Latest / Tom's Hirschsprung's Podcast / Episode 82 - With Amy Parker (Part 2)

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Episode 82 - With Amy Parker (Part 2) · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirshprungs Podcast, a space where
• 0:05
  Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
• 0:09
  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.
• 0:15
  Speaker 1: Each episode we will explore real stories and honest conversations
• 0:19
  Speaker 1: about a condition that often goes unheard. Thank you for
• 0:22
  Speaker 1: tuning in.
• 0:43
  Speaker 2: And I could see my husband like as well, Oh
• 0:48
  Speaker 2: we weren't bothered by the storm man. We knew what
• 0:50
  Speaker 2: the storm would look like. Yeah, all right, we google
• 0:53
  Speaker 2: that with YouTube that and then we were like, hey,
• 1:00
  Speaker 2: thing in my mind again, I was like, oh, maybe
• 1:02
  Speaker 2: they went into the them, you know, like maybe that
• 1:04
  Speaker 2: was that. But they told us they were making a decision.
• 1:07
  Speaker 2: But I just didn't just didn't click, you know, because
• 1:11
  Speaker 2: it was just so much information and there was no
• 1:12
  Speaker 2: one's really talk us through it. And when you're a doctor,
• 1:15
  Speaker 2: all these things daily stuff, you don't think of it
• 1:18
  Speaker 2: being big things, right, And I remember the doctor actually
• 1:21
  Speaker 2: apologized to us at one point and she said, you know,
• 1:23
  Speaker 2: I've thrown so many words and things that you're with it.
• 1:26
  Speaker 2: Sometimes I need to step back and think these people
• 1:28
  Speaker 2: don't know what's going on.
• 1:30
  Speaker 3: Yeah, you know, it's it's your first time it's there.
• 1:35
  Speaker 2: However many rests in thousands, god knows right exactly. Yeah,
• 1:40
  Speaker 2: So that was one thing that really did throw us.
• 1:43
  Speaker 2: The thing I was just about to talk about was
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  Speaker 2: in the UK you have stormer nurses, right, you have
• 1:48
  Speaker 2: units that you can go to and get check ups
• 1:51
  Speaker 2: and you get all of your stormer supplies. You don't
• 1:56
  Speaker 2: get that in Zambia. It is no such thing as
• 1:59
  Speaker 2: a storm on it. Yes, there's nurses with that have
• 2:04
  Speaker 2: seen stawmus. There's nurses know what a stormer is. There's
• 2:09
  Speaker 2: surgeons that put a stormer in but don't know have
• 2:11
  Speaker 2: decay for it. Okay, surgically they can do it, yeah,
• 2:16
  Speaker 2: but nurse and care nothing.
• 2:20
  Speaker 3: It's quite distracted then mm hmm.
• 2:25
  Speaker 2: And the surgeon that we use, she actually has her
• 2:29
  Speaker 2: own private clinic as well, like piatic clinic, and she's
• 2:32
  Speaker 2: trying to set up like in home case service or
• 2:36
  Speaker 2: like an after surgery case service obviously paid for and
• 2:42
  Speaker 2: try and get that app you know, like elderly care service,
• 2:45
  Speaker 2: you know that type of thing. Just a bit of
• 2:48
  Speaker 2: hospice k at home respite and know all that sort
• 2:50
  Speaker 2: of stuff. We don't have that in Zambia unless you're
• 2:55
  Speaker 2: going to pay your private nurse to do it. So
• 2:56
  Speaker 2: she's trying to set up something that's more affordable and
• 3:00
  Speaker 2: available and accessible. So through this I said to our like,
• 3:05
  Speaker 2: you know, is there someone we can have to help us?
• 3:08
  Speaker 2: So my parents were very generous with us, and I
• 3:11
  Speaker 2: suppose it was for them to feel like they were
• 3:12
  Speaker 2: helping in some sort of way as well from being
• 3:15
  Speaker 2: so far away. And they said, we've come down it
• 3:17
  Speaker 2: we comes down me and I what for? You're not
• 3:20
  Speaker 2: store my nurses? Like it's it's not going to do
• 3:24
  Speaker 2: anything you be in here other than you like physically
• 3:26
  Speaker 2: being here, because emotionally you can be on the phone
• 3:29
  Speaker 2: or you can be there, right unless isn't that you're
• 3:33
  Speaker 2: being physically here, There's going to be no difference. So
• 3:37
  Speaker 2: like it's okay. And we came to that decision between
• 3:40
  Speaker 2: us and we're like, it's fine. But they paid for
• 3:44
  Speaker 2: us to have twenty four seven nursing care for a month.
• 3:47
  Speaker 2: Why do you want to have a guess how much
• 3:52
  Speaker 2: that was.
• 3:54
  Speaker 1: I couldn't even think of a feuar off the top
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  Speaker 1: of my head.
• 3:58
  Speaker 2: It was about five hundred great for a month twenty
• 4:03
  Speaker 2: four to seven nursing care. Wow, that was two nurses
• 4:09
  Speaker 2: on shift twelve hours and twelve hours off at our house.
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  Speaker 3: Wow.
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  Speaker 2: Yeah, if only it was as good as that.
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  Speaker 3: Yeah.
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  Speaker 2: As the problem was, we had some nurses that had
• 4:25
  Speaker 2: stormer exposure but weren't equipped care. But in those first
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  Speaker 2: few days when we were still in the hospital, it
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  Speaker 2: really helped to have someone there to interpret medica lingo yes, right,
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  Speaker 2: So it helped in that way. It also helped us
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  Speaker 2: emotionally to be like, oh, there's somebody here. If she's
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  Speaker 2: got a temperature, that nurse can tell me, oh, no,
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  Speaker 2: it's okay, it's just this, or let's wait and check
• 4:56
  Speaker 2: again in an hour, or you know those types of
• 4:58
  Speaker 2: things where you're like, oh, my gosh, had sage, she's
• 5:00
  Speaker 2: got a fever. Clearly she got an affection, right. It
• 5:04
  Speaker 2: really helped with that sort of stuff. But unfortunately the
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  Speaker 2: stormer bag wasn't cut to the right size by someone,
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  Speaker 2: and then she had extreme excoriation, and I mean extreme
• 5:18
  Speaker 2: to the point we couldn't put a bag on her.
• 5:21
  Speaker 2: She had We were just using either vasiline or Souda cream,
• 5:28
  Speaker 2: which was the only thing available to us with gauze
• 5:33
  Speaker 2: and then a nappy around a waste, yeah, tipped, and
• 5:40
  Speaker 2: then her diaper on top of that. They can not
• 5:42
  Speaker 2: be on top of that. So if sometimes say diaper,
• 5:44
  Speaker 2: sometimes say nappy talking to a Brit nappy on top of.
• 5:46
  Speaker 3: That, we know what you made, it's all right, yeah.
• 5:49
  Speaker 2: On top of that as well, So no, that's not comfortable.
• 5:53
  Speaker 1: Yeah.
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  Speaker 2: And then because of that excoriation, the minute that stormer
• 5:57
  Speaker 2: is active, you have to change. You have to wipe,
• 6:01
  Speaker 2: but you have to clean, you have to change it.
• 6:03
  Speaker 2: She also had an illios to me, so it was
• 6:08
  Speaker 2: diarrhea all the time basically, right, you have people with
• 6:12
  Speaker 2: coast to bags that drain their bag or even drain real. Yes,
• 6:18
  Speaker 2: it was because it's more solid, right, once a day.
• 6:24
  Speaker 2: We would drain in her bag around ten to twelve
• 6:26
  Speaker 2: times a day on a good day. Yeah, because we're
• 6:31
  Speaker 2: trying to get as much in there as possible, because
• 6:33
  Speaker 2: with a hypher output storm you need to begin making
• 6:38
  Speaker 2: sure she got fluid in there, and this and that
• 6:39
  Speaker 2: and what and everything else. Right, So we went three
• 6:43
  Speaker 2: weeks without a bag, but it just kept getting worse
• 6:48
  Speaker 2: and worse and worse. The vas leane wasn't working. The
• 6:50
  Speaker 2: pseudo cream wasn't working, she wasn't eating as much. She
• 6:53
  Speaker 2: was in herself. And then I don't either say fortunately
• 6:58
  Speaker 2: or unfortunately. I have a friend who was son was
• 7:01
  Speaker 2: born without a rectum in Dambian. I didn't even know
• 7:07
  Speaker 2: he had a glosthromyth all right, Hill. People knew that
• 7:13
  Speaker 2: because I always talked about, oh, she hasn't had a
• 7:15
  Speaker 2: pool shot a pool pool at the pool and then
• 7:18
  Speaker 2: so people knew like, okay, has is she better now?
