only about eight months
• 15:34
  Speaker 1: or so.
• 15:35
  Speaker 2: He just turned on the first yantastic.
• 15:40
  Speaker 1: So yeah, so you he very He's one of my
• 15:44
  Speaker 1: youngest people to be on the podcast. Big that's fantastic.
• 15:50
  Speaker 1: So thank you so much for doing this as well,
• 15:53
  Speaker 1: because I know welcome right eight eight months after after
• 15:57
  Speaker 1: giving birth.
• 15:58
  Speaker 2: Is I have to I have to be very honest.
• 16:01
  Speaker 2: Watching your other podcast and watching your videos have gave
• 16:04
  Speaker 2: me a lot of strength and a lot of courage
• 16:07
  Speaker 2: to be able to post more and tell his story.
• 16:09
  Speaker 2: And I wanted to share his story that way. Any
• 16:13
  Speaker 2: other moms, or any other family, or anybody that just
• 16:16
  Speaker 2: feels alone with any you know, health condition that their
• 16:19
  Speaker 2: child has, you know, I'm here to lend a hand,
• 16:23
  Speaker 2: to lend a ear, you know, to lend a shoulder,
• 16:25
  Speaker 2: you know, just help the community.
• 16:28
  Speaker 1: That's brilliant because I think there is a way before
• 16:32
  Speaker 1: I got there, a really good hirs Sprung's community online right,
• 16:37
  Speaker 1: and I know there's so interviewed most of them, but
• 16:44
  Speaker 1: it's I think that kind of support is like you said,
• 16:51
  Speaker 1: is so important. I know probably my parents thirty years
• 16:54
  Speaker 1: ago would have benefited from having some kind of whether
• 16:59
  Speaker 1: it be the forums, whether it be the Facebook things,
• 17:02
  Speaker 1: whether it be TikTok, whether it's you know, Instagram, whatever
• 17:07
  Speaker 1: it might be. What else I guess from those sort
• 17:12
  Speaker 1: of tiktoks and into not Instagram to the tiktoks? What
• 17:18
  Speaker 1: else have you found or who else have you found
• 17:21
  Speaker 1: really sort of beneficial? Do you think.
• 17:25
  Speaker 2: I found another mom on there who I do watch?
• 17:29
  Speaker 2: Her son, I want to say, is maybe six or seven,
• 17:32
  Speaker 2: and they are quite in the hospital a lot they Unfortunately,
• 17:37
  Speaker 2: he does have a lot more problems and a lot
• 17:39
  Speaker 2: more issues on. But I always tell her, you know,
• 17:42
  Speaker 2: I'm praying for him, and you know, I tell him.
• 17:46
  Speaker 2: So sometimes I don't want to not necessarily brag, but
• 17:52
  Speaker 2: to tell everybody how much of a success my son has.
• 17:57
  Speaker 2: When I hear other people's stories, you know, it's like
• 18:00
  Speaker 2: a kick in the face, and I personally don't like that.
• 18:03
  Speaker 2: So I'm like, you know, oh, my son has hirshbrungs too,
• 18:07
  Speaker 2: you know. And if they go to my page and
• 18:09
  Speaker 2: watch the video, then they watch it. But I'm not
• 18:12
  Speaker 2: the type of person to be like, oh, well, my
• 18:13
  Speaker 2: son is you know good? You know, I I love
• 18:16
  Speaker 2: hearing all stories. I love children. If I could have them,
• 18:20
  Speaker 2: I would have a ton of them, you know, And
• 18:24
  Speaker 2: so I definitely I'm just now starting to get into
• 18:27
  Speaker 2: more watching more videos. I try to kind of check
• 18:32
  Speaker 2: out who you have on your podcast. That way I can,
• 18:34
  Speaker 2: you know, try to learn a little bit more. But yeah,
• 18:38
  Speaker 2: I'm excited to see how many more others I can meet.
