January 31, 2023 • 47 mins
El programa de hoy es sobre una madre de una guerrera de corazón de Puerto Rico radicada en la Florida, nuestra invitada es Jaileen Gueits. Comenzaremos en el 1er segmento conociendo más sobre las condiciones que afectan a Amy, su hija, las cuales son: Defecto ventricular septal, ductus arterioso permeable, congenital velvet pulmonar y estenosis y cuando fue diagnosticado. En el segundo segmento conoceremos sobre qué motivó a Jaileen a mudarse fuera de Puerto Rico, donde se encontraba viviendo. En el tercer segmento nos contará la prognosis con relación a las condiciones de su hija Amy.
Jaileen tuvo un diagnóstico de condición del corazón de su bebe durante el embarazo. Amy ha tenido 7 intervenciones y 2 cateterismos.
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Jaileen tuvo un diagnóstico de condición del corazón de su bebe durante el embarazo. Amy ha tenido 7 intervenciones y 2 cateterismos.
Enlaces a las páginas de podcasts y redes sociales de 'Guerreros Del Corazón':
Instagram: @guerrerosdelcorazon
Facebook: https://www.facebook.com/Guerreros-Del-Coraz%C3%B3n-106786128027732
YouTube: https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5Zw
website: https://www.hug-podcastnetwork.com/guerreros-del-corazoacuten.html
Conviértete en un seguidor de este podcast: https://www.spreaker.com/podcast/guerreros-del-corazon--4731556/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:05):
Welcome to your program that warrior isthe heart fighting against frozen caldiopathy. I
am Malta raquel Montero, one ofthe hosts of this program, and I
am also the mother with a warriorof heart. She accompanies me in this
interview Belen Blanton, another warrior witha heart. Today' s program is
about a mother of a Florida-based, warlike Puerto Rican heart. Our
(00:27):
guest is Jailine Wales. We willstart in the first segment knowing more about
the conditions that affect Amy, herdaughter, which are venticular, septal defect,
your alterios or permeable, pulmonary stenosiswith valve engineer and when she was
diastronosticated. In the second segment wewill learn about what motivated Jaylin to move
(00:49):
out of Puerto Rico where he wasliving. And in the third segment he
will tell us the prognosis regarding theconditions of his daughter, im Jailing.
She had one day her baby's heart condition during pregnancy. Amie has
had seven interventions and two catheterizations.Welcome to the bernest of the Jiling heart
(01:10):
Hi Hi. Thank you. Excitedto be here, thank you, thank
you, Saltin. I have acompatriot. We' ve been interviewing people
from different parts of the world andI finally got Puerto Rico, jue Pa
Hola Jailing. I' m anativity scene. In your biography we found
out that your daughter had diagnostic neighborhoods. He' s got several diagnoses You
(01:34):
knew about these conditions. In pregnancyor at birth, you can mention them
clearly. Yeah. In fact,I found out about the pregnancy on a
date of the rut and it wasa surprising thing because Larron didn' t
expect that even and told me thateverything was going well, but that it
(01:56):
was going to be a deeper checkin the heart because of what had happened
after the girl' s illness.For as she was more like how it
was said this man was, nowit was necessary to make as what more
study to avoid conditions. So andI went to my normal date and when
they did the checkup, that's when I was seven months pregnant that
(02:20):
they found that she had a conditionin her heart. Ok and you could
briefly explain to us what are theconditions of any She has, as Malta
said earlier, of dencular census teriousinducement. The congenital Barber Pulmonard and this
(02:43):
one had to make him a trainthat tomillana, gastrofomía and a lobesto mine
of the right form. And youcan explain to us what situations you faced
in your country and Puerto Rico byintegrating the conditions of any first thing.
The first thing was like everything changed. As for the gynecologist, I had
to start by changing the gynecologist,because my gynecologists could not attend to me
(03:06):
and I had to be a specialist. That' s where they move me
to another city and that' swhere we start the process. I had
to go up weekly every week,I had to go get a check-
up then. And another thing wasthat they could no longer do in my
city, since there were no specialists, no care or attention, because I
had to be born. I livedin Ponce To Puerto Rico, I had
(03:30):
to be born in San Juan PuertoRico. Yes or yes, and that
left us about an hour forty minutes. If there was no traffic. We
had already explained to you nativity scenewhen I was interviewed that almost all the
baby procedures are done in the northof the island. Yeah, and that
' s where everything changed, becauseI had to change the first one,
(03:50):
the gynecologist. That' s wherewe started going north of the island.
