A family is hit with one life-altering diagnosis for their unborn son. After battling back in his early years, Haedyn was hit with a DOUBLE-whammy. A second devastating diagnosis. But, thanks to Children's Nebraska-this story has an amazing ending!
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
I don't want to make women who are going in
for ultrasounds paranoid about this, but I don't anticipate you
were expecting anything out of the ordinary. Telling us about
that day, Well, we.
Speaker 2 (00:10):
Went in for my first initial ultrasound, and we knew
something was They told us that they couldn't get pictures
of his heart. Kind of got us worried, and they
told us that we would have to reschedule and come
back within a few days. They were telling us that
he just needed to move, is what they were saying.
(00:31):
So that's what we thought was going to happen. So
we went home and a few days later I went
in because we thought he just needed to move.
Speaker 3 (00:40):
So James went.
Speaker 2 (00:41):
To work and we went in and they did another
ultrasound and they discovered that his left side of his
heart was under completely underdeveloped.
Speaker 3 (00:54):
And I was by myself. My husband wasn't there.
Speaker 2 (01:01):
It's okay, and I just didn't know how to take it.
And the doctor at the time was trying to convince
me that hed And would not have a good life
and that maybe I should consider terminating. And our other
doctor got us in contact with Children's Hospital, and it
(01:22):
was the heart surgeon that helped us. I knew I
didn't want to terminate it, and he helped me. He
convinced us otherwise that these kids are worth it, and
he knew procedures and stuff that he could do with
his heart surgery.
Speaker 3 (01:35):
To give him a decent life.
Speaker 2 (01:37):
And it was after that, and then we got to
meet the whole team at Children's then and they became
family at that point.
Speaker 1 (01:45):
How hard of a phone call was that to make
to your husband?
Speaker 3 (01:49):
It was hard.
Speaker 2 (01:50):
I went out to the parking garage to do it.
I had lost it and I had to call and
James was on the road he traveled, and it was
not something pleasant that he wanted to get on the.
Speaker 3 (02:02):
Side of the road.
Speaker 2 (02:03):
He pulled over and I had to tell him that
our son, his left side of his heart was not
there and he would need surgeries and it was just
gonna be a long, possibly hard life. We didn't know,
but it was hard. It was hard to get that
information by myself without my husband there. But I just
wish they would have indicated, you know, sooner, or that
(02:26):
maybe there was an issue so he wouldn't have gone
to work that day.
Speaker 3 (02:29):
But they didn't.
Speaker 1 (02:31):
James, let's talk about your end of it. The day
you got that phone call, you saw your wife's number
up here. Walk us through that.
Speaker 4 (02:40):
I was hoping for good news. Definitely a life changing moment.
I tried to comfort.
Speaker 5 (02:53):
Her and.
Speaker 4 (02:58):
We decided that I would come home and she had
to go back to work for a little bit. And
after I got off the phone with her, pretty much
lost it right there in a parking lot. Contacted my
(03:18):
boss at the time, explain to him what was going
on and didn't know what the future held.
Speaker 1 (03:27):
After you talked with a surgeon, tell us how you
felt once you got details and you heard that this
procedure has been done multiple multiple times. Did that help?
Speaker 3 (03:39):
Yes.
Speaker 2 (03:41):
The heart surgeon at the time was doctor Hamill's who
we had.
Speaker 3 (03:45):
He was amazing when we first went in.
Speaker 2 (03:47):
He gave us a lot of information went right over
our head, but he was also one of those doctors
he could my terms, called dumb it down to us
and kind of give us more indication. But he really
I felt better about it after he talked to us
and he explained the three scheduled heart surgeries that they
(04:08):
could have, and his biggest advice to us was don't
go home and google it. You know everybody's heart story
is different, and there's truth to that. He said, more
people hear the negatives than the positives, and that's true,
and that's why we like to get Hayden's story out there.
Speaker 3 (04:26):
I mean, it hasn't been easy, but.
Speaker 2 (04:30):
I feel like he's more of the positive side, and
I want people to have faith and that these surgeons
know what they're doing. This heart team at Children's is amazing.