• 18:42
  Speaker 1: That Yeah, I mean, there's there's so many, I mean
• 18:46
  Speaker 1: so many people. I mean, and those are just the
• 18:49
  Speaker 1: people I know, and I know that I'm missing loads
• 18:53
  Speaker 1: and loads and loads of people. So yeah, there is
• 18:56
  Speaker 1: a I think for people who think, oh, well, you know,
• 19:01
  Speaker 1: it's such a rare condition, I won't find many people,
• 19:05
  Speaker 1: or I've got a child with long segment or whatever
• 19:09
  Speaker 1: it may be, you might think I will. Actually I
• 19:11
  Speaker 1: won't find that many people. There are a lot more.
• 19:15
  Speaker 1: I think then maybe people first realize, but I keep
• 19:20
  Speaker 1: your point as well. When you mention because Oakley's doing
• 19:24
  Speaker 1: so well, it's almost harder in a way because you
• 19:31
  Speaker 1: then feel, actually, I do I want to share the
• 19:34
  Speaker 1: success when people are going so well. But I think
• 19:38
  Speaker 1: I'd look at it, yes, slightly the other way. And
• 19:41
  Speaker 1: actually the more success stories we share, possibly the more
• 19:46
  Speaker 1: I know everybody's different and you know, we're never going
• 19:50
  Speaker 1: to say this is how this is going to happen
• 19:52
  Speaker 1: or whatever. But the more success stories we share, the better.
• 19:58
  Speaker 1: I think that does give of a lot of hope
• 20:01
  Speaker 1: to people, because I think sometimes when I read a
• 20:05
  Speaker 1: lot of stories, you know, people who message me and whatnot,
• 20:09
  Speaker 1: and I do hear lots of things that maybe don't
• 20:13
  Speaker 1: go so well, or maybe people are struggling with this,
• 20:16
  Speaker 1: that and the other. Sometimes to hear that things are
• 20:22
  Speaker 1: going really well, right, I think is a positive.
• 20:27
  Speaker 2: Yes, very much. It's amazing to hear anybody's story, and
• 20:33
  Speaker 2: to hear you know, anybody, you know, I just I
• 20:37
  Speaker 2: love hearing any kind of stories. I'm on the whole
• 20:39
  Speaker 2: medicalse side of TikTok, so I hear all the stories
• 20:42
  Speaker 2: about all these you know, health conditions, and it melts
• 20:45
  Speaker 2: my heart.
• 20:47
  Speaker 1: Yeah, yeah, it's but I think it's Yeah, it's one
• 20:50
  Speaker 1: of those where because there's so I mean, there's so
• 20:55
  Speaker 1: many different varieties of Hirshprung's and then all of those
• 20:58
  Speaker 1: varieties come with their own potential other conditions as well
• 21:05
  Speaker 1: that are associated with Heirsprung's, and everybody's completely different that
• 21:10
  Speaker 1: sometimes just hearing actually things are going quite well. Yes,
• 21:17
  Speaker 1: it is really nice. And I know I've been I've
• 21:21
  Speaker 1: been getting messages from people who want these kind of
• 21:24
  Speaker 1: episodes that we're doing today where it's there's not it's
• 21:28
  Speaker 1: not so much drama involved potentially, and it is very
• 21:33
  Speaker 1: much a case of yeah, this happened at the beginning,
• 21:37
  Speaker 1: but actually, you know, eight months yeah, and things are
• 21:44
  Speaker 1: going well. So just sort of on that point, I guess,
• 21:47
  Speaker 1: how how is Oakly now?
• 21:49
  Speaker 2: So? Oakley is doing amazing. His surgeries have healed completely,
• 21:54
  Speaker 2: or I mean, I'm sorry, his decisions have healed completely.
• 21:59
  Speaker 2: We do not have to do no more irrigations nor dilations.
• 22:04
  Speaker 2: So he is kind to his surgeon said, just let
• 22:07
  Speaker 2: him go. You know, even if he goes to the
• 22:09
  Speaker 2: bathroom one time, two times, you know, three times, it's
• 22:12
  Speaker 2: good as long as it's milky. His stomach is always
• 22:17
  Speaker 2: very soft. Okay, I know, come.