So with all the specialists I hadto see pediatric cardiologist who was still in
bars, because they had to sortof verify that everything was okay or how
the situation was to know what theyhad when they were born. Then they
program me a caesarean section because ofthe fear that, as I lived quite
(04:12):
far away, I would have anatural birth and they could not allow that
because at that time the paronoma theyhad was not at all encouraging, because
the specialists were all in the areaof San Juan. And then, since
she was from birth to eight monthsin hospital, because she was always in
a hospital, I couldn' thave that experience that it was the appointment
(04:39):
or the surgeries. At first,she spent eight months in a hospital and
what changes it brought to your family' s life, the diagnoses and all
the situations experienced. The first thingwas the most difficult thing, was that,
as a family, although we hadto be united, at the same
time we didn' t have todivide the family like this one saw and
(05:02):
I took care of the girl.My husband became broth of children, because
I have an older child for thatone. Then I was ten years old.
So, as we were so faraway, we couldn' t all
be together, we had to diviveit. And I stayed with her full
in the hospitals for eight months andwent down in eight months I only went
down to my home for three daysand saw my son raise him when my
(05:25):
husband went to visit the girl.So that was the first thing, the
first thing that changed. And thenwe all really had to learn the strength
of medicine, learn about care,and we all had to learn something about
medicine to be able to deliver withit. When she came out, you
(05:46):
can briefly explain to us the conditionsof any Yes, she has it I
saw to mention and then I explainto them that, as they explained to
me, so that we can understandeverything of quercular festo vent accepts the duculatorious
pulmonary Balbert congenital. We Leste andthe first thing they had told me was
(06:08):
like I had a lot of momentsin my heart, which in January of
this year did not Pildoname of theyear two thousand twenty- one put a
small plate to cover the little ones. When they went into surgery, they
realized that, like they were sosmall, they didn' t need to
close, but they did have twobig ones and they decided to put the
(06:31):
little thing to close. And thething about her stenosis, the congenite Balbert
Pulmonary, is that she doesn't have the first one, I'
ve been told like she didn't have the lung valve. But when
I got here in America, itdoes have the lung valve. What he
doesn' t have is like,like they tell him the tap to close
(06:54):
and that the blood kind of holdsand the blood from the down like the
flow pretty much like me squirts.Then, when she, this nation was
already born up high she had onlyher daughter or nothing else for safety,
but after four days they see thatshe already has difficulties, they breathe and
decide in your yard. I wasin tuada for about two months because I
(07:16):
had difficulty breathing and it was becauseof the same condition of the heart as
the blood, the flow of bloodand enough you didn' t allow her
to breathe, like it didn't give her that chance to breathe.
So they realize they can' tmake it out of your fence, they
can' t get the tube orthe fan out of it. They couldn
' t make changes to the fanthe absolute, because she was getting worse.
(07:39):
They decide to do a tracheotomy.So, she knew how to suck
on powdery milk, so they decideto do a gastrostomy. That was three
and a half months. They doall that to you and yet. They
can' t make any changes tothe ventilate. It makes you have some
parameters on the fan pretty high.Then they sell and they realize in a
(08:01):
city stan that she has the rightlung well inflated, well large, so
big that it pushed her heart,moved her place and did not let her
breathe. Well, then they decidethat that is, when they check well,
she also had a lot of timeand told me that it looked like
(08:22):
a knob of a person who smokeda lot, but obviously she didn'
t smoke because she had never leftthe hospital. It was a baby and
it looked like a lung of aperson who smoked all his life. I
can imagine how distressing yours is.Yeah, that was horrible and the hostel
at the time tells me she'll need to do one day, but
in the future, maybe two orthree years. But time passes and we
(08:43):
see that she gives us improvement andthe seodet her a short sodot. Sados
is supposed to be in about thirty, thirty- two. She had him
as short in ninety and she wasgray. His skin color was gray,
but it was because of the highsoda he had. For those of you
who don' t know, it' s the bad gases that have a
body. Then the two of usone day comes and tells me we have
(09:07):
to talk and I feast. Hetells me the future is coming, but
that' s a week gone byand he says the future. He came
up. I told you maybe itwas two to three years. But we
' re not gonna have to makeher a lobby of mine, because she
' s still making her saturation worse. It is agitated its use two very
high. She was bradying me everyday more than I tell you five times.