We could not be here today without them their family
to us.
Speaker 1 (04:42):
Be honest, you googled it, didn't you I did.
Speaker 3 (04:45):
I did google it. I google everything, but I did
google it.
Speaker 2 (04:49):
But I also tried to listen to what he said though,
and not taken. Once people knew about the condition and
they knew that your child had it, they did. They
wanted to tell you a lot of that negative stuff
to where it brought you down. But reading about it
and then having him help us and even our cardiologists
is all that they really made us see differently that
(05:13):
this could be an okay process.
Speaker 3 (05:15):
It's gonna be hard, but it can be okay too.
Speaker 1 (05:18):
And Hayden had his first surgery when he was three
days old. Dad, You're not only caring free wife, but
you have to hand your son over to surgeons at
three days. Tell us about that day.
Speaker 4 (05:33):
Very upsetting. Didn't know what to expect. We went into
the room. He was actually I believe he was supposed
to be born in Lincoln and then they were going
to life flight him, and doctor Hamil put his foot
(05:54):
down and said, no, we're having him here, not taking
the risk of life fight him. So sorry. So I
believe he was the first child to be born at
Methodist in close to twenty years. So they had the surgery,
(06:17):
the C section over at Methodist, and it was kind
of a whirlwind because we were in one room. They
had a glassroom joined to it, and oh god, there
was countless nurses and doctors waiting for him in that room.
They pulled him out, let him, let us visually look
(06:38):
at him, and then rushed him over into that room.
And the nurse came back over probably twenty minutes later,
said he's doing good, he's stable. And she said, honestly,
if we didn't previously know, we wouldn't know. Because he
came out screaming and a few other things he did
(07:03):
that the nurses had to go home and change their
clothes before they went back to back to work. But
everything went as they planned and doctor Hammill was happy
with everything. And I guess the hardest part of that
was she didn't actually get to hold him for it
(07:24):
felt like a week anyway, And just seeing after he
had surgery. I mean, you're talking they did surgery on
a heart that was half the size of an acorn,
which in my mind is completely amazing that that's even possible.
(07:44):
And just seeing him with all the wires and tubes
and this his chest bead cut open. It's horrible as
(08:05):
a father go through something like that and not being
able to do anything for them.
Speaker 1 (08:19):
And then he had to repeat a surgery at three months.
But tell us how you leaned on each other during
this time.
Speaker 3 (08:29):
That was a hard time.
Speaker 2 (08:30):
The nice thing about James and I is were opposes,
but where I come down, he picks me up and
vice versa. And we're really good at working with each
other on that. We have a son, an older son
too at home and try that he.
Speaker 3 (08:46):
Helps kind of keep us going.
Speaker 2 (08:50):
Where one comparent hating one comparent, Emmitt and we just
kind of worked with each other that way. I mean,
you had to find you ground with each other and
understand each other and Wes James's heart. You know, I'm
coming out of just having a kid and a kid
that went into surgery, and my mind wasn't always great.
I struggled with a lot of stuff and he had
(09:10):
to be there and be that rock for us.
Speaker 3 (09:12):
At that time.
Speaker 2 (09:13):
He just was and we just learned a new way
of living together. If anything, I think it brought us
closer together.
Speaker 4 (09:21):
She doesn't take enough credit. I couldn't as a father.
I know it was hard. I couldn't even imagine as
a mother. And a huge thing is the support system
that we had with family and friends, or have with
family and friends as well. That had helped a lot,
you know, dinners giving us coming to watch the kids
(09:42):
when they could, to give us time. You need your circle.
You can't do it without your circle.
Speaker 1 (09:52):
So add to this the fact that I wanted. About
three years old, Hayden also had a skin disease developed
called Iawasaki disease. I bet you guys felt like, wow,
what have we done here?
Speaker 2 (10:05):
Yeah, that Kawasaki disease was something I couldn't even imagine.
He developed a skin It started with a skin rash
and fever, and the rash just kept changing it worse,
and I are pediatrician at the time thought it was
like ham foot mouths whatever. We went back and forth
with her and I googled it.