• 22:19
  Speaker 1: Do you want to come and say hello? Come on
• 22:20
  Speaker 1: in for audio listeners. Oak Lea's just enjoyed this.
• 22:26
  Speaker 2: So he is doing amazing. The only thing that was
• 22:32
  Speaker 2: a big trouble for us after is that he had
• 22:35
  Speaker 2: skin tags from the surgery, so it took a while
• 22:40
  Speaker 2: for them to go away. We're still using the special
• 22:44
  Speaker 2: cream that we used when he did have surgery, so
• 22:47
  Speaker 2: those are just little minute things that we still have
• 22:50
  Speaker 2: to do. But he's doing amazing.
• 22:54
  Speaker 1: Really. That's so so good to hear, because, like you said,
• 22:59
  Speaker 1: you with surgeries and whatnot, obviously there's all manner of
• 23:05
  Speaker 1: things to think about and what have you. But great
• 23:08
  Speaker 1: to hear that he's doing so so well. And I
• 23:14
  Speaker 1: think you mentioned that Pull three was around two months old.
• 23:17
  Speaker 2: Was that right? Yes, it was March twenty seven, so
• 23:22
  Speaker 2: he was almost three months old. Almost three months No,
• 23:25
  Speaker 2: oh no, I'm sorry almost two months?
• 23:27
  Speaker 1: Yes, almost, yes, January to March. Sorry, bye, bad, it's
• 23:30
  Speaker 1: late here.
• 23:31
  Speaker 2: Okay, it wasn't even the time has gone by so fast.
• 23:34
  Speaker 3: These months have flu And I I told my wife
• 23:39
  Speaker 3: the other day, I'm like, okay, hold on, I got
• 23:41
  Speaker 3: to tell you his story again and make sure I
• 23:42
  Speaker 3: remember everything that happened and make sure I'm saying everything right.
• 23:47
  Speaker 2: And there's a couple of times where she was like,
• 23:49
  Speaker 2: hold on, this is what it's called. And I'm like,
• 23:52
  Speaker 2: this is why this is why I needed you. Thank you.
• 23:54
  Speaker 1: Yeah, yeah, because I imagine again when you're I guess kind
• 23:59
  Speaker 1: of back to the nick as well. When you're in
• 24:02
  Speaker 1: the thick of it, right and you're talking to doctors
• 24:08
  Speaker 1: and you know you're spending lots of time in the nick,
• 24:11
  Speaker 1: you I guess all of it. There were certainly when
• 24:16
  Speaker 1: I've spoken to other people, all of it kind of
• 24:18
  Speaker 1: melds into one great, big blur. Was it similar for you?
• 24:25
  Speaker 2: It was? It was? It was definitely a lot. It
• 24:29
  Speaker 2: was a rush of emotions, rush of feelings. It was
• 24:35
  Speaker 2: very confusing, like, oh my goodness, you know, is there
• 24:38
  Speaker 2: is this something that I could have prevented, you know,
• 24:41
  Speaker 2: being pregnant? You know, is there anything I could have done?
• 24:44
  Speaker 2: And every surgeon has says no, ma'am. She said, no
• 24:48
  Speaker 2: matter how many testsing you could have taken, you would
• 24:53
  Speaker 2: have we would have never been able to tell you
• 24:55
  Speaker 2: that he had this health condition from being in the womb.
• 24:59
  Speaker 1: That though, and I get that again from from plenty
• 25:02
  Speaker 1: of parents who say, are could I have done this?
• 25:06
  Speaker 1: Did I eat the wrong thing? Did I know it?
• 25:10
  Speaker 2: From?
