Welcome to the Swallow Your Pride podcast. I'm
your host, Teresa Richard. I'm a board certified
specialist in swallowing and swallowing disorders
and founder of the MediSLP Collective and MediSLP
Education.
This podcast is dedicated to delivering the latest
evidence based practice to
SLPs everywhere while also recognizing that medical SLPs
everywhere are doing the best with what they've
got. Whether you're a new clinician seeking tangible
tools for therapy or a seasoned vet stuck
in a rut, my goal is simple, to
help you advance your practice without feeling overwhelmed
or underappreciated.
This means that together, we'll build confidence, broaden
your knowledge, and reignite your passion for our
fields. So if you're listening, I encourage you
to swallow your pride and be open to
new ideas because at the end of the
day, you and your patients deserve that kind
of support. Just a quick disclaimer that all
statements and opinions expressed in this episode do
not reflect on the organizations associated with the
speakers and are their own opinions solely. With
that, let's dive in. Hello, my friends.
Okay. So welcome, welcome, welcome back. As you
might have noticed, we took a little bit
of a hiatus this summer.
The Swaddler Py podcast has been going strong,
weekly,
consecutively
since
02/2017.
So it's been almost eight years over 5,000,000
downloads, which I'm so, so, so grateful for.
But just this summer, I decided I wanted
to take a little bit of time off
and just redo some systems and processes we
had on the back end, and the hiatus
lasted a little bit longer than I anticipated,
but we are back. And so to kick
off, this new season of the Swaddler Pride
podcast, I've got so many, so many amazing
guests lined up for you guys, this this
semester this this semester. Clearly, I have school
on the brain.
This year, this this whatever coming up soon.
But all that to say, I wanted to
start off with a solo episode.
This is something that's been going on in
my personal life over the last few months,
and also bleeds into my professional life heavily.
I've I've shared a little bit about this
on social media,
but just wanted to give you the the
full context, the full rundown, the full everything.
So before we dive into that, there's just
a lot of good updates I wanna catch
you guys up to date on, which I'm
so, so, so excited. I am in the
home stretch of finishing up my dissertation, which
I, in a million years, can't believe I'm
saying that, which is just crazy.
So I'm I'm researching
fees and
accessibility
and just different,
SLPs and different other medical professionals' perceptions of
fees.
And if you're listening to this podcast,
you are already in the know, and you
probably think that's such a strange foreign concept.
But in some facilities, fees is not widely
accepted, and it's something that I'm so passionate
about getting
this tool accessible to patients everywhere, to our
rural patients, to patients that,
aren't able to come into hospitals and get
modified. And just I've seen the good that
this procedure can do, and so that's, you
know, just a little snippet of my dissertation.
I've gotten some questions about what I'm doing
for that project, and, I'm actually gonna be
presenting,
at ASHA at the ASHA convention
about some
some data that I've got. So I'm excited
about that and, hopefully, some other, conferences and
conventions coming up as well.
And then in other other great news, we
officially have a few graduates of our MedSLP
certification
program.
And if you've been listening along for years,
you know, this is a program that I
started about four years ago. Just a need
that we discovered in a lot of the
major medical centers have clinical ladders for their
SLPs
and have other accredited certifications for other professionals
such as PT and OT, and nothing like
this exists for med SLPs.
So I wanted to put together a real
rigorous med SLP certification
program,
that basically helps medical SLPs feel more prepared,
more supported in their settings.
It has been a grueling process.
So the the program participants that have completed
the program,
have taken a 128
of advanced Met SLP coursework.
They've worked closely with mentors. They've gotten on
weekly calls with mentors, and they completed and
passed our
Met SLP exam. And that exam has just
been the death of me the last
I'd say two years mostly. There is so
much that goes into that. I believe I'll
I'll have to get the exact number. I
believe we had about 50 different SLPs involved
in the writing and reviewing
of that exam. So,
we're going through accreditation with the NCCA, which
is an arm of ICE, which is, the
accreditation body for ASHA. And so it was
recommended to me to go through the NCCA
because they focus on a lot of medical
certifications, and that's really what we're going after.
So in following all of their protocols to
have this exam,
you know, approved by an accrediting agency,
there's just so many different committees that had
to be involved. So anybody that served on
any of those committees that review test questions,
that help us write test questions, that threw
out test questions,
thank you for your help and your support,
and those people were not allowed to be
paid.
They just had to be on a volunteer,
basis just to to prevent bias. So thank
you for everyone who participated in that time
and energy, and we also,
had to have a big group of beta
testers. So thank you to everyone that was
our beta testers for that. So,
all that to say,
we hopefully should be fully accredited in the
next few months. We've done all of the
paperwork and and met all of the components.
Now it's just a a finishing loose ends
thing up and and submitting. So thank you
to everyone for your support with that. So
some days, I feel like I'm not doing
anything behind the scenes here, and then I
realized I'm running around like a chicken with
my head cut off. So that's that's where
we've been. And then we also have some
brand new things going on in the Medisal
Peak Collective.
We in in going through my or going
through my PhD coursework,
I decided to
and not really pivot, but expand what I
was researching in in PhD school. And, you
you know, obviously, swallowing is is near and
dear to my heart, and I'm I'm board
certified in swallowing, and that's really my passion.
And I, you know, wanna continue to help
tons and tons of patients with that. But
in growing these other education companies, I just
realized I had a real passion for for
health care education. And so one of the,
one of the concentrations that you could have
in in my doctorate program was health care
education. So I took on that concentration. I
completed all of those requirements.