Speaker 3 (10:27):
And what I was seeing on there is all.
Speaker 2 (10:30):
Of his symptoms because he was just getting agitated and
went eat and it matched Kawasaki. So we finally brought
him to Children's and kind of put our foot down
because they too had never seen it recently here, and
they called the infectuous disease people in and they confirmed
that he had Kawasaki disease. And luckily you have like
a ten day window to get treatment, otherwise a lot
(10:52):
of other complications could happen, and we got him just
short of that. We got treatment. They saved his life
and stuff. But it took several months after that for
him to recover. He lost all of his hair, his eyebrows,
his fingernails, his toenails, and his skin peeled like worse
than a summer. And I mean he would be sitting
(11:14):
on a couch and there would be skin where he.
Speaker 3 (11:16):
Had been sitting. It was so bad.
Speaker 2 (11:19):
But it took I mean now his hair is really
starting to come in. I mean he's eight now. So
it took several years even for like his hair to start,
his eyebrows to start coming back in and everything.
Speaker 3 (11:32):
But it was tough.
Speaker 1 (11:33):
Dad, How did you tell the three year old to
hang in there when he's going through all that?
Speaker 4 (11:40):
It's hard. He's tougher than I ever thought. I thought
I was. The kid's been through a lot, and I
couldn't imagine the pain that he went through with the
Kawasaki's disease. I met a thirty thirty four year old
(12:03):
man that had it, and he said he couldn't couldn't
even put the sheets on his skin because it just
hurt so bad. Hearing that from a thirty four four
year old man couldn't even imagine. Well, my three year
(12:25):
old was going through rule and we found that he couldn't.
We couldn't figure out why he wouldn't eat, and found
out that his face had swelled so bad that he
was every time he would try to eat, he was
actually chewing on his cheeks on the hand side. So that's
(12:47):
why he wouldn't eat, because he swelled up so bad
that he the skin thing like Jamie talked about, he
molted his skin like a snake.
Speaker 1 (12:58):
Updates are listeners onwhare Hayden is today.
Speaker 2 (13:02):
Well ever since his third surgery that he had a
couple of years ago. He's an honre eight year old
boy and he's doing good. He's in school, he's in
the second grade.
Speaker 3 (13:12):
He's loving life.
Speaker 2 (13:15):
Wrestles with his brother around the house. He loves outdoors
right and his four wheeler, doing all that stuff and
just being a boy, which is nice. It's nice for
him to actually just live life for once. And then
it's nice for us as a family. We've been able
to go do more things now with him than we
ever used to. But yeah, that's he's just an here,
(13:40):
eight year old boy right now.
Speaker 1 (13:44):
Dad, I mean, looking back overall that Hayden's been through
and you see him, now, what are your thoughts when
you just look out there and seeing your son running
around and wrestling around and being a boy.
Speaker 4 (13:57):
At times, it's challenging, you know, all eight year olds are.
But we were so used to him being slower because
of his oxygen levels and you know, waiting on him.
And now from his third surgery, he has closer to
(14:20):
normal oxygen levels than he you know, than a normal kid,
and his energy level has went through the roof compared
to so his last surgery was a blessing and a
curse all at once, you know, because his goal he
had it the third of October, and his goal he
(14:42):
was going trick or treating. So and his cardiologist Chris
cars On absolutely wonderful bad got him within two days
after his surgery, just walking the halls Hayden. Hayden is
(15:04):
a foodie. He loves food and so he had been
watching a video on sushi. So he was bound and
determined he needed to try sushi. So we told doctor
kerrz on this. So doctor k Kurzan said, you know,
(15:26):
you do your laps up and down the hall and
I'll bring you in sushi. So his determination to have
sushi with doctor Chris was he wasn't doing lap, he
wasn't going up and down the hall. He did laps
around the whole hospital for multiple times, multiple days. So
(15:51):
he was gonna get that sushi with doctor Chris. Well,
doctor Chris wasn't. He ended up having something, wasn't able
to have sushi with him. So doctor Chris called his
wife and had sushi said to his room, and he
(16:14):
didn't end up liking it. But it just shows you
how determined that kid is when he gets his mindset
on something.