• 25:11
  Speaker 1: Like you said, with every surgeon you've spoken to, certainly
• 25:14
  Speaker 1: every surgeon I've spoken to, it is just pot luck, right,
• 25:20
  Speaker 1: That's it. And that's and that's so difficult sometimes to
• 25:25
  Speaker 1: rationalize because I guess as humans, we want to rationalize things, yes, yes,
• 25:34
  Speaker 1: and we kind of want to say, well, this happened,
• 25:36
  Speaker 1: because this happened, and it's it's really really difficult sometimes
• 25:41
  Speaker 1: just go nah, nothing we can do.
• 25:45
  Speaker 2: Right, And that was another thing that kind of accept
• 25:49
  Speaker 2: upset in me is that there was nothing that me
• 25:52
  Speaker 2: or my wife could do for him, why he was
• 25:54
  Speaker 2: in the hospital, or why they were running this chest
• 25:57
  Speaker 2: you know, they you know, with the feeding tube down
• 26:02
  Speaker 2: his throat and all these surgeons coming in and out,
• 26:05
  Speaker 2: and you know, test getting done on him, and you know,
• 26:08
  Speaker 2: him being only a couple of days old. You know,
• 26:10
  Speaker 2: was a lot for both of us, you.
• 26:12
  Speaker 1: Know, Yeah, I can imagine that was, Yes, a heck
• 26:18
  Speaker 1: of a lot. Especially is fifteen days prior, or a
• 26:23
  Speaker 1: few days of weeks prior, you'd never heard of this condition,
• 26:27
  Speaker 1: and then suddenly you have to become almost experts in it, I.
• 26:30
  Speaker 2: Guess, right right on, yes, So, and that's that's.
• 26:35
  Speaker 1: The one thing I well, several things, but one thing
• 26:38
  Speaker 1: in particular that I do really admire about parents of
• 26:44
  Speaker 1: children with hirsprungs is the amount that you have to
• 26:47
  Speaker 1: take on in such a short space of time. I mean,
• 26:51
  Speaker 1: you have no time to think, no time to kind
• 26:54
  Speaker 1: of process anything. It's right, right, these things that I
• 26:58
  Speaker 1: never knew existed before, like violations and wash outs and
• 27:04
  Speaker 1: ganglion cells and straits, like biopos, all of these, all
• 27:09
  Speaker 1: of these terms and all of these things that you
• 27:12
  Speaker 1: didn't know existed a few weeks ago. Suddenly you become
• 27:15
  Speaker 1: an expert in it.
• 27:17
  Speaker 2: Right. When they ended up taking a piece of his
• 27:20
  Speaker 2: calling out to watch it, they, like I said, they
• 27:24
  Speaker 2: use medical terms. And then after they did it, they
• 27:27
  Speaker 2: kind of sat us down and was like, Okay, this
• 27:29
  Speaker 2: is what we did.
• 27:30
  Speaker 1: Yeah, you know, yes, wow, so that is yeah. And
• 27:35
  Speaker 1: then you have to.
• 27:38
  Speaker 2: Like, right, you have to be like okay, well any
• 27:42
  Speaker 2: answers and they're like no, it's going to be a
• 27:44
  Speaker 2: couple of days. And then every day you're like okay, anything, anything, anything,
• 27:48
  Speaker 2: and then they're like no, we'll come in and your
• 27:50
  Speaker 2: anxiety and your heart and you know, you just get
• 27:53
  Speaker 2: that nauseous feeling in your stomach like, oh my goodness,
• 27:56
  Speaker 2: could it be you know short? Could it be long?
• 27:59
  Speaker 2: Like you know, did you no answer?
• 28:02
  Speaker 1: Just waiting no, exactly exactly, And there's and that's not
• 28:07
  Speaker 1: like a doctor fall and it's just one of those
• 28:09
  Speaker 1: things you just have to It's just it's just a
• 28:12
  Speaker 1: waiting game. Unfortunately, sometimes, especially with things like biopsies. And
• 28:18
  Speaker 1: in that time, did you sort of google stuff and
• 28:22
  Speaker 1: try and find out more? Because I know some people
• 28:24
  Speaker 1: are like, no, I don't want to google anything, and
• 28:27
  Speaker 1: some people like, we want to know everything.