(09:33):
I' m telling you a few. That was every hour she was
turning black, black, black andher pulse was going down to thirty and
if she didn' t give it, we would quickly clean up the girl
would react to us. That wasdaily. And when it was the oxygenation
of her ninety eighty, the oxygen, the oxygen level in the blood,
the saturation was saturated, this durationhad to be seventy octenta and she had
(09:58):
a saturation to make seventy- fivewith a pseudonym of mintas and they decided
to do the lobestomy in the lowerright lung, and there everything changed from
heaven to earth. His pseudon improveda lot on the other side. The
soldier was too short and the sameday the doctors told me but this is
(10:18):
impossible for me to be making changesto the fan. She just got out
of surgery, but now I've got her on the other side,
I' ve got her with mysilk too short. Then they tried jinx
every hour so they could make change, and every hour they were changing this
fan parameters, because they had itthen very short of the pseudo, and
(10:39):
that' s where she improved quitea bit. But she left here with
a mechanical fan. She didn't breathe on her own anyway. This
content is not intended to replace diagnosticadvice or professional medical treatment. The opinions
(11:01):
expressed in this podcast are not thoseof Horge Unighted Love, but those of
the hosts and guests and they intendto generate a debate on issues related to
congenital heart disease. Before the breakwe learned about the situations of Amy and
(11:26):
her mother. Now Yaylin, youcan explain to us how you deal with
the different conditions Amy has, becauseit' s not just the heart conditions.
We' re talking about a timewhen Emi had a trachotomy and there
was a time when you were alsoin this situation of introducing food. Yeah,
(11:48):
I know pretty well that there wasa lot of situation you had to
deal with and you also mentioned inthe first segment of the hospital with artificial
fan. So, how did youdeal with this? How was the fact
that I know you worked, thatyou had a very different life. He
(12:11):
came to Amy and changed everything.How you had to work with that.
It was pretty hard. The changes. It was a shift from heaven to
earth. I worked, had twojobs in the morning, worked in a
school as an assistant to special childrenand in the evenings I was a manager
in a fafon. I finished workingfurs and Monday I went to the light.
(12:37):
But when she goes out there itwas more complicated, because I have
to take that girl with a mechanicalfan to the house with medical equipment with
different care, that is, wehave to be cleaning the trachotomy see and
that trachotomy does not come out feedingher because of a tube that had it
(13:03):
that was the gastronomy. Then therecomes, then, that I obviously need
help, because I have another,I have another life, that is,
I have a child who also needsme and I have a husband and I
have everything that came a mother's life the house all. So I
(13:24):
applied for the nurse service and camehome as a nurse. But you have
a stranger in your house every dayand it' s something like you want
to do the parts of you butobviously it makes it very difficult what you
took the specialists from the north nearbyI had forty minutes left that was in
(13:46):
callé. I mean, it's harder to deal with the situation,
because it' s an emergency ofthe magnitude that it might have been,
hey, and the fact that itcame with a machine. I don'
t know if you ever had togo to a hospital right here in Ponce.
I say right here, because I' m in Ponce, where Glin
lived, because I do know whatit' s like to come to a
(14:09):
hospital in Ponce and they' reall like and what we do. They
' re doctors, they' respecialists, but it' s not the
expertise they' re usually working on. So if my son, who has
a caldiopathy but didn' t havea machine, had to be amazed or
not know how to work it,because I don' t want to imagine
(14:31):
what it would have been like ifhe had touched you, it was up
to you at some point to havehim in an emergency and to have to
work with him in a hospital thatI didn' t know. It was
the joy that I didn' thave to go to a hospital. And
it is still time that, thanksto the Lord I have faith what it
is to reinforce the emergency that attendsto my daughter, because she is bad.