Speaker 1 (16:27):
I think you can also see it says a lot
about the kind of people that are here at Children's.
Let's just pretend that you have a thank you note
here and you're going to write it to the doctors,
the nurses, the staff here at Children's. What might be
on that thank you? Know?
Speaker 4 (16:45):
Well, for our.
Speaker 2 (16:47):
Nurse Anne and doctor Chris is what we call him,
their family, and I want to thank them for taking
care of my boy and.
Speaker 3 (17:06):
Given him the life that he has. We can't do
it as parents.
Speaker 2 (17:12):
It takes a team, and it takes that cardiology team
to help us, and they have been there. We've had
doctor christince Hayden has been little, and he is family.
When I say family, he's like an uncle. We just
share everything with doctor Chris. We send pictures to him
of all his milestones, because not only are we proud
(17:33):
of his milestones, but the cardiology team needs to realize
that they helped make those milestones too, and I feel
like they need to enjoy it and see these kids
that I don't feel like they get as much praise
and stuff with what they do, and so I just
want to thank them from always being there and you know,
I have bad days, and one thing that I've been
(17:56):
thankful for as a mom is.
Speaker 3 (17:59):
Doctor Chris and even Anne have been great at.
Speaker 2 (18:04):
They just kind of get me, They kind of know
my temperament, and they learned to work with that. That
relationship that we've built for the last eight years has
just been wonderful. And I'd be lost without them. I
mean we would, and haydn't. I truly don't think Hayden
would be here without them, the surgeons, all that, We've
been very blessed to have, the staff at Children's that we've.
Speaker 1 (18:25):
Had, anything you want to add to that, People.
Speaker 4 (18:30):
Don't People don't realize how lucky we are to have
a facility such as Children's in a close proximity of us.
We went into this with the mindset that we, you know,
(18:55):
had the most horrible case possible in Children's Hospital. Changed
my son's life, change changed our life. Yeah. Even you
(19:20):
know the times that which we've our oldest son, we've
always kept him in on what's going on. Every night,
you know, when Hayden was in the hospital, Emmett night
would be up here as much as we could. I
would take him home, take him to school. I'd go
(19:43):
to work, we'd go home, shower, come back up here
and spend as much time as we possibly could, nights, weekends, everything,
And every time Emmett was here, the nurses, the doctors
always included him, took him down to the let him play,
let him do stuff, and just it's a family place
(20:07):
and they take care of the whole family. And there's
always always somebody. Like I was saying, we came in
thinking we had the worst case possible, and there's always
someone in the next room, down the hall that has
(20:28):
worse than what you have. So it helped us put
a lot of things in perspective, not only with our son,
but in life of wants, needs and who you're around
and who you want to be around. And I mean,
we were lucky enough our son got to go home.
(20:56):
I actually what we were in children's ran into two
previous classmates that I hadn't seen for twenty five plus years.
Speaker 5 (21:17):
And neither one of their children got cool. So there's this.
Speaker 4 (21:26):
Is a wonderful facility and I can't say enough about
it and about the people, the staff, the surgeons, just
everyone included in, even you guys at KAT one O
three helping out with this stuff. It's amazing. It's amazing. Community.
Speaker 1 (21:49):
We have a lot of people listening right now to
your story and they haven't decided whether or not to
contribute to our radiothon. What would you say to them
to encourage them to maybe reconsider giving during our radiothon
to help children's.
Speaker 2 (22:04):
I would ask that everybody just please try to donate
because this money helps so much. It helps not only
the kids, like my husband had said, it helps with
us as parents.
Speaker 3 (22:17):
It helps the doctors. It gives them so much to
take care of these kids. I mean, we need it.
Speaker 2 (22:23):
We need all these new advances that are coming out,
the new equipment and stuff that will help keep these
kids here longer and give them a shot at life.
A lot of these kids, we know they have a
short life, but with everything that is coming out, like
advancements in medicine and everything, this this money will help
them learn about this stuff and go ahead and buy
(22:45):
all this stuff to help with all that, and these
kids may live longer than they've ever lived before. And
this gives them a shot in their life.