• 7:21
  Speaker 2: Is she better now? You know? So they knew everything
• 7:23
  Speaker 2: we would going through it. And we used to go
• 7:25
  Speaker 2: to a playgroup and in that playgroup, the leader that
• 7:27
  Speaker 2: did the playgroup, it was her sister in law. So
• 7:29
  Speaker 2: it was her nephew. What small world. Yeah, And she
• 7:35
  Speaker 2: came to the rescue, and when I mean rescue to
• 7:37
  Speaker 2: this day, I would not have survived this journey without her. Luckily,
• 7:41
  Speaker 2: now her son has also had a reverse saling and
• 7:43
  Speaker 2: is living his best life. And he's got a baby
• 7:45
  Speaker 2: brother who has no complications and was born pay effect.
• 7:50
  Speaker 2: And he actually had his surgery a grade Ormond Street,
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  Speaker 2: Ah the best hospital in my opinion, right, and they
• 7:57
  Speaker 2: paid for it, and they had some insurance cover it.
• 8:00
  Speaker 2: Sam paid for it. They're actually South African living in Zambia,
• 8:02
  Speaker 2: or the dad is Zambian, lived in Zambia. The mom
• 8:06
  Speaker 2: is South African, lives in Zambia. The baby is South African.
• 8:10
  Speaker 2: But he's actually in a British passport because he grew
• 8:12
  Speaker 2: up in the UK and his mom and dad and
• 8:14
  Speaker 2: you that's all crazy as well. But good news on
• 8:17
  Speaker 2: that is he's had a reverse and he's living his
• 8:19
  Speaker 2: best life and he's her little brother with no problems
• 8:21
  Speaker 2: and everything is fine. But fortunately for me, I had
• 8:25
  Speaker 2: her as a life line and even through it, like
• 8:30
  Speaker 2: she'd cry to me over stuff with her son. And
• 8:33
  Speaker 2: you know, it's one of those things where a bag
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  Speaker 2: is working for you and then suddenly it's not our
• 8:38
  Speaker 2: brand is working. Then suddenly it's not the strips he
• 8:41
  Speaker 2: using on top. Awaken, Now they're causing a rash. All
• 8:45
  Speaker 2: of those things. Only we could relate on those things, right,
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  Speaker 2: But she came to the rescue. She's also a pharmacist
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  Speaker 2: by trade, so she also had some medical linguo, right,
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  Speaker 2: she knew a lot of things. I trusted her more
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  Speaker 2: than I would have trusted anybody else with a stormer
• 9:03
  Speaker 2: at that point because she had the medical knowledge as
• 9:06
  Speaker 2: well of certain things. So she was telling me, tried
• 9:08
  Speaker 2: this type of cream and tried that type of cream.
• 9:10
  Speaker 2: And then she said, look, I'm going to South. Let
• 9:13
  Speaker 2: me try and bring some stuff back for you. But
• 9:16
  Speaker 2: she was going to be out for like three weeks
• 9:17
  Speaker 2: and not even sending stuff from South. You have to
• 9:20
  Speaker 2: pay for it. It has to take a few days
• 9:21
  Speaker 2: to come. We are to deal with stuff there and
• 9:24
  Speaker 2: then you know. So she brought some of the things
• 9:27
  Speaker 2: she was using on hers and she said, look again,
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  Speaker 2: storm my life. This might work on him and it might
• 9:32
  Speaker 2: not work on her. Yes, But she also told us
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  Speaker 2: about an NGO and nonprofit organization, non government organization, nonprofit
• 9:44
  Speaker 2: charity basically in Zambia called Stormer Care Support. So this guy,
• 9:51
  Speaker 2: a Zambian guy, had a colost to me and he
• 9:58
  Speaker 2: was forty and they're not tourshbugs. Really did. I've forgotten
• 10:02
  Speaker 2: where it was with him now, but he had some
• 10:03
  Speaker 2: sort of bowel obstruction or twisted something. Anyway, I had
• 10:09
  Speaker 2: no idea what a storma was and was told you're
• 10:11
  Speaker 2: about to have a stormer put in on his way
• 10:12
  Speaker 2: to theater because he needed to stand there and then right.
• 10:18
  Speaker 2: He's a very religious man and came out of that
• 10:25
  Speaker 2: whole situation. He's now had to reverse that and his
• 10:27
  Speaker 2: living fine, but came out of that with God gave
• 10:31
  Speaker 2: me this to help other people, Okay. So he had
• 10:36
  Speaker 2: to source all of his stuff from Zimbabwe and South
• 10:38
  Speaker 2: Africa at the time, and faced all of the taboo
• 10:44
  Speaker 2: of you know, you're having a stormer and the pool situation,
• 10:46
  Speaker 2: and he'd recently got married and it was very much
• 10:49
  Speaker 2: a thing of all your wife's gonna leave you because
• 10:51
  Speaker 2: now you're not a full man and all of that stuff, right,
• 10:54
  Speaker 2: very very very raw things. She did not, and they
• 10:58
  Speaker 2: have a beautif baby girl and good people. But anyway,
• 11:03
  Speaker 2: he came out the end of it and said, no,
• 11:07
  Speaker 2: I got to do something. So started this Engio with
• 11:10
  Speaker 2: a couple of his family members who actually worked for
• 11:12
  Speaker 2: a different Engino at the time and things like us,
• 11:15
  Speaker 2: they had the knowledge of what to do, right, And
• 11:18
  Speaker 2: he came to our house with literally what I was
• 11:22
  Speaker 2: a bag of goodies, a party bag of Stromer supplies,
• 11:28
  Speaker 2: and was like, try this. If that don't work, try this.
• 11:30
  Speaker 2: If that don't work, try this. If that don't work,
• 11:32
  Speaker 2: try this. She was baby was sleeping at the time,
• 11:36
  Speaker 2: but I had photos, so I showed him and he
• 11:38
  Speaker 2: was like, ooh, you need help, and I'm like, yeah,
• 11:41
  Speaker 2: I know. So we use different types of creams, different
• 11:47
  Speaker 2: types of powders. We mixed creams and powders. We used
• 11:50
  Speaker 2: the spray which came from South Africa from the friend,
• 11:54
  Speaker 2: and that cleared up the excoriation to the point of
• 12:00
  Speaker 2: managed to get a bag back on her when she
• 12:03
  Speaker 2: came out of the reversal, sorry, out of the reception surgery.
• 12:10
  Speaker 2: So she had her bowel resection on the tenth of June.
• 12:13
  Speaker 2: So between May thirteenth and the tenth of June twelfth
• 12:18
  Speaker 2: and the tenth of June, she had the stormer and
• 12:23
  Speaker 2: then went in for the reception, so they removed twelve
• 12:27
  Speaker 2: centimeters so she was confirmed short segment. I for got
• 12:33
  Speaker 2: mispapped out. Yeah, confirmed short segment. They removed the sigmoid
• 12:37
  Speaker 2: part to the rectum and then did the pull through
• 12:39
  Speaker 2: procedure and made the news as well at the same time.
• 12:46
  Speaker 2: But we were never told about dilutation until after, right,
• 12:53
  Speaker 2: which was actually the worst part of it for me.
• 12:56
  Speaker 2: I'll tell you what happened. So, yeah, tenth of June.
• 12:59
  Speaker 2: We all went and told we would go into it afterwards,
• 13:04
  Speaker 2: so we were like moved to the the ward was
• 13:07
  Speaker 2: actually it was on the same ward. It was still
• 13:09
  Speaker 2: the pediatric surgical award, but you were in that like
• 13:11
  Speaker 2: high dependency. I would say zoo because it was just glass.
• 13:18
  Speaker 2: They could see straight into you from the nurses station.
• 13:21
  Speaker 2: They could see you directly, and they were four beds
• 13:24
  Speaker 2: in there, so anybody walking past was always looking in
• 13:28
  Speaker 2: and whatnot. Like to me, I just felt like I
• 13:30
  Speaker 2: was fishball rather than so I was a fishball. And
• 13:35
  Speaker 2: we were in there then obviously with other patients as well,
• 13:40
  Speaker 2: and unfortunately two out of the other three were burns patients,
• 13:44
  Speaker 2: so they had to keep the room warm, and Nellelli
• 13:50
  Speaker 2: ran a fever and I'm like, guys, you'd be cool
• 13:54
  Speaker 2: if not warm. And it was so June for us
• 13:57
  Speaker 2: is winter and Zambia. Nellelli was like I had her
• 14:01
  Speaker 2: on a puppy pad type thing so that she didn't
• 14:03
  Speaker 2: even need to have a nappy on. But we managed
• 14:06
  Speaker 2: to get a bag on her. And again we weren't
• 14:08
  Speaker 2: told that like it went into shock the storm, I
• 14:11
  Speaker 2: was in shock, but the wait for it to be
• 14:13
  Speaker 2: come active again. So I was like, why is nothing
• 14:15
  Speaker 2: coming out of the storm? I why am I not
• 14:16
  Speaker 2: draining it? It's been twelve hours, and it's like, oh no,
• 14:20
  Speaker 2: it's it's because the bowel is in shock. It's been
• 14:22
  Speaker 2: played around with him. We're like, hmm before and on after, right,
• 14:27
  Speaker 2: So we wented a lot along the way on the
• 14:29
  Speaker 2: job training, should we say, oh yes, And we were
• 14:33
  Speaker 2: there just over four y eight hours on the hedge too,
• 14:38
  Speaker 2: and then we would look back to a room sideward
• 14:41
  Speaker 2: type thing, to two beds in a room. But we
• 14:43
  Speaker 2: were on our own, luckily on the on the Wednesday, Yeah,
• 14:48
  Speaker 2: on the Wednesday afternoon. So the Monday was the surgery.