And I just really love the courses on
adult learning theories, and I just found that
really, really fascinating, especially for health care professionals
and
specifically medical SLPs. So I've taken a lot
of that knowledge and integrated that into what
we are doing at the MediSLP Collective, and
we have really revamped,
our entire program,
the entire website. So, if you're interested in
checking out, MediSLP Collective, we are open for
enrollment right now through August 31. But I
will just share with you that we've really
shifted from a passive learning model to an
active learning model. So we have hundreds and
hundreds of resources in there that are PDFs
that you could listen to. We have webinars
that you can listen to.
But the more that I'm I'm learning and
learning is that adult learners need active learning.
And so what that is is mostly learning
by doing, and that's hard. That's very, very
hard to get as an adult who is
working full time, juggling families. You know, how
do you get this quote, unquote, hands on
experience? So we integrated a lot of new
technology into this. This year, we have new
clinical simulations.
Our our tech team behind the scenes, I
thought, was gonna rip their hair out or
really,
quit maybe because it was just really difficult.
Each of these simulations took about thirty hours
to create,
which is just a lot a lot of
tech time behind the scenes, but I'm so
grateful for how they came out.
We set really high standards for these so
you can go in and and really just
go through an entire clinical simulation and get
feedback on why that's, you know, a a
good way to look at it, why that's
not, if there's a different alternate route you
should take. So really happy with how those
came out. We also have new demo and
discuss sessions. So we have actual SLPs coming
on and showing and doing the thing that
they do. So whether it's doing a fees,
whether it's doing video stroboscopy, whether it's, showing
how to do vocal exercises. We just were
getting a lot of feedback about, like, I
wish I could just watch someone do the
thing. So now you can watch someone do
the thing, ask questions, get feedback on it.
We also have implementation hours where we are
taking things like report writing or, you know,
are taking things like report writing or, you
know, smart phrases, and we are helping you
walk through revamping those systems to make your
workflow a little bit better.
And, you know, I'd be remiss if I
didn't say, you know, how, you know, wonderful
AI is, but it's also confusing a lot
of people. And AI is absolutely fantastic for
information. You can get so much information there.
So what can we offer in the collective
that you can't get through AI? And so
that's why we've really changed a lot of
our offerings to have people, actual people, real
live humans, behind the scenes helping you do
this. So, we've also totally revamped our mentorship
program. We've got a lot of brand new
mentors within inside the MetasLP Collective.
Just want to help you become the best
SLP that you can be in a safe,
supportive community and environment, and we just have
incredible incredible team that truly cares about your
patients. Your patients are our patients. We're all
in this together,
and I couldn't be happier with the team
that we have behind the scenes. So I
think I just caught you up on all
of my professional life the last few months.
So that, you know, that was kind of
why the podcast took a little bit of
a hiatus, but I am glad to be
back. I do wanna clue you in a
little bit on my personal life, and I
will say because this ties into what this
entire episode
is about. And I just wanna really lay
the land. I'll probably get a little vulnerable
and overshare here,
but I believe that context is really important
to getting to the decisions that we came
to as a family,
and why we went this route and why
it just totally shook my professional SLP brain
to the core as well. So,
I will share that about,
gosh, a year and a half ago, almost
years ago.
My ex husband and I got divorced, and
we were together for twenty years. It was,
we had a wonderful marriage. Just things did
not align. You know, we were not aligned
on a lot of things, and and we
are still dear friends to this day, and
we talk every day. And I I think
we co parent wonderfully. Yeah. We live around
the corner from each other. Our kids go
back and forth, you know, very, very freely.
So I just I I want to say
that because I I respect him very much
as a as a as a co parent
and also as my father of my children.
But that being said, that brought on some
different life changes that I was not expecting.
So like I said, we we live in
houses around the corner from each other.
You know, the kids go back and forth
on the weekends. We usually just split days,
and and it's very nonstructured, which which we
both appreciate. And, you know, what's what's
interesting is, you know,
you've all been here through my,
you know, experiences with my son. And if
you're new to this podcast, my son, he
is almost 10 now, which is just crazy
to say, was one of the very rare
chromosomal abnormalities. So not something that,
it's a unbalanced translocation of the ninth and
thirteenth chromosomes. So there was only nine documented
cases in the world when he was born.
I believe there's upwards of maybe twenty to
thirty now, but that being said, there's not
enough to give us a name or a
club. Like, we it's not Down syndromes or
Down syndrome or Angelman's or anything like that.
We we don't have a name. We don't
have a support group. We don't have a
community.
So that has just had its own challenges
in, you know, working with different doctors and
different therapists. You know, they would always ask
me, well, tell me about his condition, and
what do we know about this, and what
are the characteristics, and they're just all vastly
different. And we had a wonderful neonatologist when
he was in the NICU when he was
born,
but she basically handed me nine case studies
of the other nine documented kids with this
condition in the world, and the kids varied
widely from, you know, being having
severe cardiac conditions, trachs and vents all the
way to, you know, living a very full
life, work working at Walmart, working at Target.
So what I loved about that was that
she basically did not put any limitations on
my son and his capabilities. And she just
said, you know, the sky's the limit. Get
him early intervention. Get him as much help
as as you possibly can.