• 28:29
  Speaker 2: Yes. I did a lot of research myself. I had
• 28:33
  Speaker 2: a notebook that I kind of jotted everything down. I
• 28:35
  Speaker 2: looked at a lot of images and I'm not gonna
• 28:41
  Speaker 2: lie google ing, googling. It was very scary. It was
• 28:44
  Speaker 2: the things that sometimes it tells you or the pictures
• 28:47
  Speaker 2: that it shows you. You know, it is very fearful.
• 28:50
  Speaker 2: So you know, like my surgeon, he always tells me, Lessen,
• 28:53
  Speaker 2: you can't listen to everything that has Google. You know,
• 28:57
  Speaker 2: read it, jot it down. Any question do you you do?
• 29:00
  Speaker 2: Have you come to me, You ask me and I
• 29:02
  Speaker 2: will tell you true or false. So that's what I did.
• 29:05
  Speaker 2: And every couple visits he had after his surgery, I
• 29:09
  Speaker 2: would say it became it was every either month or
• 29:14
  Speaker 2: two months that we had to go back and see
• 29:16
  Speaker 2: him to do monthly checkups on him, and I would
• 29:22
  Speaker 2: write down all my questions or all the things I
• 29:24
  Speaker 2: read and I would take it to them and I
• 29:26
  Speaker 2: would show them, you know, and I'll be like, hey,
• 29:29
  Speaker 2: this is you know, my question, this is my question.
• 29:31
  Speaker 2: You know is this true? And you don't know how
• 29:33
  Speaker 2: many times he told me, no, just just just log
• 29:36
  Speaker 2: off of Google. Log off. He's like, let me send
• 29:42
  Speaker 2: you home a packet and you read through that packet
• 29:44
  Speaker 2: and you highlight everything and do your little notes and
• 29:47
  Speaker 2: all that on the packet, and that's all the true
• 29:50
  Speaker 2: information that you know you need.
• 29:52
  Speaker 1: Yeah, yeah, definitely.
• 29:55
  Speaker 2: To this day, he still explains the hirshprungs entercolitis to us.
• 30:00
  Speaker 2: They were very on top of us about that, you know,
• 30:02
  Speaker 2: because we are young, and they you know, didn't want
• 30:08
  Speaker 2: us to not know what to do or get stuck
• 30:11
  Speaker 2: in that situation and that, you know, they were like,
• 30:13
  Speaker 2: here's my number, you know, here's my card, you know,
• 30:16
  Speaker 2: like I'm going to make sure I call you in
• 30:20
  Speaker 2: I would say, maybe three months four months of him
• 30:23
  Speaker 2: being home after surgery, they did give us a call
• 30:26
  Speaker 2: and asked how he was doing. And then here recently
• 30:30
  Speaker 2: they sent a card with like seven eight nurses that
• 30:35
  Speaker 2: signed for him of the nick You team and you
• 30:38
  Speaker 2: know her that he was doing amazing and that he
• 30:42
  Speaker 2: will be going to the hospital tomorrow for a circumcision surgery.
• 30:47
  Speaker 2: So they all can't wait to see him. And it's
• 30:50
  Speaker 2: just the love is so you know, so unconditional and
• 30:53
  Speaker 2: so real, and it helps you a lot.
• 30:56
  Speaker 1: Yeah, I could imagine that that really helps that. I mean,
• 30:59
  Speaker 1: they took the time, they took the time to do that,
• 31:02
  Speaker 1: because obviously we all know that nurses and doctors really
• 31:05
  Speaker 1: care about the patient and whatnot. But the fact they
• 31:09
  Speaker 1: took time to call and send the card, and that's
• 31:13
  Speaker 1: that's really really good to hear, really good.
• 31:16
  Speaker 2: The one the one thing I can definitely say is
• 31:21
  Speaker 2: build you a support team, build you a support system.