• 14:50
  Speaker 2: This was the Wednesday afternoon. But we were also told
• 14:53
  Speaker 2: the surgery would be between three and four hours, and
• 14:55
  Speaker 2: it was seven and a half.
• 14:57
  Speaker 3: M hm hm hmm.
• 14:59
  Speaker 2: Now that was on day that. Yeah, at least I
• 15:03
  Speaker 2: was prepared for handing her over from the last time
• 15:07
  Speaker 2: on the last time, but I wasn't prepared on having
• 15:09
  Speaker 2: a back because seven and a half hours under anesthesia
• 15:12
  Speaker 2: is a lot different to thick minutes.
• 15:14
  Speaker 3: Oh yes, huge, right.
• 15:17
  Speaker 2: So she was out for the count obviously on this
• 15:20
  Speaker 2: massive bed like a normal hospital bed. She's just this
• 15:24
  Speaker 2: little baby on it. The other thing we had to
• 15:28
  Speaker 2: do was we had to give blood because we had
• 15:31
  Speaker 2: to make sure there was blood if in case you
• 15:33
  Speaker 2: needed a blood transfusion. Obviously in the UK, you're just
• 15:38
  Speaker 2: not there's a little more. It's not usually what happened
• 15:43
  Speaker 2: in third world countries. No, So the only way to
• 15:47
  Speaker 2: guarantee she had blood was that we had to go
• 15:49
  Speaker 2: and donate and then we had to get the numbers
• 15:54
  Speaker 2: and we had to give that to the junior doctor
• 15:56
  Speaker 2: the morning of surgery so that they could call the
• 15:59
  Speaker 2: bloodbad and say this patient has had blood donated, we
• 16:03
  Speaker 2: need to be given this amount of units.
• 16:05
  Speaker 1: Okay, right.
• 16:09
  Speaker 2: So luckily both me and my husband are the same
• 16:12
  Speaker 2: blood type, so she's the same blood type. So we
• 16:15
  Speaker 2: always had we always had that, you know, assurance of
• 16:19
  Speaker 2: there was somebody else to give blood if needs be right.
• 16:24
  Speaker 2: But she did need a blood transfation, but she only
• 16:27
  Speaker 2: had it was like half a unit. I think, Okay,
• 16:33
  Speaker 2: she didn't need a lot, but she did need some.
• 16:39
  Speaker 2: But obviously they do that like they put the drain
• 16:41
  Speaker 2: into her for that as like she's in recovery and
• 16:43
  Speaker 2: coming out and whatnot, which again I didn't know that.
• 16:45
  Speaker 2: So like seeing the blood there and her and all,
• 16:49
  Speaker 2: it was grosso, you know, to somebody who's not a
• 16:51
  Speaker 2: medical person, it was a lot. Yeah. And then came
• 16:56
  Speaker 2: the bottle with what they took out of her.
• 17:00
  Speaker 3: Hobbet.
• 17:01
  Speaker 2: That was mm hmm. That little sample. We now had
• 17:07
  Speaker 2: the bigger sample, oh yes, and that it was in
• 17:12
  Speaker 2: is like an ivy fluid bottle, right, that sort of size.
• 17:19
  Speaker 2: And then yet it was handed over to us and
• 17:20
  Speaker 2: I was like, look, any sort of human remains, be
• 17:25
  Speaker 2: like by law has to go to a lab, so
• 17:28
  Speaker 2: it's up to you what you do with it. But
• 17:31
  Speaker 2: you can get that sent back, sent off now and
• 17:33
  Speaker 2: confirmed of what parts have hirshbrungs, and you know, because
• 17:37
  Speaker 2: they went in as far as they could and then
• 17:39
  Speaker 2: a little bit further right just to make sure you've
• 17:41
  Speaker 2: got everything. So it was like labeled with five or
• 17:45
  Speaker 2: six different parts, and luckily all of that came back
• 17:50
  Speaker 2: clear and stuff of like, yes, this part did have
• 17:54
  Speaker 2: hershbrans and then there was a part that didn't have
• 17:56
  Speaker 2: so it was it was what they needed to see, right,
• 17:58
  Speaker 2: everything was correct. So we had that back about ten
• 18:05
  Speaker 2: days later. I think it was I think we were
• 18:06
  Speaker 2: still in the hospital, And we're in the hospital nine
• 18:08
  Speaker 2: days after the reception and we went home with a
• 18:13
  Speaker 2: bag on with no nurses this time because we were like,
• 18:17
  Speaker 2: do you know what? Am I right?
• 18:19
  Speaker 3: No, you don't.
• 18:20
  Speaker 2: We went through seven nurses in that month because we
• 18:23
  Speaker 2: had one nurse that was asleep your night chief. I
• 18:25
  Speaker 2: had to wake him up to come and do a
• 18:26
  Speaker 2: bag thing. We had a nurse that asked us what
• 18:35
  Speaker 2: we should use around the strummer. We had one that
• 18:39
  Speaker 2: just didn't turn up one day. Yeah. Then we had
• 18:43
  Speaker 2: one that was amazing, and I wish we could have
• 18:46
  Speaker 2: just bottled her up and kept her. But she came
• 18:50
  Speaker 2: to the hospital with us the second time, and she
• 18:52
  Speaker 2: stayed the first The first couple of nights she couldn't
• 18:55
  Speaker 2: stay because of HGU only one person could stay. And
• 18:59
  Speaker 2: then when we come out of HDU because we had
• 19:02
  Speaker 2: like a couple of days we paid for, she was
• 19:04
  Speaker 2: a god, let me come and like, I'll stay the
• 19:07
  Speaker 2: night with her and you can go home and sleep.
• 19:10
  Speaker 2: But me and my husband we just took shifts. We
• 19:13
  Speaker 2: were like, look, let's let's do whatever works for us. Yes,
• 19:18
  Speaker 2: I trust her here, she's probably better off being here.
• 19:21
  Speaker 2: Medically wise enough, she's got a fever or whatever, okay,
• 19:25
  Speaker 2: And she was good to like chase up the other
• 19:27
  Speaker 2: nurses because energest are overworked, so is every other nurse
• 19:31
  Speaker 2: right also very over worked. So she would like go
• 19:35
  Speaker 2: to the nurses station and be like, oh, these are robs.
• 19:37
  Speaker 2: You don't need to come and see how these are
• 19:38
  Speaker 2: robs and all that type of stuff. Right, So she
• 19:41
  Speaker 2: said about three three or four days. So it was
• 19:43
  Speaker 2: nice to have somebody around, especially on three oclock in
• 19:45
  Speaker 2: the morning when you can't sleep and you're like, what
• 19:48
  Speaker 2: did you do do today? You know, I have a
• 19:50
  Speaker 2: little chat something and get to know somewhere she was.
• 19:55
  Speaker 2: She was great and even to this day now she's amazing.
• 19:58
  Speaker 2: She's still a friend. Right. But we went home, no
• 20:01
  Speaker 2: nurses this time, and she had no fevers, she was eating.
• 20:05
  Speaker 2: Leaving hospital, she was she was herself, you know, because
• 20:08
  Speaker 2: she had already been living with a storm for like
• 20:10
  Speaker 2: almost six weeks at this point, so even though she
• 20:13
  Speaker 2: just had major surgery, she was very much okay in herself.
• 20:19
  Speaker 2: And the wound was they hadn't they had undressed it
• 20:22
  Speaker 2: by the time we'd left, it already healed and dried up.
• 20:25
  Speaker 2: Like everything was okay with that. We didn't even need
• 20:28
  Speaker 2: to keep cleaning it. It was it was all okay.
• 20:32
  Speaker 2: And then we were told come back on the twenty fourth,
• 20:35
  Speaker 2: which was two weeks after the reception, and I was
• 20:38
  Speaker 2: like what and they were like, oh, so today, now
• 20:45
  Speaker 2: as you leave, we'll start the dialat no. Sorry, we're
• 20:48
  Speaker 2: going to tell you about the dilutation part. And I'm
• 20:50
  Speaker 2: like words English, not bed and they're like no, on Monday,
• 20:58
  Speaker 2: we need to take her to surgery to use an
• 21:00
  Speaker 2: instrument to dilate the rectum and the anus into the
• 21:08
  Speaker 2: rectum so that when the stool does eventually come through
• 21:12
  Speaker 2: a storm of everse it it's got a pathway. And
• 21:14
  Speaker 2: I'm like, but when is an instrument? I'm like, what
• 21:20
  Speaker 2: a drum stick?