I don't want to make women who are going in
for ultrasounds paranoid about this, but I don't anticipate you
were expecting anything out of the ordinary. Telling us about
that day, Well, we.
Speaker 2 (00:10):
Went in for my first initial ultrasound, and we knew
something was They told us that they couldn't get pictures
of his heart. Kind of got us worried, and they
told us that we would have to reschedule and come
back within a few days. They were telling us that
he just needed to move, is what they were saying.
(00:31):
So that's what we thought was going to happen. So
we went home and a few days later I went
in because we thought he just needed to move.
Speaker 3 (00:40):
So James went.
Speaker 2 (00:41):
To work and we went in and they did another
ultrasound and they discovered that his left side of his
heart was under completely underdeveloped.
Speaker 3 (00:54):
And I was by myself. My husband wasn't there.
Speaker 2 (01:01):
It's okay, and I just didn't know how to take it.
And the doctor at the time was trying to convince
me that hed And would not have a good life
and that maybe I should consider terminating. And our other
doctor got us in contact with Children's Hospital, and it
(01:22):
was the heart surgeon that helped us. I knew I
didn't want to terminate it, and he helped me. He
convinced us otherwise that these kids are worth it, and
he knew procedures and stuff that he could do with
his heart surgery.
Speaker 3 (01:35):
To give him a decent life.
Speaker 2 (01:37):
And it was after that, and then we got to
meet the whole team at Children's then and they became
family at that point.
Speaker 1 (01:45):
How hard of a phone call was that to make
to your husband?
Speaker 3 (01:49):
It was hard.
Speaker 2 (01:50):
I went out to the parking garage to do it.
I had lost it and I had to call and
James was on the road he traveled, and it was
not something pleasant that he wanted to get on the.
Speaker 3 (02:02):
Side of the road.
Speaker 2 (02:03):
He pulled over and I had to tell him that
our son, his left side of his heart was not
there and he would need surgeries and it was just
gonna be a long, possibly hard life. We didn't know,
but it was hard. It was hard to get that
information by myself without my husband there. But I just
wish they would have indicated, you know, sooner, or that
(02:26):
maybe there was an issue so he wouldn't have gone
to work that day.
Speaker 3 (02:29):
But they didn't.
Speaker 1 (02:31):
James, let's talk about your end of it. The day
you got that phone call, you saw your wife's number
up here. Walk us through that.
Speaker 4 (02:40):
I was hoping for good news. Definitely a life changing moment.
I tried to comfort.
Speaker 5 (02:53):
Her and.
Speaker 4 (02:58):
We decided that I would come home and she had
to go back to work for a little bit. And
after I got off the phone with her, pretty much
lost it right there in a parking lot. Contacted my
(03:18):
boss at the time, explain to him what was going
on and didn't know what the future held.
Speaker 1 (03:27):
After you talked with a surgeon, tell us how you
felt once you got details and you heard that this
procedure has been done multiple multiple times. Did that help?
Speaker 3 (03:39):
Yes.
Speaker 2 (03:41):
The heart surgeon at the time was doctor Hamill's who
we had.
Speaker 3 (03:45):
He was amazing when we first went in.
Speaker 2 (03:47):
He gave us a lot of information went right over
our head, but he was also one of those doctors
he could my terms, called dumb it down to us
and kind of give us more indication. But he really
I felt better about it after he talked to us
and he explained the three scheduled heart surgeries that they
(04:08):
could have, and his biggest advice to us was don't
go home and google it. You know everybody's heart story
is different, and there's truth to that. He said, more
people hear the negatives than the positives, and that's true,
and that's why we like to get Hayden's story out there.
Speaker 3 (04:26):
I mean, it hasn't been easy, but.
Speaker 2 (04:30):
I feel like he's more of the positive side, and
I want people to have faith and that these surgeons
know what they're doing. This heart team at Children's is amazing.
We could not be here today without them their family
to us.
Speaker 1 (04:42):
Be honest, you googled it, didn't you I did.