• 31:25
  Speaker 2: Have a support system. Don't you know, want to keep
• 31:28
  Speaker 2: everything bottled in and not explain nobody how you feel
• 31:32
  Speaker 2: about this. A support system. It's a number one key,
• 31:37
  Speaker 2: you know, for parents that have children with this health condition.
• 31:40
  Speaker 1: Yeah, yeah, I think again, having spoken to several parents
• 31:46
  Speaker 1: as well, they do believe that's really really important. And
• 31:49
  Speaker 1: I know it's kind of I sort I say, it's
• 31:53
  Speaker 1: sort of easy to think about. Actually a support system
• 31:56
  Speaker 1: would be good. I think we all know that it
• 31:58
  Speaker 1: would but it's sometimes not as easy to open up,
• 32:02
  Speaker 1: I guess, and everybody's different, some people really really strong.
• 32:09
  Speaker 1: I know you said at the beginning you found it
• 32:10
  Speaker 1: very difficult to write his Oakley story down, And that
• 32:15
  Speaker 1: makes absolute sense because it is and I don't use
• 32:19
  Speaker 1: this word likely and I know it's often overused, but
• 32:21
  Speaker 1: a traumatic time. It is a traumatic time. Understandably, you're
• 32:27
  Speaker 1: going through all manner of things that you didn't know
• 32:30
  Speaker 1: existed beforehand, and now you have to know all of
• 32:34
  Speaker 1: these things, and it's an incredibly it's a bit of
• 32:39
  Speaker 1: a whirlwind. I guess.
• 32:41
  Speaker 2: Yes, it can work you up, and many emotions and
• 32:46
  Speaker 2: you know, already having a baby and dealing with postpartum
• 32:50
  Speaker 2: depression and really going through it. It's really good to
• 32:55
  Speaker 2: be able to open up, whether it is a partner,
• 32:59
  Speaker 2: whether it is a nurse in the nicku the nurses.
• 33:03
  Speaker 2: I was talking to my other friend, she's a mom
• 33:06
  Speaker 2: as well, and I told her, I said, you know,
• 33:09
  Speaker 2: you cannot find one nurse to just let all your
• 33:12
  Speaker 2: anger out on because you're just have so many built
• 33:15
  Speaker 2: up emotions and they're so sweet and so loving for
• 33:17
  Speaker 2: your child and come running if they hear a peek
• 33:20
  Speaker 2: from them that you can't find no one to get
• 33:24
  Speaker 2: mad at, and you can't you know, explode on anyone.
• 33:26
  Speaker 2: And I think that's why walking helped a lot too.
• 33:29
  Speaker 2: You know, I could go outside and I could scream,
• 33:31
  Speaker 2: or I could tap my foot, you know, one hundred times,
• 33:34
  Speaker 2: or you know, I can just look on my phone
• 33:36
  Speaker 2: and cry, you know, So it was a lot of
• 33:39
  Speaker 2: advantages to that.
• 33:41
  Speaker 1: Yeah, most definitely, I think walks are underrated, massively underrated,
• 33:47
  Speaker 1: but it is. But sometimes and again everybody's different, But
• 33:51
  Speaker 1: I think having that mechanism of release is because there
• 33:58
  Speaker 1: are going to be a lot of emotions, whether it's relief,
• 34:04
  Speaker 1: whether it's anger, whether it's right, yeah, and everything in between.
• 34:09
  Speaker 1: I mean from I guess from my own experience as well,
• 34:13
  Speaker 1: you kind of think, well, why me, you know what,
• 34:15
  Speaker 1: Why why am I the one in five thousand? Why
• 34:18
  Speaker 1: not the other four thousand, nine hundred and ninety died, right,
• 34:22
  Speaker 1: So there's that emotion that there's that to think about,
• 34:25
  Speaker 1: and there's but then there's the sort of relief of going, well,
• 34:27
  Speaker 1: actually I'm all right, you know, I'm okay. But it's
• 34:31
  Speaker 1: and I imagine you went through those as a parent. Definitely, right, Yes, yeah, it.