• 21:21
  Speaker 3: Yeah? Yeah, it's the first thing you think of when
• 21:24
  Speaker 3: you hear instrument.
• 21:26
  Speaker 2: Right. So they're like, no, we have a medical tour,
• 21:28
  Speaker 2: but imagine like a candlestick. It's something like that. I'm like, yeah,
• 21:33
  Speaker 2: maybe I didn't want to imagine it. So I'm already like, okay,
• 21:38
  Speaker 2: do we need to stay They're like no, like obviously
• 21:40
  Speaker 2: she'll have anesthetics. Then she's not gonnat us do it
• 21:42
  Speaker 2: is she So obviously she's gonna be put to sleep,
• 21:45
  Speaker 2: but it's gonna be like a quick thing in and out,
• 21:48
  Speaker 2: and then from there you'll be able to continue at home.
• 21:51
  Speaker 2: And I just went, excuse you, like at home doing
• 21:58
  Speaker 2: what with what?
• 22:00
  Speaker 3: Yeah?
• 22:02
  Speaker 2: And then obviously they were like with with with with
• 22:06
  Speaker 2: your finger and I'm like, come again, and they're like, yeah,
• 22:16
  Speaker 2: we were just used on some sort of lubricant or
• 22:19
  Speaker 2: vaseline on a glove and then you use your your
• 22:24
  Speaker 2: pointing finger at first, and then sorry, your baby finger
• 22:27
  Speaker 2: at first, and then move on to your pointing finger,
• 22:31
  Speaker 2: and we start here and we finish here. Once it
• 22:33
  Speaker 2: gets here, she can have the reversal.
• 22:37
  Speaker 3: Oh.
• 22:38
  Speaker 2: And I was just stood there looking at my husband,
• 22:40
  Speaker 2: looking at the doctors, look at the child, looking back
• 22:44
  Speaker 2: up the husband, like excuse you again, wait what And
• 22:51
  Speaker 2: they were like, well, yeah, because we've done this poll
• 22:53
  Speaker 2: through and it needs to be widened and all of
• 22:55
  Speaker 2: this stuff. And I'm like, no literature says this bit.
• 22:59
  Speaker 3: I can't have you got any emails.
• 23:01
  Speaker 2: From people, nothing at all. And they're like no, this
• 23:05
  Speaker 2: this is the way it's done and whatnot. I'm like, okay, cool.
• 23:09
  Speaker 2: So at that point I was like what if I'm
• 23:12
  Speaker 2: doing it wrong right, Like I'm not a nurse. I
• 23:17
  Speaker 2: don't know if it's feeling the way it's sposed to feel.
• 23:19
  Speaker 2: I don't want to feel it then any type of way,
• 23:21
  Speaker 2: you know. And I looked looked at me like, well,
• 23:25
  Speaker 2: it's not going to be me either, clearly. So at
• 23:29
  Speaker 2: that point, my sister in law was actually a physiotherapist,
• 23:33
  Speaker 2: so she has a lot of friends who did like
• 23:36
  Speaker 2: naysay or physio or have some sort of medical knowledge.
• 23:40
  Speaker 2: And she had a friend at the time who was
• 23:41
  Speaker 2: like looking for a bit of work, and I was like,
• 23:45
  Speaker 2: do you know what, Let's give her something so it
• 23:49
  Speaker 2: keeps so busy and then she can come home when
• 23:52
  Speaker 2: my husband's not there, as in there's always somebody then
• 23:55
  Speaker 2: in the house, like if I need to pop out
• 23:57
  Speaker 2: to somebody who knows how to drain the bag, because
• 24:00
  Speaker 2: it's also very common in Zambid have like a nanny
• 24:03
  Speaker 2: or a maid or a helper or whatever. So we
• 24:06
  Speaker 2: had a we'd say house help. I don't know that
• 24:10
  Speaker 2: we'd made the two British form a fashioned as well. Yeah,
• 24:18
  Speaker 2: who used to come Monday, Tuesday, Thursday, Friday and she
• 24:22
  Speaker 2: would come and clean and I used to teach online
• 24:26
  Speaker 2: at the time, so she would help my daughter, like
• 24:31
  Speaker 2: if she woke up and I was teaching, So I
• 24:33
  Speaker 2: used to plan my teaching aroun when she was asleep,
• 24:35
  Speaker 2: but she would be lay in case she woke up
• 24:37
  Speaker 2: and like she'd helped cook and things like that, because again,
• 24:41
  Speaker 2: living in third world country, you have other challenges like
• 24:44
  Speaker 2: electricity and water isn't always there mind two very extremes
• 24:51
  Speaker 2: of you know, you get three hours of power every
• 24:52
  Speaker 2: couple of days, okay, hmm. So we ended up putting
• 24:58
  Speaker 2: the generator just to make sure we had l like
• 24:59
  Speaker 2: to all times, make sure everything was clean. We put
• 25:03
  Speaker 2: an extra water tank to make sure we always had water,
• 25:06
  Speaker 2: all of those things which we wouldn't have had to
• 25:07
  Speaker 2: think about if we went to the UK. Right, but
• 25:11
  Speaker 2: let's remember that even up to now, maybe she wouldn't
• 25:13
  Speaker 2: have had anything dead. So I still stick by my decision.
• 25:18
  Speaker 2: But anyway, so we said, let's always have somebody in
• 25:21
  Speaker 2: the house and somebody that would come with me because
• 25:25
  Speaker 2: I was still taken out to all of our baby
• 25:27
  Speaker 2: classes and all. She had a music class, a one
• 25:30
  Speaker 2: year old music class, so they used to go like
• 25:32
  Speaker 2: things around and she used to go to Jolly Totts,
• 25:35
  Speaker 2: so they used to waddle around to music and walk
• 25:38
  Speaker 2: over some little things, sensory play stuff and you know
• 25:41
  Speaker 2: that type of stuff. I'm like, she still needs to
• 25:42
  Speaker 2: do that. I used to need her to do that.
• 25:45
  Speaker 2: I used toill need to be around mother's But it
• 25:48
  Speaker 2: just always meant I had like somebody with me to
• 25:51
  Speaker 2: help in that case, which I didn't feel that was
• 25:55
  Speaker 2: fair on our house help because she didn't sign up
• 25:58
  Speaker 2: for that job, right, even though that woman is precious.
• 26:04
  Speaker 2: She came to the hospital, she sat in the room
• 26:07
  Speaker 2: for hours and hours. She did help me drain bags. Wow,
• 26:14
  Speaker 2: she did help me calm nale. She helped me do
• 26:20
  Speaker 2: so many things that was so above and beyond. But
• 26:22
  Speaker 2: she was like, Madam, I've watched this child since she
• 26:25
  Speaker 2: was born, like she's my child too, you know.
• 26:30
  Speaker 3: Yeah.
• 26:31
  Speaker 2: Yeah, I didn't feel like it was fair on her
• 26:33
  Speaker 2: at the time. So we had my cisionals friend that
• 26:36
  Speaker 2: came so she was there, was able to drain a bag,
• 26:39
  Speaker 2: and I was confident that she's able to drain a bag.
• 26:42
  Speaker 2: But whether it was fortunate or unfortunate, she never had
• 26:46
  Speaker 2: a bag leak unless I was around.
• 26:48
  Speaker 3: Oh, isn't that always the case?
• 26:51
  Speaker 2: Right? So she never had a change of bag. So
• 26:54
  Speaker 2: and then I was like, do you know what, realistically,
• 26:57
  Speaker 2: now do I need help? Because I was still trained
• 27:00
  Speaker 2: in a bag leek by myself because it always used
• 27:02
  Speaker 2: to happen after she'd left and my husband was on
• 27:04
  Speaker 2: his way home. Oh no, you can go. You's just
• 27:06
  Speaker 2: down the road and then pull everywhere because she's had
• 27:09
  Speaker 2: a bag leak. So now I even managed to end
• 27:12
  Speaker 2: up changing up by myself, a full bag change by
• 27:15
  Speaker 2: myself when she was like sixteen seventeen months wanting everything,
• 27:21
  Speaker 2: and we used to say shared an emotional support spray
• 27:24
  Speaker 2: because she just hold onto the spray bottle of the
• 27:27
  Speaker 2: spray we used to put around this and she just
• 27:31
  Speaker 2: pull the lid on, pulled it off on off, on off,
• 27:34
  Speaker 2: on off, and that saved me a lot. And I
• 27:37
  Speaker 2: just throw it a bit of goes, throw a wet wipe,
• 27:39
  Speaker 2: throw a n happy as I'm like trying to do
• 27:41
  Speaker 2: this thing. But I'd always know set up, you had
• 27:43
  Speaker 2: your routine. You knew this had to go first, and
• 27:45
  Speaker 2: then this and then this and then that, and then
• 27:49
  Speaker 2: you know, some days I don't know what I have
• 27:50
  Speaker 2: a little run around there a minute, right, sorry, go on,
• 27:54
  Speaker 2: I will run around the a a minute. Check a
• 27:55
  Speaker 2: bit of goes on that off, of course, you know
• 27:57
  Speaker 2: that type of thing. Check a bit of goals in
• 27:59
  Speaker 2: the nappy, give her and just do to in the
• 28:01
  Speaker 2: bath or whatever you know. But that was something that
• 28:04
  Speaker 2: terrified me as a bath okay, mainly because it took
• 28:10
  Speaker 2: us so long to get a bag on her. And
• 28:12
  Speaker 2: I was almost a month to get a bag on her.