And so we did. And,
so he was in the NICU for feeding
issues for fifteen days and just was not
wanting to eat. You know, some days he
would you know, at that time, volume driven
feeding was the thing. And and now we
know now that that is not the thing
to do,
but he had to drink so many cc's
in order for us to get him out
of the NICU, and it was just it
was awful. Awful. Awful. So all that to
say, feeding has always been tough for him,
for us, for us. I will say we
do have a nanny that we've had. I
think I think she's been with us for
three, four years now. She's just an angel
on earth, and she goes back and forth
between my husband, my or between my house,
my ex husband's house, and,
you know, she's a very stable caregiver for
my children. And we love her to pieces.
She is so wonderful with my son.
She feeds him. She she does, you know,
most of his care for him. And, you
know, the the tough part is the reality
is for him to eat a meal takes
about forty five minutes to an hour. So
a lot of her job is just feeding
this kid.
And we about stand on our heads trying
to feed this child.
It's a lot of time to to be
honest. You know, he he probably eats, I
would say, about four meals a day, and
each meal, like I said, takes about forty
five minutes to an hour. Just,
just very slow to eat. Takes him a
very long time to chew.
We've had swallow studies. He does not have
really any swallowing impairment other than just being
very slow. And, you know, we can give
him meats. We we don't just because it's
we we give him chopped up meats. We
don't give him give him whole meat. Don't
want him to choke. But,
we we try to be strategic in what
is the magic recipe of giving him foods
that are soft enough to eat, that he
can eat enough quality quantity of that has
enough calories
to get some muscle mass on him, but
not enough that we overstuff him.
And so it's just it's been a challenge,
really, really, really been a challenge. And I
think as you know, here's where my professional
brain comes in. As an SLP who's board
certified in swallowing disorders,
I took a lot of pride in how
far we had come with him. You know,
we've had some wonderful SLPs that have worked
with him. Just they'll be lifelong dear friends.
And, you know, he even was discharged from
feeding therapy about two years ago just because
he was doing well. You know?
He would eat you know, he'll eat chicken
fingers and french fries if, you know, they
go out on a field trip. And, you
know, there really wasn't there wasn't much more
progress we could make other than how do
you get the kid to eat faster who
overall has just very low tone, very poor
tone. So, you know, we were at a
good place, or so I thought. You know,
I I thought we were at a good
place. He he does have GI issues. He
is followed by a GI.
Again, they you know, we've had endoscopies on
him, have not found anything, but he does
have reflux. He he does vomit at times.
So,
just just some some interesting funky things that
we just can't tie together sometimes. So I
wanted to lay that foundation down. I wanted
to give you all the context
for where we went this summer and and
why we got there. So all that to
say,
it's it's tough to feed him. And
as, you know, we now are a two
household family, and sometimes on the weekends, you
know, it it's as my daughter's getting older
too, she's five now. She loves having little
neighborhood friends over, and and I love that,
you know, we we have friends in our
house, and that just makes me happy that
we have a fun, loud house full of
friends on the weekend. But the thing that
became challenging is, you know, sometimes this summer,
she'd be in the pool with her friends
and I'd have to say, you know, hey.
Oh, everybody's gotta get out of the pool.
I gotta go in and feed Cam. You
know, we and it would take me about
an hour, and it just became you know,
my daughter would say, well, that really stinks.
Like, I just wanna keep playing with my
friends. You know, why why can't you just,
you know, why can't Bubba eat later or
something like that? And it just those sort
of things little just weighed on me, like,
as a as a sister of someone with
special needs. I just my heart hurt for
her a little bit. But that being said,
she's the most amazing sister to him, and
they they're not in the same school this
year, but they were last year and they
were in camp together. And she loves him.
She takes such good care of him. She
tells all the teachers and and friends things
that he needs to know. And and she's
a great sister, but she's also five, and
she, you know, wants to to have her
own her own free time. So it became
a little more difficult to, you know, how
do we juggle this as a, you know,
single parent home? And, you know, sometimes my
ex husband would call and say, you know,
I'm I'm trying to do something with my
daughter. It's just hard for me to to
feed our son too. And, you know, we
don't have our nanny all the time. So
it's just the two of us try to
juggle it on weekends. And so sometimes I
would go over there just to feed my
son, and and it's like, you know, how
how practical is this? And and it it
stinks that, you know, it's something that we
struggled with, but it also we didn't think
about it or talk about it because that
just is the reality of our situation. And
it and it is what it is. You
know, you do what you have to do
for your kids. And, you know, I love
my little munchkin more than anything. He's the
cutest little Bubba. So all that to say,
we were, I was talking with a friend,
and it was someone that was introduced to
me this summer.
I have have a friend here in our
neighborhood who is also friends with this family.
And they said, oh, do you, you know,
do you know this family? They they have
a a son with special needs about the
same age as your son. I said, no.
I I don't know them. So, you know,
we had mutual friends introduce us. So I
got talking to this mom and, you know,
tell me about your son's situation. I'll, you
know, tell you about mine. And, you know,
I was just telling her, you know, just
just a little bit about him. And and
she says, oh, yeah. You know, we we
we don't feed him by mouth anymore. We
use a feeding tube. And she said, well,
you guys have a feeding tube. Right? And
I said, no. We we don't. You know,
I said as as an SLP who is
board certified in swallowing, I take so much
pride in my child being able to eat
by mouth. And it was just this real
hit to my ego to say. And she
said to me, getting a feeding tube for
my son has been the absolute best decision
for our family. It has been the biggest
blessing that our family could have ever endured.