Well, once here, when Igot here in America, but it
(14:52):
was because they dropped their power buttonand shut it down. But that was
God' s business, because Iknow how to deal with it. They
taught me and when I closed itthere like I planned, I said what
to do. They were shut down. I have no choice but to take
him to a hospital, because theonly time I had to go to a
hospital, but indeed, that wasone of the fears. Even the doctors
(15:18):
told me when she was hospitalized thatwe were discharged. I had a different
trayotomy. It was like more moneythan usual. They' re called flestel,
which is like he moved. Sothe doctor, when they put it
on, she said look, ifyou have to happen anything, you'
re going to go to the nearesthospital. You' re gonna tell her
how they stabilize and get her transferredover here, because nothing else to see
(15:41):
her. They' re going tosay what she' s got in her
neck, because they' re noteven going to know, because that cachotomy
is different. Amis as the fifthperson to use that trayotomy guy here in
Puerto Rico, so no one knows. But with that capiotomy, though it
' s the same, but thankGod, I didn' t have to
base that need to go to hospital, but I had to have the nurse
at home. The day we wenton the first date was like the third
(16:03):
day of her being home. Itwas her first date with the counterpart and
the nurses didn' t want togo with me in my car, in
my personal car, because they wantedto go by ambulance, that they said
I was very delicate like there inmy personal car and I told her well,
I can' t miss these dateshim, because he' s the
specialist. They took her from thehospital. The same doctor was the one
(16:23):
making the appointment. I can't lose her. If you don'
t want to go, then don' t go. I' m leaving
alone with my husband, because Igot away with her and she was like
she had no choice and I saidI was going because I couldn' t
get an ambulance. The ambulance tooktime to approve a medical plan. They
left with the hardest part when wehave to use some middle pl stuff to
(16:44):
be able to have what we understandand know is important to our cillus.
Exactly because they sent as one says, from the nurses who were going here.
They sambiaron como que la más experienciaque he had, even she is
also a teacher of respirator therapy So, then, they sent her to her
and when we got there, astory that happened to us was that when
(17:07):
we got there I told the doctorsI had to suck her up like I
had to remove the secretions from thetrache tomi and she said yes, yes,
give me a moment that I wantto make them a crop of those
secretions that I tell her. Okay, but I see it takes a long
time and gualv and I tell himI have to put it together and he
tells me yes, yes, rightnow. The thing is, like babies,
they didn' t know how tohandle secretions and she was breathing with
a machine when she had secretions init tube that was where she was breathing.
(17:30):
It was as if he was coveredup with oxygen and the girl.
That' s where I got tobrag day. She turned black on me,
passed out there and I the nursethey sent with me or got scared
and stuck back. The doctor stuckto the other wall and I was the
one giving him the PP and thedoctor. The only thing he said was
to call the new one one,that' s to say, the most
(17:52):
experienced nurse, and you were inthe pulmonologist' s office. And you
ended up doing the job. Wowrest even gas anecdotes that we have to
live mothers, that we have achild with conditions. Look. My husband
says the doctor looked like Spiderman whenhe hit the wall, he couldn'
t and more father because he wason the wall and he was the nurse.
L was that I took over thesituation and that I reacted and that
(18:15):
I did not let her intervene.My husband gave that lie. She got
scared too and didn' t knowcoffee yes and I did, because I
don' t know what happened aroundme. All I was focusing on was
tipping the baby and pulling it out. That' s right, this giy
Link, at a certain point you' ll tell Him S and who knows
(18:36):
if you should ever decide to putthem in a book for other mothers who
also go through those same processes.Really. Yeah, I' m asking
Giling. You mentioned here in theUnited States and I said," Right
now, when I made the presentationof the programs that you were based in
Florida, what particular reasons your familyhad to move to the United States.
I didn' t want to cometo the United States, because I felt
(18:59):
my daughter had the best specialists inPuerto Rico, and she still kept telling
me she had the best care inPuerto Rico. But there were earthquakes in
Puerto Rico in January and I livedin apartments, a second floor and my
apartment was greatly affected. Then Icouldn' t live there with the girl.
Then my mom couldn' t takeme in and whoever took me in
(19:22):
was my husband' s grandmother butthey had more than a room available and
we went there. We went tothat available room because we had to solve
it. At the time, Emmystill had the mechanical fan and all I
mean, he had all his medicalequipment and he had his nurses. It
was the four of them sleeping alittle room and my husband was still working,
(19:44):
because my husband worked at the casinofrom the same to the same security
that the casino was still working.Then the tremors began, as they took
several days, but as his bossesknew the situation that he had to work
because it was the only income,they gave priority to him to scald Rock
in the hotel. And all thatthen arose the pandemic, which was all
right there in the middle of thepandea. Yes, it was super fast
(20:08):
and the tremors were in January andalready in March we had the right pandemic.