• 28:14
  Speaker 2: And I know these bags are designed to be able
• 28:17
  Speaker 2: to get wet and all that sort of stuff, but
• 28:20
  Speaker 2: the thought of having to change a bag because we
• 28:23
  Speaker 2: got it wet rather than because it needed to change
• 28:25
  Speaker 2: in I was like, I'd rather sponge Batha. I'd rather
• 28:31
  Speaker 2: just sponge Batha. So we should just sit her in
• 28:33
  Speaker 2: the bath and then put water around her and cleaner
• 28:37
  Speaker 2: as much as possible in that sense. And that was
• 28:39
  Speaker 2: difficulty to try. That loves water. That it was just
• 28:42
  Speaker 2: something I was terrified of. And my friend, the one
• 28:47
  Speaker 2: with the the sena, also had the stormer. She said
• 28:51
  Speaker 2: to me, jes put it in the bath. I'll come
• 28:53
  Speaker 2: and put it in for you, and I'm like, I can't.
• 28:56
  Speaker 2: It's just the one thing I can't do I just can't.
• 29:00
  Speaker 2: And it was fine. She was clean, right so the storm,
• 29:03
  Speaker 2: I was clean, she was clean, she didn't need to
• 29:05
  Speaker 2: have the bath. But it was one thing I really
• 29:07
  Speaker 2: couldn't get past. But anyway, so the divitation started and
• 29:13
  Speaker 2: the friend, my sister and his friend came. But then
• 29:17
  Speaker 2: unfortunately her son wasn't well a couple of times, and
• 29:20
  Speaker 2: I just couldn't risk my daughter having a colden flow.
• 29:25
  Speaker 2: She didn't need any more stress on that, you know.
• 29:28
  Speaker 2: And it got to the point where I was like,
• 29:29
  Speaker 2: you know what, I can do this. It's fine. I'm
• 29:34
  Speaker 2: just going to do it by myself. I went to
• 29:37
  Speaker 2: places I was familiar with, though I never took it
• 29:39
  Speaker 2: to the supermarket and never took her to places where
• 29:42
  Speaker 2: if she needed a change of a bag, I wouldn't
• 29:46
  Speaker 2: be able to do it there. And then and I
• 29:48
  Speaker 2: took at the friend's houses. I took her to the
• 29:51
  Speaker 2: same playgroup where everybody knew what was going on and
• 29:53
  Speaker 2: would be like one hand, I want to sit down
• 29:55
  Speaker 2: and we'll have it for five minutes. Do you want
• 29:57
  Speaker 2: to go and run an errand you know that type
• 29:59
  Speaker 2: of thing. We had an amazing support system there. My
• 30:03
  Speaker 2: one friend set up a food drive that sent food
• 30:06
  Speaker 2: to the hospital for us every day. They sent food
• 30:09
  Speaker 2: home for us for the first month after every surgery
• 30:13
  Speaker 2: like they were amazing. But back to the ang O.
• 30:19
  Speaker 2: He kept us in flux of everything that we needed
• 30:24
  Speaker 2: anytime we needed it, bags, sprays, whatever he had. He
• 30:28
  Speaker 2: gave us for nothing.
• 30:31
  Speaker 3: Wow.
• 30:32
  Speaker 2: Right, because it's charity right, ask for money, they can
• 30:37
  Speaker 2: ask for donations. They can't charge you for something realistically, right,
• 30:41
  Speaker 2: because I can't make profit saw or any profit that
• 30:47
  Speaker 2: is there goes back into the charity bank account.
• 30:50
  Speaker 3: To the bottom line has to be zero exactly.
• 30:56
  Speaker 2: So I am quite a sociable person, quite a talkative person,
• 31:01
  Speaker 2: for I've noticed, and I said to my husband, we
• 31:05
  Speaker 2: gotta do more. We can't just give them something and
• 31:07
  Speaker 2: walk away from this. We can't. So I use my
• 31:13
  Speaker 2: daughter's story to make people feel sorry for people with
• 31:17
  Speaker 2: traumas I did, because at the end of the day,
• 31:22
  Speaker 2: people came home. When it's a child, they just do
• 31:26
  Speaker 2: they just do. So, No, it didn't use her, it
• 31:31
  Speaker 2: was her situation at the time. It was the complete
• 31:34
  Speaker 2: truth that it made people think. And I did a
• 31:41
  Speaker 2: family fund event which should have been before she had
• 31:45
  Speaker 2: a reverse out. But because of the dilutations that we
• 31:47
  Speaker 2: went on amount and things didn't progress as quickly as
• 31:51
  Speaker 2: it should have. Unfortunately, she was still in hospital after
• 31:54
  Speaker 2: the reversal when the event happened. But my husband was like, go,
• 31:58
  Speaker 2: you've done all this work, You've gotta go. But yes,
• 32:01
  Speaker 2: set up the family Funday event with like bouncy castle,
• 32:04
  Speaker 2: soft play, a food market like food trucks, and I
• 32:09
  Speaker 2: did a raffle. So I sold the raffle tickets at
• 32:12
  Speaker 2: fifty quatch ticket which is like just over pound, but
• 32:17
  Speaker 2: used contacts such as rather than Blue gave us a
• 32:21
  Speaker 2: free night's day. The rads some Blue Hotel and that
• 32:24
  Speaker 2: gave us a free night's day. They gave us two
• 32:27
  Speaker 2: adult free buffet. They do a buffet on a Friday
• 32:29
  Speaker 2: night agame buffet. There's a Safari lodge like a resort
• 32:35
  Speaker 2: thing just outside of the capital. Gave us a weekend
• 32:41
  Speaker 2: for a family of four and a day visit for
• 32:44
  Speaker 2: family of four. We had a piece of jewelry from
• 32:49
  Speaker 2: a jewels which called Duos of Africa, which is like
• 32:51
  Speaker 2: the main Juran sami are basically we had over fifty
• 32:55
  Speaker 2: prizes from something like a car wash to D's Blue
• 32:59
  Speaker 2: st We had one hundred and fifty dollars photography, family
• 33:03
  Speaker 2: photo shoot. We had massages, gift voutures for like restaurants
• 33:10
  Speaker 2: and random stuff. But like so many people got on board.
• 33:15
  Speaker 2: And then we also had just private donations. A colleague
• 33:20
  Speaker 2: with my husband's just gave five thousand quatcha, which is
• 33:22
  Speaker 2: like two hundred and something pound, which is like almost
• 33:27
  Speaker 2: a necessalary.
• 33:28
  Speaker 1: You know.
• 33:30
  Speaker 2: There's there were a local bar that I frequent before.
• 33:39
  Speaker 2: The manager was like, oh, let me see what I
• 33:41
  Speaker 2: can do for you, spoke to the owner. The owner
• 33:42
  Speaker 2: sent five thousand quatter.
• 33:44
  Speaker 3: Wow.
• 33:45
  Speaker 2: Yeah. We had a lot of just donations. We had things.
• 33:51
  Speaker 2: So I did the raffle tickets at a fifty qutcha
• 33:52
  Speaker 2: one hundred quacha for three, so more people would buy
• 33:55
  Speaker 2: three than one, right, so yeah, which was really good.
• 33:59
  Speaker 2: So overall I raised almost three grand wow for this charity.
• 34:06
  Speaker 2: And actually they had a container of supplies that was
• 34:10
  Speaker 2: on its way and they didn't have the money to
• 34:13
  Speaker 2: clear it at the border, but then they did. Oh,
• 34:18
  Speaker 2: so they used that money to get that container across
• 34:21
  Speaker 2: the border and now are distributing that throughout of Zambia.
• 34:26
  Speaker 2: Because you've got people that can't even have access to
• 34:30
  Speaker 2: like another country, never mind getting something from there, you know,
• 34:35
  Speaker 2: which they'll just use like plastic.
• 34:38
  Speaker 3: Bags, yeah, but you know exactly where, but.
• 34:43
  Speaker 2: Use a bit of cloth.
• 34:44
  Speaker 3: Yeah right.
• 34:46
  Speaker 2: People then smell, people get infections. People know to do
• 34:50
  Speaker 2: things still. And actually I got the surgeons on board
• 34:55
  Speaker 2: that I got surgeons to keep donations and by raphle tickets.
• 34:58
  Speaker 3: Wow.
• 35:00
  Speaker 2: Right, because they also didn't know this engino existed. You know,
• 35:03
  Speaker 2: that can help so many people for them and the NGO.