Speaker 3 (04:45):
I did google it. I google everything, but I did
google it.
Speaker 2 (04:49):
But I also tried to listen to what he said though,
and not taken. Once people knew about the condition and
they knew that your child had it, they did. They
wanted to tell you a lot of that negative stuff
to where it brought you down. But reading about it
and then having him help us and even our cardiologists
is all that they really made us see differently that
(05:13):
this could be an okay process.
Speaker 3 (05:15):
It's gonna be hard, but it can be okay too.
Speaker 1 (05:18):
And Hayden had his first surgery when he was three
days old. Dad, You're not only caring free wife, but
you have to hand your son over to surgeons at
three days. Tell us about that day.
Speaker 4 (05:33):
Very upsetting. Didn't know what to expect. We went into
the room. He was actually I believe he was supposed
to be born in Lincoln and then they were going
to life flight him, and doctor Hamil put his foot
(05:54):
down and said, no, we're having him here, not taking
the risk of life fight him. So sorry. So I
believe he was the first child to be born at
Methodist in close to twenty years. So they had the surgery,
(06:17):
the C section over at Methodist, and it was kind
of a whirlwind because we were in one room. They
had a glassroom joined to it, and oh god, there
was countless nurses and doctors waiting for him in that room.
They pulled him out, let him, let us visually look
(06:38):
at him, and then rushed him over into that room.
And the nurse came back over probably twenty minutes later,
said he's doing good, he's stable. And she said, honestly,
if we didn't previously know, we wouldn't know. Because he
came out screaming and a few other things he did
(07:03):
that the nurses had to go home and change their
clothes before they went back to back to work. But
everything went as they planned and doctor Hammill was happy
with everything. And I guess the hardest part of that
was she didn't actually get to hold him for it
(07:24):
felt like a week anyway, And just seeing after he
had surgery. I mean, you're talking they did surgery on
a heart that was half the size of an acorn,
which in my mind is completely amazing that that's even possible.
(07:44):
And just seeing him with all the wires and tubes
and this his chest bead cut open. It's horrible as
(08:05):
a father go through something like that and not being
able to do anything for them.
Speaker 1 (08:19):
And then he had to repeat a surgery at three months.
But tell us how you leaned on each other during
this time.
Speaker 3 (08:29):
That was a hard time.
Speaker 2 (08:30):
The nice thing about James and I is were opposes,
but where I come down, he picks me up and
vice versa. And we're really good at working with each
other on that. We have a son, an older son
too at home and try that he.
Speaker 3 (08:46):
Helps kind of keep us going.
Speaker 2 (08:50):
Where one comparent hating one comparent, Emmitt and we just
kind of worked with each other that way. I mean,
you had to find you ground with each other and
understand each other and Wes James's heart. You know, I'm
coming out of just having a kid and a kid
that went into surgery, and my mind wasn't always great.
I struggled with a lot of stuff and he had
(09:10):
to be there and be that rock for us.
Speaker 3 (09:12):
At that time.
Speaker 2 (09:13):
He just was and we just learned a new way
of living together. If anything, I think it brought us
closer together.
Speaker 4 (09:21):
She doesn't take enough credit. I couldn't as a father.
I know it was hard. I couldn't even imagine as
a mother. And a huge thing is the support system
that we had with family and friends, or have with
family and friends as well. That had helped a lot,
you know, dinners giving us coming to watch the kids
(09:42):
when they could, to give us time. You need your circle.
You can't do it without your circle.
Speaker 1 (09:52):
So add to this the fact that I wanted. About
three years old, Hayden also had a skin disease developed
called Iawasaki disease. I bet you guys felt like, wow,
what have we done here?
Speaker 2 (10:05):
Yeah, that Kawasaki disease was something I couldn't even imagine.
He developed a skin It started with a skin rash
and fever, and the rash just kept changing it worse,
and I are pediatrician at the time thought it was
like ham foot mouths whatever. We went back and forth
with her and I googled it.
Speaker 3 (10:27):
And what I was seeing on there is all.