But when it arises in the pandemicthe hotel closes it because there was
Dawn in Puerto Rico which, likein the world that closed everything. That
' s where my husband runs outof jobs completely. I had already solved
the location because my mom' swife' s sister had a house that
rented it, but at the timeshe had no one and told me that
(20:32):
there to what you solve and gaveit to me for free. I didn
' t have to pay anything,just put it on Wilu. Then I
moved there and had already decided whereto live. But the pandemic arose and
my husband was out of work andthat was the most difficult thing, because
he was the only income of thehouse, because my aunt told me from
the beginning that the earthquakes arose.Jeline told me, go on down here,
for Florida, and I' lltake you here. I told him
(20:53):
no. No, no, no. I don' t want to leave
because I' m fine here despiteeverything, and I was afraid, I
was very afraid to come and venture. So, when we saw that there
was no job anymore, that everythingwas closed, that there were no options,
there was no money, my wifetells me we' re going to
have me, I' m goingto have to go and I said no.
We' re not going all.I ask for authorization from the doctors
(21:15):
and we leave everything. But whenI talk to the doctors, they tell
me no. You can' tleave. I two tor because my wife
doesn' t even know how tobe my master. I can' t
give you permission because we' rein the middle of a pandemic and if
thousands give in to something, thisis where we' re only going to
know, perish with it and giveit a new place where everything has to
give it. You don' tknow her condition. Why you got this,
(21:37):
' cause you got the other one. They didn' t say no,
they wouldn' t give me theauthorization. He was still my husband
who left alone for Florida and Iwas left alone in Puerto Rico, in
a pandemic, and I for thesafety of my children and especially Amy'
s girl. I said I can' t keep in touch with my family,
I can' t have you countingon anyone. I only affected one
nurse and told the supervisor to trainthem give me more than a nurse because
(22:00):
I don' t want the crossoverthat he' s nursed. I can
' t I can' t Ican' t. The nurse can come
between the day after the day Itook him and the others I fought alone
and until three months later I returnedand asked the two tors and they gave
me permission to leave I cefied,but the cardiologist told me you will go.
(22:21):
But I want with this cardiologist,with Javier González in a specific hospital
and thank God, that hospital thatgave thirty minutes from where he lived.
And that' s where I decideto move to Floridas and you don'
t complain. I' m notcomplaining, I' m not complaining.
I' ve had excellent attention inmyself. It' s all been so
fast. Puerto Rico' s DifferenceHere they don' t know more.
(22:41):
In Puerto Rico, it' syour weird bel, a kid with a
fan, a trachotomy, a gastrostomy, and wherever you want you find a
special kid, a kid with somecondition. And in the fact that I
mentioned to her earlier that her feedingtube had gone out, I got her
to the emergency, but my aunttells me you know what. We had
more than two minutes from my aunt' s house says no, no,
(23:02):
no jaly we' re going totake her to the hospital where the doctor
referred you and I because I wasvery nervous, and we went to that.
I didn' t even know whatto do and she told me we
' re going to that hospital becauseif he recommends you there, we'
re going there to open records.We went and the pediaga who attended me
asked me that when I was drivingthere and I said look. I'
ve been here for two weeks.I don' t even have a medical
(23:23):
plan. He tells me to lookright here at the hospital. On the
second floor there is a children's clinic called complement clianing, that is,
complicated boy, special soi in someway, yes, yes, special
children of the same or worse thanmy girl. Then he referred me there
and told me you' re goingto go to this doctor, after we
(23:45):
put the gas and everything to gethim as a pediatrician, as a primary
doctor, I call and the nursesays no. The thing is, for
us, you' re late.You have to send the child' s
medical record already has caplical conditions.Here we affect if not her. I
sent him the whole document option andhe told me the papers had to be
in English. Now the pintos forgivenessthat laughed at me told me it has
(24:07):
to be in English from the hospital. You can' t translate them You
can' t translate them You can' t translate them. I do,
the papers are in English. Okayokay and two days later they call me
yes, that the girl qualified forthere and look I fell better place,
I couldn' t have been there. They channeled me all the help,
all the specialists, but something incredible. Unbelievable, amazing that they could do
(24:30):
everything to me from there. Andsince you found yourself in that kind of
clinic. There were additional diagnoses therein the United States that didn' t
give you. In Puerto Rico youdidn' t change me give me to
her. I had gnosticated her inPuerto Rico and Cephalia make symptoms that I
didn' t mention because, likethis one, it was removed here.