• 35:08
  Speaker 2: What they're also trying to do is set up trainings
• 35:12
  Speaker 2: four nurses so they can be stormer trained, so that
• 35:16
  Speaker 2: every ward of every government facility can have at least
• 35:20
  Speaker 2: one nurse on shift that knows how to change of bag.
• 35:26
  Speaker 1: For that.
• 35:26
  Speaker 2: Right now, every single time we were on that pediatric
• 35:30
  Speaker 2: surgical ward, there was at least two people with a
• 35:33
  Speaker 2: stormer at least, right, I personally put a stormer put
• 35:41
  Speaker 2: a bag on a girl's stormer. She she didn't have
• 35:46
  Speaker 2: hersh bruns, but she had a double barrel stormer which
• 35:50
  Speaker 2: was all over the place. Actually, she had a lot
• 35:52
  Speaker 2: of surgeries, a lot going on, and she was sent
• 35:55
  Speaker 2: in but she was like pot five stone soaking wet
• 36:00
  Speaker 2: and didn't speak a look of English, only spoke local language.
• 36:04
  Speaker 2: And I was there putting souji cream and some storm
• 36:06
  Speaker 2: some storm of powder and the bag on her and
• 36:09
  Speaker 2: just gave her everything I had at the time, and
• 36:12
  Speaker 2: the mother just looked at me and was like, what's that?
• 36:17
  Speaker 2: So I had to get the surgeon back in and
• 36:18
  Speaker 2: I was like, can you translate of like every time
• 36:22
  Speaker 2: now that there's something in there, and she had illiost
• 36:24
  Speaker 2: to me as well, I'm like, you just open this
• 36:26
  Speaker 2: and drain it and then if you have any sort
• 36:28
  Speaker 2: of leak out of the bag, that's when you have
• 36:30
  Speaker 2: to change the bag. And she's still looking at me
• 36:33
  Speaker 2: like she got two heads. So like I talked her through,
• 36:36
  Speaker 2: like no, this is the size now, I've already cut
• 36:38
  Speaker 2: one for you. Keep this little bit, put it on
• 36:41
  Speaker 2: the other one, draw a line cut around that one,
• 36:43
  Speaker 2: you know, like use the sensor forever and whatever. And
• 36:47
  Speaker 2: the surgeon just looked at me and was like, yeah,
• 36:49
  Speaker 2: you're doing things I could never like she'd still have
• 36:52
  Speaker 2: the time too.
• 36:53
  Speaker 3: No, No, that's what I was saying before, wasn't that.
• 36:57
  Speaker 2: And that was like the number two surgeon actually from
• 36:59
  Speaker 2: like the main my daughter had three three surgeons altogether,
• 37:05
  Speaker 2: the main one and the two that assisted. But no,
• 37:09
  Speaker 2: without that engo, we wouldn't have had all the supplies
• 37:12
  Speaker 2: that we needed. And the final thing that actually worked
• 37:17
  Speaker 2: for her, the cream was a coloplast cream, but it
• 37:21
  Speaker 2: was hydraw somethin wound cream, so it wasn't a specific
• 37:28
  Speaker 2: storm my cream, but because of how bad the excoriation was,
• 37:33
  Speaker 2: she needed it. Yeah, and that was that, you know.
• 37:38
  Speaker 2: We we did have leaks and you're like, oh my god,
• 37:42
  Speaker 2: the skin is red. Oh my god, the skin is red.
• 37:45
  Speaker 2: And then you're like, okay, give her five ten minutes
• 37:48
  Speaker 2: where we leave the bag off singing to hilst you're
• 37:51
  Speaker 2: standing there. She's on the change of her mad and
• 37:52
  Speaker 2: I'll give her ten minutes, just let her breathe and
• 37:54
  Speaker 2: then put it on. We had leaks in the night.
• 37:57
  Speaker 2: You're like, oh, for God's sick, why at this time
• 38:01
  Speaker 2: going to be two in the afternoon, so too in
• 38:02
  Speaker 2: the night, you know, can you know? And she's a
• 38:05
  Speaker 2: really good sleeper, always has been. And she was a trooper,
• 38:09
  Speaker 2: absolute trooper through it all. But I still don't feel
• 38:16
  Speaker 2: like I would be beheaded to do it again, even
• 38:18
  Speaker 2: though I went through it all because it's not gonna
• 38:21
  Speaker 2: be the same as it I saw most horma journey
• 38:24
  Speaker 2: is the same. But thankfully she had her reverse out
• 38:28
  Speaker 2: on the twelfth of August. We were discharged on the
• 38:33
  Speaker 2: nineteenth and we were just you know, the Tuesday. We
• 38:37
  Speaker 2: were just started on the Monday afternoon. We had to
• 38:41
  Speaker 2: wait for the surgeon to come down from her elective
• 38:43
  Speaker 2: surgeries on the Monday morning, and we were dis charged
• 38:46
  Speaker 2: on the Monday afternoon because my daughter had actually dragged
• 38:48
  Speaker 2: her bag outside the door into the corridor and was
• 38:51
  Speaker 2: going home, home home. Through the eighteen months, but my
• 38:59
  Speaker 2: husband's talk so much of like I just want to
• 39:01
  Speaker 2: go home. I just want to go home. Let's go home.
• 39:04
  Speaker 2: But she was like home, home, home, home, and the
• 39:08
  Speaker 2: sage and came down and my husband's actually taken a
• 39:11
  Speaker 2: walk with it with my daughter outside because she was
• 39:14
  Speaker 2: not at this point. She's an eighteen month old baby
• 39:18
  Speaker 2: wandering around. She doesn't want to be stuck in a
• 39:20
  Speaker 2: room the shit. And she came in and she was
• 39:22
  Speaker 2: like whe is she I was like, look at the window.
• 39:25
  Speaker 2: She's running up and down the car park. She said, yeah,
• 39:28
  Speaker 2: let me go fill in the forms. You go home
• 39:31
  Speaker 2: and I'm like, see right, and she said, no, this
• 39:34
  Speaker 2: is why I'm a pediatric surgeon, because babies don't bullshit.
• 39:40
  Speaker 2: You know, a child, if they're feeling that well or not,
• 39:43
  Speaker 2: you know, if they're feeling good. Not adults sometimes so
• 39:46
  Speaker 2: sorry for themselves. An adults sometimes the two bloody step.
• 39:49
  Speaker 3: Button, they can be all the way.
• 39:53
  Speaker 2: So she said, this is why I'm a peede surgeon.
• 39:56
  Speaker 2: But we had to continue the diltations, and and we
• 40:03
  Speaker 2: continued for a couple of weeks and then no, about
• 40:08
  Speaker 2: a week, and I was worried that the stool at
• 40:12
  Speaker 2: that time was still very very soft, right, but I
• 40:16
  Speaker 2: was really worried about, you know, her getting backed up
• 40:19
  Speaker 2: and putting pressure on the way they'd done the reversal,
• 40:23
  Speaker 2: and like, the last thing we need is that being
• 40:24
  Speaker 2: bloody set there because of this or whatever, you know.
• 40:27
  Speaker 2: And the surgeon was also not not concerned, but made
• 40:31
  Speaker 2: it known that that would be a possibility if we
• 40:33
  Speaker 2: can't get the store to be passing and stuff.
• 40:35
  Speaker 3: Right.
• 40:36
  Speaker 2: So the surgeon then was like, do you know what,
• 40:39
  Speaker 2: if you're happy for it, bring her to the hospital
• 40:42
  Speaker 2: as many times in a week you want, and we
• 40:44
  Speaker 2: will do at least one a day and then you
• 40:46
  Speaker 2: do the evening. You do the morning. We do the evening.
• 40:49
  Speaker 2: That's why we do the morning, you do the evening.
• 40:53
  Speaker 2: So we took her three times a week for a
• 40:56
  Speaker 2: little while, and then I was like, you know what,
• 40:57
  Speaker 2: I'm doing it myself. She's pulling. I hate it, she
• 41:00
  Speaker 2: hates it, my husband hates it. But there's light. There's
• 41:03
  Speaker 2: lights somewhere, you know. And we went from here to here,
• 41:10
  Speaker 2: sorry around from here, sorry from around, and everything was
• 41:16
  Speaker 2: was okay. You know, we had to follow a diet
• 41:19
  Speaker 2: of you know, softer foods and to give her too
• 41:21
  Speaker 2: many harder foods and all that sort of stuff. But
• 41:25
  Speaker 2: all we knew was a high fiber diet, right, That's
• 41:27
  Speaker 2: all we knew. So that's anyway, and she was quite fusty,
• 41:33
  Speaker 2: and it was one of those things where we were like, oh,
• 41:35
  Speaker 2: maybe she can have a reverse and I should never
• 41:36
  Speaker 2: be fusty again. Maybe she was fasty because she was
• 41:38
  Speaker 2: always full and she was only ever having the same
• 41:40
  Speaker 2: foods and blah blah blah blah, which now she is
• 41:43
  Speaker 2: actually a lot better and amund of Chinese food she's eating.