Speaker 2 (10:30):
Of his symptoms because he was just getting agitated and
went eat and it matched Kawasaki. So we finally brought
him to Children's and kind of put our foot down
because they too had never seen it recently here, and
they called the infectuous disease people in and they confirmed
that he had Kawasaki disease. And luckily you have like
a ten day window to get treatment, otherwise a lot
(10:52):
of other complications could happen, and we got him just
short of that. We got treatment. They saved his life
and stuff. But it took several months after that for
him to recover. He lost all of his hair, his eyebrows,
his fingernails, his toenails, and his skin peeled like worse
than a summer. And I mean he would be sitting
(11:14):
on a couch and there would be skin where he.
Speaker 3 (11:16):
Had been sitting. It was so bad.
Speaker 2 (11:19):
But it took I mean now his hair is really
starting to come in. I mean he's eight now. So
it took several years even for like his hair to start,
his eyebrows to start coming back in and everything.
Speaker 3 (11:32):
But it was tough.
Speaker 1 (11:33):
Dad, How did you tell the three year old to
hang in there when he's going through all that?
Speaker 4 (11:40):
It's hard. He's tougher than I ever thought. I thought
I was. The kid's been through a lot, and I
couldn't imagine the pain that he went through with the
Kawasaki's disease. I met a thirty thirty four year old
(12:03):
man that had it, and he said he couldn't couldn't
even put the sheets on his skin because it just
hurt so bad. Hearing that from a thirty four four
year old man couldn't even imagine. Well, my three year
(12:25):
old was going through rule and we found that he couldn't.
We couldn't figure out why he wouldn't eat, and found
out that his face had swelled so bad that he
was every time he would try to eat, he was
actually chewing on his cheeks on the hand side. So that's
(12:47):
why he wouldn't eat, because he swelled up so bad
that he the skin thing like Jamie talked about, he
molted his skin like a snake.
Speaker 1 (12:58):
Updates are listeners onwhare Hayden is today.
Speaker 2 (13:02):
Well ever since his third surgery that he had a
couple of years ago. He's an honre eight year old
boy and he's doing good. He's in school, he's in
the second grade.
Speaker 3 (13:12):
He's loving life.
Speaker 2 (13:15):
Wrestles with his brother around the house. He loves outdoors
right and his four wheeler, doing all that stuff and
just being a boy, which is nice. It's nice for
him to actually just live life for once. And then
it's nice for us as a family. We've been able
to go do more things now with him than we
ever used to. But yeah, that's he's just an here,
(13:40):
eight year old boy right now.
Speaker 1 (13:44):
Dad, I mean, looking back overall that Hayden's been through
and you see him, now, what are your thoughts when
you just look out there and seeing your son running
around and wrestling around and being a boy.
Speaker 4 (13:57):
At times, it's challenging, you know, all eight year olds are.
But we were so used to him being slower because
of his oxygen levels and you know, waiting on him.
And now from his third surgery, he has closer to
(14:20):
normal oxygen levels than he you know, than a normal kid,
and his energy level has went through the roof compared
to so his last surgery was a blessing and a
curse all at once, you know, because his goal he
had it the third of October, and his goal he
(14:42):
was going trick or treating. So and his cardiologist Chris
cars On absolutely wonderful bad got him within two days
after his surgery, just walking the halls Hayden. Hayden is
(15:04):
a foodie. He loves food and so he had been
watching a video on sushi. So he was bound and
determined he needed to try sushi. So we told doctor
kerrz on this. So doctor k Kurzan said, you know,
(15:26):
you do your laps up and down the hall and
I'll bring you in sushi. So his determination to have
sushi with doctor Chris was he wasn't doing lap, he
wasn't going up and down the hall. He did laps
around the whole hospital for multiple times, multiple days. So
(15:51):
he was gonna get that sushi with doctor Chris. Well,
doctor Chris wasn't. He ended up having something, wasn't able
to have sushi with him. So doctor Chris called his
wife and had sushi said to his room, and he
(16:14):
didn't end up liking it. But it just shows you
how determined that kid is when he gets his mindset
on something.