They said no. They sent meto the neurosurgeon and the neurosurgeon tells me
(24:55):
that there is no other Cephalia,although they give him Hydrocephalia. It'
s just that the brains are alldifferent and the girl has open pentricles,
but she doesn' t have anysymptoms, she doesn' t have water,
she has anything. They just havethe pentrécoulos open. And here I
was treated to that diagnosis I hadin Puerto Rico of Rocephaly. And in
Puerto Rico I was told that Ihad no lung valve and here I was
(25:18):
told no, and I' mtold that here she has the lung valve.
They even studied it among a groupof cardiologists, because here it'
s not like in Puerto Rico.Here cardiologists kind of specialize in everyone.
One caldiologist specializes in images, onecaldiorian specializes in echo, the other in
catheterization. And they all met withAmy' s documentation and the tests that
(25:45):
they had done and they realized thatyes, that the girl had the pulmonary
valve, which in Puerto Rico theyhad told me she didn' t have.
They changed those two, but itwas that they were stripped. I
didn' t get any more diagnostics. Thank God, warriors of the heart.
It is a Horth Unite presentation fromGlob and is part of Hogg packst
(26:07):
Network, Hoks de latrea hug andare the acronyms of Horthy Nite de glob
Horge nightd Love is a non-profit organization dedicated to providing resources to the
congenital heart disease community to raise,empower and enrich the lives of members of
(26:29):
our community. If you want toaccess free resources from the congenital heart defects
community, visit our website with geneticheartfex com for information about hospitals treating children,
summer camps for survivors and much more. Speaking of the decision of jailing
(27:02):
and his families to move to Florida, he already links part of the decisions
regarding Amy' s health. Whatother changes this move has brought. It
' s all been for the good. Honestly, I have had better quality
service and quick stress for your condition. I consider it to be that everything
has been for the good, evenfor us as a family, the improvement
(27:25):
of them has been much better.Although we have always been all as a
family involved in the situation of thechild, she has improved, she has
improved many. How good perhaps thetime has been, as perhaps it has
been for the aids, for thetreatments. Also my son, I think
it has been that my son,I have always said that my son is
(27:47):
an old soul. My son hasalways had that capacity for understanding. He
' s never, ever reproached usfor the one we' ve had to
spend more time with the girl,Amy. He, on the contrary,
engages in fights. We' redoing something wrong, something that maybe is
for him. It' s anew question, but and why and he
(28:10):
here has felt, maybe that freedomto even fight with her. Out there
and the band to, he's the one who subdues you and tells
you the directive that has coffee thatdoesn' t have castel, He'
s the one of authority and it' s been a super change. So,
as a family, we started herein a family business, which kind
(28:33):
of gave you the scoop that wealready closed business today to locate it in
a place that is a FOOTCP place, a guauita, a food car,
Puerto Rican city in the United States. We' re going to get there
I took the rich door, thedoor to the United States. Oh,
my God, the mofongo, afund, he' s got a whole
(28:59):
linden to prove it and today Iwas a before here. I was in
a hurry and I was telling myposa Avanza that I have an interview,
because they were looking at the placeto put it and we' re excited
because it' s something new andsomething the whole family is seeing involved and
we all help and it' ssomething for the family. We' ve
(29:21):
always tried to be with the childrenand reward the time wasted those eight months
in the hospital, three years betweentwo tors and appointments. Now we want
to reward you with spending more timethan we' ve always had the time
for them, because they' vebeen things to them. But something that
' s better now. And todayI went and got discharged from you from
(29:45):
ottorino to ringologist. He was dischargedthanks to the gentleman because in May he
had been closed for the gayotomy.And today I went early to follow-
up appointments and the doctor told mealready I can discharge you already you can
put in pool and happy girl becauseshe is crazy to go to a pool
(30:07):
to swim as already vice. Well, well also so many positive things about
those very positive changes. Yeah,that' s very important, it'
s super important. And another thingwe' d like to ask you is
what choice you' ve learned fromthe lieutenant to move for the benefit of
health. Ny I know you toldus that it' s been spectacular for
(30:32):
you for all the services you getand that they have the best doctors they
' re taking care of. Butapart from that, I mean, with
the health you' ve learned,I say that more than anything, what
we' ve learned is the consistencyin going on every day and fighting every
day that if today doesn' twork, I always told people when they
(30:56):
came back to the hospital, because, like me, I' ve been
going to the hospital so long,Mom said to me, talk to this
mom and calm her down. Iused to say look at him. This
is a roller coaster at good timesand not so bad moments, but you
have to go on it itself,on the same mountain with the sub-
ibaja, and I say it isconsistency. One is there every day,
every day. Every day, mychild did not eat by mouth because,
(31:19):
as I said before, she hada sleeve to feed herself. And every
day I spent a year and sixmonths trying to give her food by mouth
every day and she loved us,she spit, she cried, she vomited,
but I didn' t stop doingit one day. Every day I
(31:40):
would settle down with him, Iwould sit the girl next to me and
give her a taste I don't like making faces, because she was
a baby, but it was timefor her to eat. She was two
years old and every day, everyday is one day, until finally and
today I can say that I haveto stop her and tell her you already
let her be eating, because sheeats a lot now and removes the berth.