• 41:45
  Speaker 2: I was just wild, but she's still quite particular. Would
• 41:50
  Speaker 2: stating things. Now she looked at something and be like,
• 41:52
  Speaker 2: hell no, but you hiding something. She eat it. So
• 41:56
  Speaker 2: you lot of different food things go on, so you
• 42:02
  Speaker 2: know it's gonna take her some time. But unfortunately we
• 42:05
  Speaker 2: had to deal with excoriation on the other end. Literally,
• 42:09
  Speaker 2: she had horrific nappy rash. You's so it wasn't rash,
• 42:13
  Speaker 2: it was burns. It was excoriation, right, And it was
• 42:18
  Speaker 2: one of those things where people would say, oh, just
• 42:21
  Speaker 2: leave an happy offer. My girl got cheeks, doesn't matter
• 42:28
  Speaker 2: where she's got an happy od or not. It takes
• 42:31
  Speaker 2: some time to come out. It was still gonna smudge,
• 42:34
  Speaker 2: you know. She was still having that acidity of the
• 42:36
  Speaker 2: pool that she wasn't used to rub on the skin.
• 42:40
  Speaker 2: Whether that was for a second or for ten minutes,
• 42:43
  Speaker 2: it was still happening. And the amount of times where
• 42:46
  Speaker 2: I lay on the bed with her, with her on
• 42:48
  Speaker 2: that front, with her wide open, You're trying to make
• 42:53
  Speaker 2: her just light it to have some air, and you know,
• 42:56
  Speaker 2: like it just wasn't gonna work. She's an eighteen month
• 42:59
  Speaker 2: old baby. And it get better. There was a cream
• 43:04
  Speaker 2: where we use it. It got better, and then sudden it
• 43:06
  Speaker 2: got worse. Again, and then it got better, and then
• 43:08
  Speaker 2: it got waste, and we tried so many things, and
• 43:13
  Speaker 2: then eventually we had a storminus in the UK that
• 43:21
  Speaker 2: suggested a study that she had found from an Australian
• 43:28
  Speaker 2: pediatric study of post stormers, which was a certain type
• 43:33
  Speaker 2: of stormer powder. It starts with an oh, it's in
• 43:39
  Speaker 2: a draw here somewhere that's with an O, but mixed
• 43:44
  Speaker 2: with pseudo cream half and half pre mixed. So we
• 43:51
  Speaker 2: did a lot of throwing on the cream, throwing on
• 43:54
  Speaker 2: the powder, throwing on the cream, throwing on the powder.
• 43:58
  Speaker 2: But actually if you pre mix makes a huge difference.
• 44:04
  Speaker 2: M So it was suja cream powder mix put right.
• 44:13
  Speaker 2: And if I say that work like magic, it magic.
• 44:20
  Speaker 2: We would have the odd day, but it's start working
• 44:23
  Speaker 2: and the skin would open again. Maybe if she just
• 44:30
  Speaker 2: went a bit more often, Maybe if she did have
• 44:34
  Speaker 2: a bit more harder food, because she wasn't eating anything,
• 44:38
  Speaker 2: so you gave her a pack of hot sets type thing,
• 44:42
  Speaker 2: because you're like, well, she gotta eat. If you're eating,
• 44:44
  Speaker 2: she's eat, And then it would have a bit of
• 44:48
  Speaker 2: a knock on effect that she was having pebbles then
• 44:52
  Speaker 2: rather than a bigger poole so she'd go more often,
• 44:55
  Speaker 2: so then they'd be more you know that type of thing.
• 45:00
  Speaker 2: But somehow, some miracle, I don't know, the start of
• 45:06
  Speaker 2: February this year, so six months later it just stopped
• 45:14
  Speaker 2: and she never had a rash. She was never read.
• 45:18
  Speaker 2: All of the spots now with her, like dark spots
• 45:21
  Speaker 2: that are where the skin healed, are now just like
• 45:28
  Speaker 2: booty spots. They've faded away. She is currently in the
• 45:33
  Speaker 2: middle sort of toilet training because she's in full time
• 45:38
  Speaker 2: kindergarten here, so she's there eight till four and sleeps
• 45:44
  Speaker 2: in school as well. They have a nap in the
• 45:47
  Speaker 2: middle of the day and all of her little friends
• 45:49
  Speaker 2: are going to the toilet, so she's like, oh, let
• 45:51
  Speaker 2: me go. But then in the house she doesn't want
• 45:53
  Speaker 2: to toilet because she's like, I went an abby in
• 45:54
  Speaker 2: the house. So we're not pushing it at the minute.
• 45:58
  Speaker 2: I don't think she is fully ready, and we're about
• 46:00
  Speaker 2: to some holiday and whatnot, so I'm like, I don't
• 46:02
  Speaker 2: want to be beat up holding on the plane, thank you,
• 46:05
  Speaker 2: So I'm gonna wait until we get back and then
• 46:08
  Speaker 2: push it a bit, you know, see, is she ready?
• 46:11
  Speaker 2: But she is still a bit unpredictable. She's not regular
• 46:15
  Speaker 2: with her toileting. She does go more in the afternoon
• 46:17
  Speaker 2: even that she does in the morning because obviously she
• 46:20
  Speaker 2: goes through the night in the morning and then you know,
• 46:24
  Speaker 2: but she'll go some day she goes once, she goes.
• 46:26
  Speaker 2: Some day she doesn't go to all, she goes. Some
• 46:27
  Speaker 2: day she goes five or six times in three hours.
• 46:29
  Speaker 3: Yeah.
• 46:31
  Speaker 2: Right, she does not have a regular pattern. We just
• 46:35
  Speaker 2: need her to know when she's going for us to
• 46:38
  Speaker 2: be able to then toget trainer, you know, yeah, And
• 46:41
  Speaker 2: I know it is one of those drawbacks of after
• 46:43
  Speaker 2: a stormer and after her she brings all that sort
• 46:45
  Speaker 2: of stuff of delay toilet training. And I don't care
• 46:48
  Speaker 2: how long it takes that like it is what it is,
• 46:52
  Speaker 2: as long as she's comfortable and as long as she's
• 46:55
  Speaker 2: not getting any sort of rash and whatever. Again, because
• 46:58
  Speaker 2: that was another reason, I'm like again out of nappies.
• 47:00
  Speaker 2: I'll help with her ashually. But actually we realize, no,
• 47:03
  Speaker 2: whatdn't because if she's still gonna put her, we're gonna
• 47:05
  Speaker 2: put her right. But now she'll tell you, oh, like
• 47:11
  Speaker 2: she'll stand there and go poopy. You could you said
• 47:14
  Speaker 2: that like seconds before we can put on potty on dilect.
• 47:19
  Speaker 2: But consistency has changed even the last week or so.
• 47:24
  Speaker 2: You know, now we're all most so you know, we're
• 47:26
  Speaker 2: ten months post reversal now, and she does seem to
• 47:31
  Speaker 2: be having more slugs. We should, they say, and you
• 47:39
  Speaker 2: can see the consistency is changing and all of that
• 47:42
  Speaker 2: sort of stuff. So I do feel like, you know,
• 47:44
  Speaker 2: we're still not at the end of the road. But
• 47:48
  Speaker 2: she is now ten kilows. She's in double digits, and
• 47:53
  Speaker 2: she was in the sevens during all of the surgeries
• 47:58
  Speaker 2: and we got it. Uh, she was like eight point
• 48:00
  Speaker 2: two eight point three when we left Sammie in February
• 48:04
  Speaker 2: and now she's ten. So Chinese food is definitely not good.
• 48:09
  Speaker 2: And she's eaten a lot of meat now. She was
• 48:11
  Speaker 2: she was a bit theregy before and away. I don't
• 48:13
  Speaker 2: know that it was an ideo why, But now she's
• 48:16
  Speaker 2: eaten a bit more meat. She's drinking a lot more water.
• 48:20
  Speaker 2: She needs that, and she's she's in a routine because
• 48:23
  Speaker 2: of being in school as well. You know, they have
• 48:26
  Speaker 2: their she has breakasts at home and then she has
• 48:28
  Speaker 2: them more in snacks than they have lunch. Then they
• 48:30
  Speaker 2: have their afternoon snack, which has dinner, so she is
• 48:33
  Speaker 2: in more of a routine, and Chinese are very health contrast,
• 48:37
  Speaker 2: especially for babies and with digestive health. Never let anybody
• 48:42
  Speaker 2: drink cold water. God for bed. You drink a cold drink,
• 48:45
  Speaker 2: your digestive system goes into shock. Actually that is quite true.
• 48:51
  Speaker 2: A warmer drink is better for your digestive system than
• 48:53
  Speaker 2: a cold drink. Yeah, so they drink warm water. They
• 48:57
  Speaker 2: don't drink cold water. I could never because it makes
• 49:00
  Speaker 2: me think I'm drinking bath water. Not for me. I
• 49:05
  Speaker 2: don't even drink to your coffee either. I'm not a
• 49:07
  Speaker 2: hot drinker at all. But for her, she'll happily drink
• 49:11
  Speaker 2: warm water, which is great because that helps it. It
• 49:14
  Speaker 2: really does help out, which fab So yeah, that's that's
• 49:19
  Speaker 2: pretty much the story. So yeah, not a textbook case.