And that was, like, the biggest
shock to my heart. Like, just the biggest
shock ever. I, in a million years, never
thought a feeding tube would be a blessing
for my son, and I never looked at
that looked at it that way. And
I just it was such a interesting,
like, professional
ego death for me to say, holy cow.
Like, how have I had my blinders on
for so long that I didn't realize that
feeding tubes could be good? And, you know,
all all I think about is SLPs and,
you know, medical SLPs. We just wanna get
patients off feeding tubes. We wanna get them
meeting by mouth. That is what we do.
That is our job. That is our sole
purpose. And, you know, now I know you
know, I I know that patients with head
and neck cancer, you know, yes, they get
feeding tubes while, you know, they're going through
chemo, radiation, and, you know, but the goal
is to eventually, once they're cancer free, to
get the tube out so they can go
on and continue with their quality of life.
And so for me, the thought of a
feeding tube being a blessing for my son
who does eat by mouth, mind you,
just like I said, it just was shocking
shocking to me. And so I started looking
into it more and and me
as as a medical SLP, you know, who's
worked in hospitals, who's worked in skilled nursing,
I just think of, okay, there's this IV
pole and we hang the bag and he
has this tube and it goes into his
stomach. And I just think of my wild
and crazy little man, and he would rip
that tube out so fast. And so I
just, you know, I said, I don't think
there's a way that we could do that
for him. Like, that just there's no way
he would allow a tube to be hooked
up to him without ripping it out. And
she said, well, we just do bolus feeds.
We just do gravity bolus feeds. And and
I said, okay. But doesn't that take forever?
Like, to me, it was kinda like, if
if a tube feeding is gonna take forever,
why wouldn't I just feed in my mouth
if that takes forever as well? And she
said, no. It takes a minute and a
half to put down all of his calories
for the meal, and I was I was
just shocked to hear that. And, you know,
if all of you out there listening knew
all of this and and and this is
news to me, then it's just crazy. Crazy
to think that I didn't know all of
these things. And so I just got talking
to her more and more, and she said,
you know, it really might be a blessing
for you guys too. And she said it
just gives us freedom. Like, it gives us
time freedom to not have to worry about,
you know, do we have to stop? Do
we have to pull over and feed him?
Do we have to interrupt our day to
feed him? You know, can we just get
him new his nutrition quickly and easily? And
everyone moves on with their day. And I
just instantly thought, like, that would be a
godsend, not only for mornings because mornings are
rough. I,
you know, I'm I'm a single parent household
now and trying to get my son out
ready and out the door, get my five
year old daughter ready and out the door.
Mornings are tough. And then you add in,
you know, trying to feed him for about
forty five minutes, and it's it's tough. So
I just thought, oh my gosh. If I
could just give him a tube, tube feeding,
that would take a minute and a half.
That would just be insane. And then thinking
about our weekends too, as I shared,
you know, just wanna do things with my
daughter and let her play and, you know,
not have to take tons of time out
to to feed my son. We could just,
you know, get him nutrition quickly and easily
and effectively and and move on with our
day. And
so I just got thinking about it. I
got thinking about it. You know, I brought
it up to my ex husband. Like I
said, he and I have a great great
relationship and, you know, we talk about all
these things with both of our kids and,
you know, he wasn't wasn't set on it
at first. He didn't see all the benefits
that I saw at first, and and he
had the same exact concerns I did. He
said, well, Tracy, he's gonna rip the thing
out. Like, there's no way he's gonna let
us do it. I said, oh, I don't
know. I said, I I I think we
should at least try. Like, I I I
think it's something we should really look into
and consider because I think it can be
really helpful for all of us. And, you
know, one of the other things too that
was a contributing factor was, his physical therapist.
He has a he has an awesome PT
team. And they said, you know, we're sort
of at this point now where he's burning
so many calories in his p in his
PT that we just can't get enough calories
in him by mouth because he also burns
so many calories just trying to take in
the food that he's taking in because it
takes him so long. And so if you
think of it from, like, a physiological standpoint
like that, that makes tons of sense too.
So his therapy team was on board with
us exploring this as well because they wanna
get more nutrition in the kids so that
they can get more, you know, muscle growth
and and hopefully get them walking someday. And
so yeah. So so we explored it. So
I, you know, made an appointment with the
Children's Hospital here.
It was the general surgeon here that did
the the surgery. Like I said, he he'd
been to a GI, but he has some
GI issues just in in mild form of
reflux and some vomiting, but no actual conditions.
Like, we've had him tested for EOE. We've
had him, you know, looked at for a
bunch of different things, and and none of
that was really on the radar. So I
ended up meeting with the GI doctor, and,
you know, he said, yeah. He, you know,
definitely does pretty much qualify for, you know,
being malnourished
because
of he's just underweight. He's never ever been
on the growth curve. He's just a little
guy.
So yeah. So GI was onboard with us
going forward with this.
So yeah. So fast forward to I met
with general surgery at the Children's Hospital,
and the surgeon could not have been nicer.
Nicest, nicest guy in the face of the
earth, exactly what you would expect to be,
at a children's hospital, and answered my questions
and,
you know, just said, basically, you know, after
the procedure, you know, we'll explain, you know,
how to use the tube and and more
things like that. And, you know, I know
my situation was unique because I am an
SLP, and I do know this stuff. And
my son is also we've worked with the
same dietitian since he was literally born. We
we hired a dietitian when I brought him
home from the hospital after fifteen days in
the NICU,
and she's been with us ever, ever, ever
since. Part of her specialty also is helping
kids, you know, get the right amount of
nutrition through tube feeding. So
she was on board with this. And I
think one thing that, you know, I wanna
share from this is I called her and
told her, hey. This is what we're thinking.