(32:02):
That was a process too because whenI got here, which was where
I only had a little bit oftrouble, it was with the nomologist that
he wanted to quickly cover up histrachotomy, put on a tapocito so she
could breathe for herself and said no. She, she misses, she can
' t and the day dostos don' t worry. I' m gonna
(32:22):
come in for a couple of monthsand she' s gonna be able to,
and that' s how I startedfirst covering her trachotomy for a minute,
two minutes, every day, everyday. I added him for a
minute, a minute until he addedan hour, two hours, until he
spent twelve hours breathing on his own, without the machine. And that'
(32:43):
s why I say that what I' ve learned is consistency that if you
try it every day it' sgoing to get to the point that everything
is going to be achieved. Andshe' s very willing to do things.
Now we' re talking, becauseshe doesn' t speak well.
She' s got words that mean, she doesn' t speak well.
Little because, since I had thetrunk, I still couldn' t talk.
They took it off less than ayear ago. They took it off
(33:06):
in November and I saw her interestin everything, and that' s why
I returned again the consistency. That' s the best I' ve ever
learned. Excuse me, Jai Linkbelen. It should be noted that Amy'
s father in Puerto Rico was involvedin wrestling, so who inherited the little
girl for the best, because ifthey don' t take care of me,
(33:30):
Amy won' t have to defendher, just like that. It
' s always been a moon tome. That' s where I'
ve been a cheeky fighter. Whenlove did, the doctors told me that
she has always had that one attitude. And the nurses told me that attitude
is the one that keeps her alive. And that' s what they always
told me. That attitude that shehas is the one that keeps her alive
(33:52):
that force, that she is afighter, a fighter of nature. And
what is the proglusis right now andin the next few years, because look
at the doctor now, what youtell me is to have a normal life.
She could start the school in January. So I was broadcasting to have
(34:13):
home pooling or home education and Ialready had it all approved. There was
only one paper missing that the doctorfilmed and that the doctor, the cardiologist
who was like the most she visited, said yes, that he approved of
the home Fullying and the cardiologist tellsme he is Colombian. They tell me
no. I' m not filminganything on him. You' re supposed
(34:37):
to say yes. They tell meno. I want her to have a
completely normal life. I don't want you to raise her to me
as a sick child, because she' s not a sick child, that
is, she has her condition,but she' s not sick anymore.
You sent her to normal school ifyou don' t want to send the
time, because now it' snot mandatory. It is up to the
age of six that it is compulsory, since it endures six years. But
(34:58):
she' s going to a regularschool. I' m not signing your
home school. I want her tohave a completely normal life already, and
that' s what we' retrying to do, that she comes to
a completely normal life with her daily, completely normal routine, like any child
without any condition. And in thefuture she would need the replacement of the
(35:19):
lung valve. But h tol tellsme he doesn' t know when.
He tells me that could be goodin the future. I don' t
know when, but I' dbe surprised she doesn' t need it,
because all these kids need her.So we' re on track right
now. The doctor was so excitedthat he gave her the annual visit and
(35:43):
checked it annually until it' stime to replace her valve. But it
' s the only surgery he'd have left. And let me tell
you that the doctor is very right, because we, the cardiopaths, want
to live a normal life, thatwe know that our life is not normal.