• 34:42
  Speaker 2: I think the main thing that kind of broke me
• 34:45
  Speaker 2: in the beginning when I did find out about this disease,
• 34:48
  Speaker 2: that there was no cure, that he was going to
• 34:52
  Speaker 2: have it or you know, the rest of his life.
• 34:55
  Speaker 2: And it could be something simple, or it could be
• 34:57
  Speaker 2: something you know, dramatic him, you know, it's all and
• 35:01
  Speaker 2: how you tell him the story and how you sit
• 35:05
  Speaker 2: down and you tell him and you you know, when
• 35:07
  Speaker 2: he gets you know, he pretty much he explained to me, Okay,
• 35:10
  Speaker 2: when he goes through potty training stage and he gets
• 35:13
  Speaker 2: you know, constipated, and he has sunny problems, and you know,
• 35:16
  Speaker 2: he has issues. You know, there's always you know, you
• 35:20
  Speaker 2: can always rely on medication to help, you know, suppositories,
• 35:25
  Speaker 2: things like that, you know. And that's something that while
• 35:27
  Speaker 2: I didn't think of, you know, I thought, oh, bam, surgery,
• 35:30
  Speaker 2: you know, bam, it goes away, you know, and yeah,
• 35:34
  Speaker 2: it it it. But you know what, it doesn't make
• 35:37
  Speaker 2: me love him any less, makes me love him even more,
• 35:40
  Speaker 2: you know, like it makes me really be on top
• 35:43
  Speaker 2: of it. You know, I'm gonna stay at home mom
• 35:44
  Speaker 2: due to the fact that I don't want to put
• 35:48
  Speaker 2: his health in his condition in another person's hand that
• 35:52
  Speaker 2: is not educated. You know, I don't want to put
• 35:56
  Speaker 2: him in a daycare and something happens and they're not
• 35:59
  Speaker 2: for familiar, you know, with what he has, or when
• 36:03
  Speaker 2: we go to a pediatrician and I have to explain
• 36:06
  Speaker 2: to a new pediatrician about it. You know it. You know,
• 36:09
  Speaker 2: it's something that I believe that everybody should be educated on,
• 36:13
  Speaker 2: and you know, everybody should, you know, I believe that
• 36:17
  Speaker 2: everyone a couple of years should take classes on like
• 36:19
  Speaker 2: medical conditions and you know, health conditions because you never know,
• 36:23
  Speaker 2: you could see a you know, baby in the public,
• 36:26
  Speaker 2: you know, struggling and a mom not knowing you know,
• 36:29
  Speaker 2: you help, you know, be.
• 36:32
  Speaker 1: Great, it'd be great if we all knew about everything.
• 36:34
  Speaker 2: That would be.
• 36:34
  Speaker 1: One It would definitely. But no, I think you're absolutely
• 36:38
  Speaker 1: right there with what you say, Absolutely right. I think
• 36:42
  Speaker 1: it's it is a tricky one. It is a tricky
• 36:46
  Speaker 1: one to navigate. And again when it comes to hirshprungs,
• 36:51
  Speaker 1: and when doctors talk about all sorts of things with you,
• 36:56
  Speaker 1: they can often not necessarily talk in definites just because
• 37:00
  Speaker 1: they can't because it is so much of a varied condition.
• 37:03
  Speaker 1: So I guess it is a little bit of trial
• 37:07
  Speaker 1: and error and kind of see how you go.
• 37:10
  Speaker 2: Right.
• 37:10
  Speaker 1: Have you found that as well?