And she said, you know, Teresa,
this is something I was actually thinking about
for you guys last year. I just didn't
know if you're ready to hear it. And
I've sat with that for a little bit
because and I'm torn. Right? I think as
a medical professional,
you know, it is our duty to share
things
with families
even if they might not be ready to
hear it, if it might be in the
best interest of the child. And so I
don't fault her for for not saying anything
to me last year. It might not have
been the time. She might have sensed sort
of how crazy my my life was at
the time, but I thought about that. And
and I think I think about that professionally
a lot is, you know, how do we
have these difficult conversations
with patients and their families?
And, you know, she's probably right. If someone
had just sort of brought it up and
said, I think your son needs a feeding
tube, I probably would have have thought that
I was just the biggest failure on the
face of the earth as an SLP and
as a mom. Because like I said, I
just take so much pride in getting patients
to eat by mouth.
So so so yeah. So I I sat
with that for a little bit, and then
I'm glad she was totally on board. And,
you know, she said, I I know because
we supplement with just a lot of different
nutritional supplements. We put different powders in his
food and things like that just to get
him more protein and more calories. And, you
know, she said, I know what you know,
there's different supplement lines you guys are already
using that have tube feeding formula. So I'll
I'll recommend those. And so I told the
surgeon, you know, we have a dietitian already
set up. You know, we're we're good there.
So he said, okay. So I won't have
the hospital dietitian call you. You know, you
you guys are are all set there. So
all that to say, we set the date
to get the tube put in. And we
got a call you know, you get a
call from the the secretary about two days
in advance, and they give you your, you
know, time to report to the hospital. And,
you know, I just said I'm just trying
to navigate childcare for my daughter while we're
there. You know, can you give me a
rundown of what the day might look like?
And she said, yeah. You know, you'll come
in at yeah. She said, be there, you
know, seven, 08:00 in the morning. And she
said, you know, he should be discharged by
about four. And I said, oh, okay. So
it's just a, you know, an outpatient procedure.
And she said, well, yeah. She said it
the the surgery itself takes maybe an hour
or two, but then, you know, he'll go
in recovery. And, you know, once he wakes
up and you're good, you can take him
home. So I, you know, was just planning
on my you know, I prepped my daughter
for this and just said, you know, Bubba's
having surgery. We're gonna put a tube in
his belly. And,
she was just so cute the way that
she listened to that. And she she wants
to be a doctor when she gets older,
and I truly believe she will be one.
I know it's crazy to say that at
five, but her medical knowledge is absolutely insane.
And she's just enthralled with all of this
stuff, finds it so fascinating. But, you know,
so I just told her, you know, we'll
be back. Bubba will have a tube in
his belly, and, you know, he'll be able
to eat a little bit better.
So, yeah, so my mom went with me
to the surgery,
took me took me you know, took us
both. We got there,
and, apparently, it was a rough day. It
was a rough day at the Children's Hospital
and for
surgery. And he was supposed to go in
you know, he's supposed to be, I think,
maybe the second or third kid in the
morning because they said, you know, they do
the anybody babies, you know, first thing, but
then they would they I guess, the the
surgery, you know, schedule is usually
infants and then kids with special needs, and
then they just go in order of age
because the kids are, you know, NPO for
midnight. So he was supposed to be about,
you know, maybe third that day. So it's
getting to be, I don't know, one, two
in the afternoon, and he is just
restless.
So restless. So so my son also doesn't
walk.
So, you know, we have him basically in
a hospital bed. I'm trying to lay there
with him. I'm trying to put movies on
him. I'm trying to play toys with him.
He's trying to roll out of
the bed. It was just it was chaotic.
It was stressful. It was awful. And, you
know, I just said, if this is gonna,
like, continue, like, we're gonna have to come
back another day because I'm this is just
awful for all of us.
He was screaming in the hallways. Like, it
was just crazy. The surgeon comes in and
says, okay. You know, we're getting ready to
do the surgery, but, you know, just wanna
make sure you guys are good to stay,
you know, stay overnight, and we've got that
all set up for you. And I said,
what are you talking about? We're not prepared
to stay overnight. And he was like, every
time we do this, we keep them overnight
just to make sure that in the morning,
you know, you guys know how to do
the tube feeding. The tube is good and
working. And I said, okay. No one ever
told us that, first of all.
And second of all, like, I'm okay getting
training, you know, from from our village, basically,
or I'm happy to even come back tomorrow
and get get more training. I just we
didn't bring anything to stay overnight. I have
to get home to my daughter.
There's no way he's gonna sleep in a
hospital bed tonight.
He's gonna try rolling himself out. Like, there's
just a million
scenarios that I was like, this there's no
way this can work. And and the surgeon
was like, well, what have you done in
the past? I said, he's literally never spent
a night in the hospital other than, you
know, fifteen fifteen nights in the NICU. So
he said, okay. He said, you know, with
your professional knowledge, you know, if you're comfortable
with me, we'll do the surgery. I want
you to meet with the nurses right after,
you know, they'll give you the post op
care, all that. And then tomorrow, I do
want you to come back and, you know,
meet with our nurses, and we'll make sure
that you guys have all the supplies you
need and and get you set up with
the DME and all that. So totally fine.