Speaker 1 (16:27):
I think you can also see it says a lot
about the kind of people that are here at Children's.
Let's just pretend that you have a thank you note
here and you're going to write it to the doctors,
the nurses, the staff here at Children's. What might be
on that thank you? Know?
Speaker 4 (16:45):
Well, for our.
Speaker 2 (16:47):
Nurse Anne and doctor Chris is what we call him,
their family, and I want to thank them for taking
care of my boy and.
Speaker 3 (17:06):
Given him the life that he has. We can't do
it as parents.
Speaker 2 (17:12):
It takes a team, and it takes that cardiology team
to help us, and they have been there. We've had
doctor christince Hayden has been little, and he is family.
When I say family, he's like an uncle. We just
share everything with doctor Chris. We send pictures to him
of all his milestones, because not only are we proud
(17:33):
of his milestones, but the cardiology team needs to realize
that they helped make those milestones too, and I feel
like they need to enjoy it and see these kids
that I don't feel like they get as much praise
and stuff with what they do, and so I just
want to thank them from always being there and you know,
I have bad days, and one thing that I've been
(17:56):
thankful for as a mom is.
Speaker 3 (17:59):
Doctor Chris and even Anne have been great at.
Speaker 2 (18:04):
They just kind of get me, They kind of know
my temperament, and they learned to work with that. That
relationship that we've built for the last eight years has
just been wonderful. And I'd be lost without them. I
mean we would, and haydn't. I truly don't think Hayden
would be here without them, the surgeons, all that, We've
been very blessed to have, the staff at Children's that we've.
Speaker 1 (18:25):
Had, anything you want to add to that, People.
Speaker 4 (18:30):
Don't People don't realize how lucky we are to have
a facility such as Children's in a close proximity of us.
We went into this with the mindset that we, you know,
(18:55):
had the most horrible case possible in Children's Hospital. Changed
my son's life, change changed our life. Yeah. Even you
(19:20):
know the times that which we've our oldest son, we've
always kept him in on what's going on. Every night,
you know, when Hayden was in the hospital, Emmett night
would be up here as much as we could. I
would take him home, take him to school. I'd go
(19:43):
to work, we'd go home, shower, come back up here
and spend as much time as we possibly could, nights, weekends, everything,
And every time Emmett was here, the nurses, the doctors
always included him, took him down to the let him play,
let him do stuff, and just it's a family place
(20:07):
and they take care of the whole family. And there's
always always somebody. Like I was saying, we came in
thinking we had the worst case possible, and there's always
someone in the next room, down the hall that has
(20:28):
worse than what you have. So it helped us put
a lot of things in perspective, not only with our son,
but in life of wants, needs and who you're around
and who you want to be around. And I mean,
we were lucky enough our son got to go home.
(20:56):
I actually what we were in children's ran into two
previous classmates that I hadn't seen for twenty five plus years.
Speaker 5 (21:17):
And neither one of their children got cool. So there's this.
Speaker 4 (21:26):
Is a wonderful facility and I can't say enough about
it and about the people, the staff, the surgeons, just
everyone included in, even you guys at KAT one O
three helping out with this stuff. It's amazing. It's amazing. Community.
Speaker 1 (21:49):
We have a lot of people listening right now to
your story and they haven't decided whether or not to
contribute to our radiothon. What would you say to them
to encourage them to maybe reconsider giving during our radiothon
to help children's.
Speaker 2 (22:04):
I would ask that everybody just please try to donate
because this money helps so much. It helps not only
the kids, like my husband had said, it helps with
us as parents.
Speaker 3 (22:17):
It helps the doctors. It gives them so much to
take care of these kids. I mean, we need it.
Speaker 2 (22:23):
We need all these new advances that are coming out,
the new equipment and stuff that will help keep these
kids here longer and give them a shot at life.
A lot of these kids, we know they have a
short life, but with everything that is coming out, like
advancements in medicine and everything, this this money will help
them learn about this stuff and go ahead and buy
(22:45):
all this stuff to help with all that, and these
kids may live longer than they've ever lived before. And
this gives them a shot in their life.
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