• 37:13
  Speaker 2: He is eating solids as of now. I did do
• 37:17
  Speaker 2: my research about what foods to give him and what
• 37:21
  Speaker 2: foods will not be good for him. So we've been
• 37:24
  Speaker 2: kind of going on a list of what's good with
• 37:25
  Speaker 2: his Hirschbrung's disease, and he's been doing amazing. He's been
• 37:29
  Speaker 2: taking the food really good. Sometimes his stomach will hurt,
• 37:33
  Speaker 2: you know, he'll he'll cramp, you know, I can tell
• 37:36
  Speaker 2: in his face, and we'll do just exercises and you know,
• 37:39
  Speaker 2: if I have any major questions, I will send an
• 37:43
  Speaker 2: email out to his surgeon, and his surgeon will kind
• 37:45
  Speaker 2: of walk me through of you know, what to do
• 37:47
  Speaker 2: or you know, like how to relax and calm down
• 37:50
  Speaker 2: and see if it's this or if it's this. You know,
• 37:52
  Speaker 2: they're very they communicate very well with you.
• 37:56
  Speaker 1: That's really good to hear, really really good to hear,
• 38:00
  Speaker 1: just as we I guess, come towards the end of this,
• 38:03
  Speaker 1: I know I've asked a little bit about how Oakley
• 38:05
  Speaker 1: is now and how he's getting on, and really really
• 38:08
  Speaker 1: good to hear that he's he's doing so well, So
• 38:12
  Speaker 1: I guess I'll go a little bit further forward than
• 38:15
  Speaker 1: that and ask a little bit more. I know, Hirshbrung's
• 38:19
  Speaker 1: in future is a little bit of a difficult subject
• 38:22
  Speaker 1: because sometimes we don't really know, you know, what's around
• 38:25
  Speaker 1: the corner. But what do you hope for Oakley's future?
• 38:31
  Speaker 2: Oh, there's so many things. I hope and as far
• 38:34
  Speaker 2: on it, I just hope that he continues to do amazing,
• 38:41
  Speaker 2: you know, with his condition. And I hope that when
• 38:44
  Speaker 2: he gets older, I'm able to sit him down and
• 38:48
  Speaker 2: be able to talk with him and explain to him,
• 38:51
  Speaker 2: you know that this was not your fault. You know.
• 38:54
  Speaker 1: It's just.
• 38:56
  Speaker 2: That things can happen very unexpectedly, you know. And I
• 39:01
  Speaker 2: just I hope. I hope he lives long.
• 39:05
  Speaker 1: Yeah, yeah, Well we could play play him this, play
• 39:08
  Speaker 1: back this podcast when he's old enough too.
• 39:12
  Speaker 2: I told my mom she came down here a few
• 39:14
  Speaker 2: weeks ago to see him, because you know, it's I
• 39:17
  Speaker 2: don't want to risk traveling. A lot of my family
• 39:19
  Speaker 2: lives states away, so due to his health condition, I
• 39:23
  Speaker 2: don't really like traveling if I don't have to, you know,
• 39:27
  Speaker 2: just because his surgeon is here and just in case
• 39:32
  Speaker 2: I have to rush into the hospital, I'm right at home.
• 39:35
  Speaker 2: And you know, I told my mom, I'm like, you know,
• 39:37
  Speaker 2: I can't wait till he gets married and he gets
• 39:40
  Speaker 2: you know, meets a lady and I get to sit
• 39:42
  Speaker 2: down with her and explain all the things I did
• 39:44
  Speaker 2: to him, you know, when he was a little baby,
• 39:47
  Speaker 2: to help him with you know, this health condition, and
• 39:50
  Speaker 2: you know, I can't wait.
• 39:51
  Speaker 1: Oh that's so so good to hear. But no, thank
• 39:54
  Speaker 1: you so much for coming on. And I know it
• 39:57
  Speaker 1: goes without saying, but I'll say it anyway that I
• 39:59
  Speaker 1: will both you and your wife and Oakley, they're all
• 40:03
  Speaker 1: the very, very best. But whatever is to.
• 40:06
  Speaker 2: Come in the future, Yes, I really appreciate it, and
• 40:10
  Speaker 2: I hope a couple of years from now we can
• 40:12
  Speaker 2: be right back here doing it again.
• 40:14
  Speaker 1: Absolutely, we'd love to have you to return. Absolutely, thank
• 40:17
  Speaker 1: you so much for coming on.
• 40:19
  Speaker 2: Yes, thank you so much.