Sounds good. Sounds great. We do the surgery.
Everything is good. You know, we're talking to
the nurses in recovery. They were just the
sweetest, you know, angels on earth. And she
says to me, you know, usually, we send
you home with these different supplies. She goes,
but we don't have any supplies. I was
like, what do you mean you don't have
any supplies? And she's like, we don't even
actually have the right tube that fits the
button that goes in here.
We're all out of them. We ordered them.
They're not in. She's like, so I basically,
like, rigged you up a tube concoction that
you can use until you can get in
with the DME
and get the actual tube that hooks into
the Mickey button. So I'm like, okay. Here
it goes.
So the surgeon tells me, you know, I
want you to make sure you give him
a tube feeding at, like, 09:00 tonight or
something. It was, you know, had to do
with the timing of the anesthesia wearing off
and him waking up, and it was it
was a specific time. And so, you know,
the day was long. It was crazy. My
mother goes you know, my mom made sure,
you know, my son and I got home,
and and we were okay. And she's okay.
I'm gonna go. Are you okay? And I
said, yeah. He's, you know, sound asleep. I
said, I'll wake him up at 09:00, and
I'll I'll do his tube. And, you know,
I practice with the nurses there. I you
know, I've done a tube feeding before. I
thought it would be fine.
So I wake them up at 09:00, go
to do the tube feeding, and I clogged
the tube that they tried to give us.
They gave me a type of formula to
stick in the tube, and I just assumed
this was what I was supposed to use.
They did not tell me that's not the
type I was supposed to use. Those were
samples that I had to wait thirty days
to use once his tube or once it
was healed, but there was a special formula
that I was supposed to use that night
that they did not give me. So I
clogged this my son's tube, and I'm just
freaking out. And luckily, I called my neighbor
who was the one that convinced me to
get this in the first place, and she
said, oh my gosh. I'll be right over.
Like, I'm in tears, you know, thinking I
just did something horribly wrong already. So she
comes over. She helps me. You know, she
brought the she knew exactly what it was
that he was supposed to have that night.
She brought it over. She helped me do
it. We got it in. All was well
and good. So that was our first night
together.
So the next day, you know, I take
him back to the doctor's office, and they
were they were so very sweet in the
doctor's office too, but they said, you know,
we're having this supply problem and we don't
have the stuff to give you that we
normally, you know, would bring you in here
and show you. And so I was a
little perturbed to be honest because I'm like,
why did I drive all the way? It's
not close. It's about an hour from our
house. I'm like, why did I drive all
this way for you guys tell me you
don't have anything to give me, so you
can't really show me how to do anything
because you don't have anything to show me.
They said, you know, there's two different DME
companies they recommend, and they said, you know,
get in touch with either of them. We'll
make sure that they have these exact supplies
that you need. In the meantime, my friend,
my neighbor, who's just been an angel on
earth, you know, told me, hey. Use this
tube. It's the easiest.
She told me exactly what to use. So
I'm ordering this stuff on Amazon because in
the meantime, I'm struggling to get in touch
with these DME companies.
I don't even know the number. I probably
called and left 50 voice mails, 50,
for these companies to return a call to
have my child to do an intake. And
I don't know what went wrong there or
why, but it was just awful. So in
the so like I said, in the meantime,
I'm ordering all of this stuff on Amazon,
out of pocket. The the specific formula that
he was supposed to have in the beginning
that the hospital was supposed to give us
samples of and then the DME was supposed
to give us because insurance was supposed to
pay for it. None of that happened. It's
about $300 box. And so it was about
$303,100
bucks every five to six days. And so
there was that and then also purchasing the
supplies. So finally, I believe it was about,
no. It was maybe a week and a
half after the surgery. I had spent hour
like, hours. You guys hours calling DME companies
trying to get set up. I I was
talking about this on Instagram, and so many
of you wrote in and said, you know,
oh my gosh. That company is awful. Try
calling this company. And it was like, every
time I would get through to somebody, they're
like, oh, are you an established patient? I
said, no. We're brand new. And and they
said, okay. Well, you have to speak to
this department. And it would just reroute me
back to the +1 800 number, and I
would be in line in the queue for
sixty five minutes again. Again. Like, it became
maddening. So by I think it was about
a week and a half later, and and
I just I had a lot. I was
busy with work stuff going on too. I
couldn't spend my entire workday on the phone
with these companies. So I hired a special
needs advocate to help me just get through.
So she had had a connection at some
other company. So by the end of the
week, I think she had spent I probably
paid her, I think, about for fifteen hours
worth of work over three days to get
in touch with this DME company.
It was Friday night at 06:00,
and they called me. And, you know, I
I just remember, like, basically losing my mind
on this woman. I was like, thank you
so much for calling, but, like, this is
insane.
Like, I know this system. I work in
in the medical field. I have my son.
I, you know, work with therapists all the
time, but, like, this is insane. Like, if
I didn't if if I'm someone that doesn't
know how this stuff works or if my
son couldn't actually eat by mouth or if
I couldn't afford to pay out of pocket
for this formula, like, this is absolutely insane.
And so
she said, you know, no problem. I will
have the local rep to you drive out
to your house on Monday
and get you all of these supplies. I
wrote them all down. I have them all.
You know, we'll get them out to you.