• 49:24
  Speaker 2: She was fine until she was seven months. Conservation here
• 49:27
  Speaker 2: and there and then positive hair shpruings fantastic.
• 49:31
  Speaker 3: Well, thank you, thank you so much for sharing.
• 49:35
  Speaker 1: And just just before we wrap up, I know you've
• 49:37
  Speaker 1: you've mentioned a little bit about what you hope and
• 49:41
  Speaker 1: expect for the next few months for her socially, but medically,
• 49:50
  Speaker 1: where where are we sort of in the near future.
• 49:54
  Speaker 2: Or medically we are a WhatsApp message away from the surgeon. Okay,
• 50:00
  Speaker 2: she does any message every now and again, or house
• 50:03
  Speaker 2: things going. I sent her and updated a couple of
• 50:06
  Speaker 2: pictures and stuff the other day, just being like, this
• 50:09
  Speaker 2: is what's going on, and she's like, keep going as
• 50:12
  Speaker 2: you're going. She's like, whenever you're in Jamel, see you
• 50:16
  Speaker 2: for right now. I don't feel like there's any complaints.
• 50:18
  Speaker 2: She's not in any sort of pain. There's not many
• 50:22
  Speaker 2: days where she doesn't go, you know. I think we
• 50:26
  Speaker 2: went once she hadn't gone for two days, and I
• 50:28
  Speaker 2: was like, if we're day three, I'm gonna have to
• 50:30
  Speaker 2: message the snurgeant. But actually it was just one of
• 50:34
  Speaker 2: those things and then she went. She was fine, and
• 50:37
  Speaker 2: there's okay, and she was still eating and she was
• 50:39
  Speaker 2: still drinking and she was fine. She now a temperature,
• 50:41
  Speaker 2: you know all that stuff. So yeah, medically it's the
• 50:48
  Speaker 2: surgeon will see us whenever we are within country, and
• 50:51
  Speaker 2: we are just WhatsApp message away if needs be, which
• 50:55
  Speaker 2: I know probably isn't the thing in the UK either.
• 50:59
  Speaker 2: And then all of a sudden, those doctors that will
• 51:03
  Speaker 2: do their absolute best, but they run off their feet, right,
• 51:08
  Speaker 2: of course.
• 51:09
  Speaker 3: Yeah, there's not.
• 51:09
  Speaker 1: It's not a it's not a blame thing on anybody's part.
• 51:13
  Speaker 1: It's just it's just the situation is the way it
• 51:15
  Speaker 1: is at the moment, I believe exactly exactly.
• 51:18
  Speaker 2: So yeah, I would say medically, that's where we are.
• 51:21
  Speaker 2: We know we've got to just keep her growing, and
• 51:25
  Speaker 2: that's you know, where we are now in twelve to
• 51:27
  Speaker 2: eighteen month clause officially with some eighteen to twenty four
• 51:32
  Speaker 2: she is on on the on the right track with that.
• 51:35
  Speaker 2: But as I said, she was never going to be
• 51:37
  Speaker 2: six foot two, like she was always going to beat
• 51:38
  Speaker 2: it pitty. She's got the tiniest feet, like she's size
• 51:42
  Speaker 2: three fourth where she should be like a six seven,
• 51:45
  Speaker 2: like all of those things. She's got like these tiny
• 51:47
  Speaker 2: feet and she is on the smaller side. But she's
• 51:51
  Speaker 2: healthy now. She doesn't have any medical reason of why
• 51:57
  Speaker 2: she's smaller. You know, that's that's thing.
• 52:01
  Speaker 1: So yeah, fantastic, Well, thank you, thank you so much
• 52:06
  Speaker 1: for doing this, because I know it's getting on quite
• 52:08
  Speaker 1: late where you are, but again, oh fantastic. I will
• 52:16
  Speaker 1: obviously end on this and just sort of wish you
• 52:19
  Speaker 1: your family and your daughter all the very very best
• 52:24
  Speaker 1: for the future and hopefully keep gaining weight, keep cracking
• 52:28
  Speaker 1: on with everything, because yeah, she's been through an awful lot,
• 52:31
  Speaker 1: so I really.
• 52:32
  Speaker 2: Harassed she has. And it was again one of the
• 52:35
  Speaker 2: decisions that we made to do it rather than wait
• 52:38
  Speaker 2: and see what happens or you know, wait for I
• 52:40
  Speaker 2: fear and blah blah blah. Was medically, of course, it
• 52:44
  Speaker 2: was on her body went through so much and I'm
• 52:46
  Speaker 2: sure in her little brain bought I've always going on
• 52:48
  Speaker 2: was going on, you know, but she's never going to
• 52:52
  Speaker 2: remember any of this. She's got her scars, but they'd
• 52:55
  Speaker 2: also are already fading and changing. And like if she
• 53:00
  Speaker 2: asks us one day of like what was this, of
• 53:03
  Speaker 2: course we'll tell her what she went through. She needs
• 53:05
  Speaker 2: to know what she went through and hide that from her.
• 53:09
  Speaker 2: And also why should you hide it from us? Nothing
• 53:11
  Speaker 2: to be ashamed of. And also you know, she could
• 53:14
  Speaker 2: be in school and somebody's got a colostomy back, right,
• 53:19
  Speaker 2: she could be their friend and say, oh, I had
• 53:20
  Speaker 2: that once, you know, like, yeah, all of these things
• 53:25
  Speaker 2: that you just don't know what will happen in the future.
• 53:27
  Speaker 2: And it's another reason, not selfishly, of why we help
• 53:32
  Speaker 2: the eng O the way we did. I don't know
• 53:34
  Speaker 2: when I was stoma one day. Never know, right, they're
• 53:39
  Speaker 2: open for it.
• 53:40
  Speaker 3: No, no, I'm not wishing it on you.
• 53:43
  Speaker 2: Yeah, that's what I mean. You're not opening for it,
• 53:44
  Speaker 2: you're not putting it out there. But you don't know
• 53:48
  Speaker 2: if your partner, your husband, your wife, your child, your brother,
• 53:51
  Speaker 2: your sister, next door, neighbor. You don't know. So you know,
• 53:56
  Speaker 2: support these things even if it doesn't direct affective right now,
• 54:00
  Speaker 2: you know, I don't know. I was easy to said,
• 54:02
  Speaker 2: and then you can't help everyone. You can't. There's tom
• 54:04
  Speaker 2: shit to that, but it is one of the things
• 54:09
  Speaker 2: that once it is in your vicinity, try and help
• 54:11
  Speaker 2: that community. And that was why I wanted to do this,
• 54:15
  Speaker 2: to say, look, it's not all just this way it happens.
• 54:19
  Speaker 2: And if you think your child has a problem, keep
• 54:22
  Speaker 2: going with it. Keep going back, every man, keep going
• 54:25
  Speaker 2: back when you think, do you know what, No, this
• 54:27
  Speaker 2: isn't right. That mother's instinct is a thing right here,
• 54:31
  Speaker 2: and instinct is a thing. Yeah, and even for yourself,
• 54:37
  Speaker 2: your own half, nobody knows your body the way you do.
• 54:40
  Speaker 2: So even if you listen to this now and you're
• 54:41
  Speaker 2: like a forty year old and you think, do you
• 54:43
  Speaker 2: know what I have problems or my life put in?
• 54:47
  Speaker 2: Should I go and see someone?
• 54:49
  Speaker 3: Yeah, you know, you do never know.
• 54:53
  Speaker 1: I mean, and people always they say to me or oh,
• 54:56
  Speaker 1: you're always diagnosed in the first few weeks an you know,
• 54:58
  Speaker 1: and I'm like, well, I mean I had somebody on
• 55:01
  Speaker 1: who was diagnosed at nineteen years old, you know, so
• 55:05
  Speaker 1: everybody is different. And I would always echo that and
• 55:09
  Speaker 1: always advocate for mother's instinct. I mean, it saved my life,
• 55:12
  Speaker 1: so it's it's something I will forever advocate for because
• 55:20
  Speaker 1: I think that's so so important.
• 55:23
  Speaker 2: Yeah, of course, yep.
• 55:24
  Speaker 1: But Matt, thank you so so much for coming on.
• 55:28
  Speaker 1: Welcome and as I said, I wish you, wish you
• 55:30
  Speaker 1: the very best of the future. Thank you, Thank you
• 55:36
  Speaker 1: for listening and being part of this growing community. If
• 55:39
  Speaker 1: you have enjoyed the episode, don't forget to subscribe, leave
• 55:42
  Speaker 1: a review and share it with someone who might need it.
• 55:45
  Speaker 1: You can connect with us on social media via Instagram, Facebook,
• 55:49
  Speaker 1: and TikTok under the name Tom's Hirshprung's Podcast. See you
• 55:53
  Speaker 1: next week.