Monday comes. I call this person. Can't get
in touch with the person that I spoke
to Friday at 06:00 because you have to
go through the +1 800
come you know, number. And so I probably
talked to six or seven different people. Oh,
we don't know who that person is. We
don't they don't work here. I'm like, what
do you mean they don't work there? Like,
I said, then then this rep was supposed
to come out and deliver stuff to me.
And they're like, oh, we don't usually do
that. So it was just a whole another
like, I could not believe we were doing
this again. A whole another week goes by.
Whole another week goes by. Finally, I get
in touch with someone, and they do send
me the stuff that we need. So all
that to say, it was about a month
of me paying out of pocket for all
of this stuff. And then, also, here is
the caveat. That formula that they did want
him to have those first thirty days, our
insurance does not pay for. And
I I will share you know, I'll I'll
overshare this. My my ex husband has the
kids on his insurance policy because he has
incredible insurance, and we specifically kept the kids
on his insurance policy because of everything they've
always provided for my son.
We we get a lot of medical care
for him. We get a lot of therapy
covered for him.
I've never had any complaints about the insurance
that he has. All that to say, they
tell us they have an exclusion
on tube feedings
on tube feedings. They do not provide tube
feeding material, or they do not provide tube
feeding formula. They provide the actual tubing, which
I believe cost me 99¢
and about 79¢ respectively when I ordered it
off Amazon.
But they don't cover the specific formula for
tube feedings, which I just thought was insane.
Insane. And and I just my heart goes
out to anyone out there that's experiencing this
that, you know, is not able to pay
for this formula to keep their children alive.
Like, I I just it's become a whole
another passion project
of mine.
So, anyways, we we did end up getting
hooked up with the d m the DME.
I do now get the supplies for them.
I am still purchasing the formula off Amazon.
But it's just absolutely insane to me this
whole process. And why I wanted to talk
about this was just a few different reasons,
and I and I think the the main
reason and I've had a lot of conversations
with other SLPs about this.
They've said, you know, I can't believe your
experience. That's not how it is at my
hospital.
And what I say to that is I
wanna challenge you to see if that really
is how it is at your hospital. And
they say, oh, well, we have this department
and we have that department, and that's how
I felt this entire time. I felt like
a hot potato being tossed back and forth
between
this company, that company. Oh, and then, like,
to boot, when I finally did get in
with the DME company, they could never get
a hold of the GI or the general
surgery department to get the proper orders.
So that I had to have the special
needs advocate do as well,
bridge that gap and be that liaison. And
so, you know, I've had some SLPs say,
oh, well, the DME company usually calls the
GI, and they get the, you know, they
get the order faxed. And and I hear
you,
but I also wanna challenge you. Is that
really how the process goes? You know, do
you guys know if if you are recommending
feeding tubes or if you do think this
is a way to go for some of
your kids and patients,
please help them with the process.
I just I felt like I was handed
off by so many different people
that there really was not there was no
one person that helped us through this.
And and I understand that as a professional,
I sort of piecemealed it together
because I'm an SLP and because I knew
this.
But it's it opened my eyes to just
this entire
system wide dysfunction,
of just everybody living in their own silos
and nobody working together.
And it overall, I'm I'm very glad we
did it. You know? And I can say
that a few months later, now that we've
had it, he's doing well. He's gaining weight,
which he probably hasn't gained weight in about
two to three years, to be honest. He
would gain weight, then he would get sick
and lose it. He would gain weight, get
sick and lose it. So it's been a
process.
He also has had a really, really bad
eczema that is not bad. He's had a
little some mild breakouts, but I'd say for
the most part,
you know, as a mom, I just have
horrible guilt that getting my child, you know,
optimal nutrition, he now, you know, has very,
very mild eczema as opposed to horrible eczema
outbreaks that he used to have before. So
overall, I'm I'm really, really, really happy. We
did last week. So for the longest time,
I basically figured out how to give him
the tube without him ripping it out.
And I sit on the floor with him,
and I basically just sit and talk to
him and sing to him and act goofy
with him and distract him while I'm doing
it, so he doesn't ever grab at it.
It. And last week, it was my daughter's
first day of kindergarten. It was all crazy
hectic. You know, I had probably tried to
plan the most perfect day for her, the
most perfect breakfast for her.
My father-in-law was gonna drive my son to
school so that we could walk her into
kindergarten, and it was just supposed to be
this picture perfect morning. And I don't know
what happened. I I still don't know what
happened, but I think, like, he reached for
it. My hand got caught in it. Before
I knew it, we ripped out the tube.
And I screamed, and he started crying. And
I was like, is he crying because he's
in pain? And I think he was just
crying because of my reaction, and it was
it was holy, holy chaotic. So all that
to say, I just was like, oh my
gosh. I don't know what to do. Like,
I have to get my daughter to kindergarten
too. So I just I bandaged him up,
and I would just send him with my
father-in-law, and I was like, I will deal
with this later. Like, I don't have time
to deal with this. And I called my
friend, my neighbor, who, again, is the the
saving grace in all this, and she said,
no. No. No. You you have to get
the tube back in within a half an
hour or else it closes up, and then
you have to do the surgery again. And
I was like, oh my gosh. No. I
didn't know that. Like, oh my gosh. I
I didn't even think of that. So she
said, well, I'm I'm home, and I also
have a nurse here for my son. I'm
happy to help you, you know, just bring
an extra tube over, and I'm happy to
to do it for you. So called my
father-in-law back, got my son here, drove him
to my neighbor's house. She had the nurse
that helped me put it back in, and
I'm so glad that I saw saw her
do it because it was much easier than
I thought it was. But since I had
never had the training when we were in
the hospital because they didn't have the supplies,
I didn't know what to do, and I
just freaked out. And so not not the
answer to do, but all that to say,
we got it back in and, you know,
now I know how to do it for
the future. So it's it's been, like I
said, it it really truly has been a
blessing. It's been such a professional eye opener
for me because I just think of how
many patients or how many kids could really
benefit from this. And not only that, but
the family and like his his eating and
his feeding has always weighed very heavily on
us as a family. It's always been something
that's just been very, very tough for us.
And to think that we are not bound
by this now, you know, we we couldn't
really go out to eat at restaurants because
he wouldn't be able to sit and eat
with us. And there's there's just a lot
of things that we couldn't do as a
family. And so now to have that freedom
that we can still go do things, and
he can still get his nutrition and his
hydration that way. And, you know, he's been
sick, and that was always the time when
he lost weight. And now that when he's
sick, sick, I can just give it to
him in a tube, and I don't have
to you know, he he wouldn't wanna eat
when he had a really runny nose and
things like that. So overall, it's been such,
such, such a blessing. So wanted to share
all this with you guys from personal perspective
of just the chaos that we went through
to the professional
mind shift that this has been
for me. And, yes, the goal is to
get patients
swallowing, but the goal is also quality of
life for the patient and their families.
And, you know, I wanna challenge you to
think of these things the next time, you
you know, this if if you think of
this, if if there's a patient or a
child that this this might help, I'm happy
to talk about it and and walk some
families through this because this was a really,
really tough decision for us. But it did
end up being a really, really, really great
decision. And, you know, I will say my
my ex husband is a he's a champ
now at at giving him the tube, and,
you know, it's it's been so much easier
for him to be able to feed him
as well.
And, also, you know, we we actually we
don't do it at the school. The school,
that that's, actually a whole another sidebar that
I forgot to share with you. I love
my son's school more than anything in the
whole wide world. They are the most wonderful
people, and I I I could not say
enough wonderful things about them. That being said,
when I called the school and said, hey.
You know, we're thinking of doing this. I
know, you know, you guys stand on your
head to feed him at lunch too. They
said, oh, yeah. Let's you know, we'll connect
you with the nurse. And I got this
very long email from the nurse that was
not very kind that said, I have enough
kids in this school to deal with. I
don't have time to feed him.
If you want to do this tube feeding,
you need to hire a private nurse to
come in and administer the tube feedings at
lunch. And I knew that was not the
right thing to say. I knew that was
not appropriate or legal,
but I just let it go. I I
really didn't even pursue the issue, and I
got speaking with, there's another woman that works
at a school that we've known for years
and years and years. And I just said,
hey. You know, I I I haven't made
any decisions yet, but I'm thinking about this.
You know, what would you guys think of
this from a school perspective? And she said,
you know, she said, if if you want
us to do it, we'll figure it out.
We'll, you know, we'll we'll train, you know,
train his caregivers that work with him at
school.
Not they're not caregivers. They're paraprofessionals.
They're therapists. They're teachers.
They just have different titles. But,
she said if it's something you wanna do,
we'll figure it out. And she said, you
know, my only concern is that he is
so social and that he loves snack time.
He loves sitting at lunch with his peers.
And she's like, I want him to continue
to be able to do that. And so,
you know, let's not make this a either
or thing. Let's make this a both and
thing. So we ended up you know, he's
he's not getting two things at school. We're
just doing it in the morning and at
night here, and then supplementing if we have
to. But during the school day, he's still
eating lunch with his peers, so still eating
by mouth and still eating snack. So we're
just we're doing a balance right now of,
you know, him having that quality of life,
but, us also just being able to get
proper nutrition and hydration in him in a
timely manner and and, yeah, and continue to
live life as a family that we wanna
be. So just wanted to share all of
this with you, and, hopefully, you got some
insights from this. And it's been quite a
hectic summer, but wanted to share all this.
And,
thank you for listening. If if this episode
or if anything in this landed with you,
I you know, please DM me on Instagram.
I would love to chat some more with
you about it, or if you have any
families that might be on the fence about
it. I I've talked to a few families
since this has happened and just explained, you
know, hey. It's been a huge blessing for
us, but,
there's a few things you should know ahead
of time. And I probably would have made
sure that I had the DME set up
ahead of time. Probably would have made sure
I had the supplies set up ahead of
time.
Did not realize there was gonna be a
shortage, that hospital wouldn't be able to get
them and then train me on it.
So that just was a really tough, tough
part. And, you know, is that the SLP's
responsibility?
In my certain in my specific situation, it
was not because we were not working with
an SLP at the time. But But for
some of you that might be involved with
your patients on this level,
you know, see what you can do about
helping them get their ducks in a row
and help getting things set up preemptively.
If you have any connections with any DME
companies, I know a lot of that was
that was a hot button topic when I
I posted this on because so many of
you said, that's the worst DME company or
please call this company or do you have
this company in your area?
And so yeah. So, anyways, thank you all
for listening. I really, really, really appreciate this.
It's been forever since I've done a solo
episode, but just had so much to share
here. And thank you again for listening.
And that's a wrap for this episode.
As always, thank you so much for listening.
And if you'd like to download the show
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