But, for example, it happenedto me that it was when I
(36:06):
was older, that is, whenI was a child. My mom'
s careful, I don' tknow what, and that was good for
me to die. I didn't want to, I wanted to be
normal, like everybody else. Andthe thing about her going to school,
having this contact with other kids,all of that, that' s gonna
(36:27):
do her a lot of good,so bland for that doctor. If she
really loves people, she goes downthe street and like we' re in
America. She learned to say hiand you see her. I don'
t speak English, I speak verybasic and you see her telling everyone.
Hy hy and everybody gets to talkto her and I don' t know
(36:50):
where to hide, because she wantsto, she wants to socialize and I
know she' s gonna be okaywith it. I, obviously, the
fears of the covid I have limitedthe exit, the visits always, but
she is so careful that she knowsthe barce hands, she always has to
have her mask and thank God shehas given her cobia. It' s
(37:14):
been good sun, but I'm scared anyway. This struggle she gave
for eight months deserves, deserves alife within the norm, not just her
struggle at eight months. The strugglethat everyone has entered as a family,
to get ahead, to get towhere they are is definitely at the moment
(37:34):
when they need a moderately normal life. Jali, I ask you as a
Puerto Rican, as the mother ofa child with heart disease, with gene,
but that I stayed here I havenot seen myself thanks to Mr I
have not seen myself in the needto have to move him, as unfortunately,
you had to do it. ButI ask you what advice you would
give to our country' s doctors. According to this experience that you have
(38:00):
lived now, in reality, lookat me sincerely more than to the doctors,
I would say to the administration andthe country, to those who administer
in the country, to the hospitals, because in Puerto Rico there are many
doctors, because many excellent doctors,doctors who do it of vocation because they
pay it is a misery. That' s why many doctors go abroad,
(38:21):
go to the United States, becausethey pay for it, but those doctors
of vocation in Puerto Rico, whodo it because they love it, are
there and are the best doctors.I love my doctors in Puerto Rico and
if one day I hope I don' t have to come back, I
go to close eyes, because Iknow my doctors are there, but they
limit themselves a lot because sometimes theydon' t have the materials, they
(38:43):
don' t have the equipment.That' s why I say that more
than with a council, it wouldbe the administration. I mean, when
I went to a hospital here,which was the only time it was a
good hospital I went for surgery,but an emergency room, I was more
happy to be there and see thatthere were medical equipment on the walls where
everything is released from medical equipment thanrather than being sad because I was in
(39:06):
an emergency room. And then Ifeel sorry for the fact that there is
no such thing in Puerto Rico.There isn' t. There isn'
t. An anector that happened whenmy daughter was in the hospital. I
had to see the respiratory therapists andthe other floors. My daughter was intensive
about going to other floors, stealingherself. They didn' t say.
(39:27):
I went to steal catete at theassumption, which is the gypsy thing.
It makes creations because of the rapiotomy, because there is no one here,
they don' t show up andthey have to go to other floors and
take them away from other patients inorder to give them I knew to see
the doctors. I don' thave the nurses. I don' t
have this material brochure and that's what the Council would just give to
(39:50):
the Sondra Administration. They invest inhealth, health, that is, it
' s giving life, and thenhealth in Puerto Rico is like there won
' t be any money of thelast choice. I give it to hospitals
or I give it to doctors.And it' s kind of sad,
really sad, and you interview thatsituation and my council is more like them
investing in health, because it's amazing when you go to a hospital
(40:15):
here in the United States and yousee technology, and I know there are
other countries that are worse off thanPuerto Rico, but you know that on
my island they' re still sofar behind in technology. As far as
medicine is concerned, I am sad, Dristea, because my daughter had the
joy of having good doctors, goodattentions, but I see others that do
not. So sometimes you lose alot of lives in vie that you lost
(40:37):
a life because you didn' thave a mechanical mentailer. And that'
s you. How can you diea person because there is no medical team.
If the doctors are there to savelife and see that person die in
front of you because there is nomedical equipment, not against. I think
Puerto Rico has to invest in health. The sun is true here invest in
(40:58):
the health of adult children. Thathealth in general does, that vile to
hospitals. I really want to addto this my aunt is an anesthesiologist and
she, when she was coming here, she was back in Puerto Rico and
she was offered a job offensive.Here. That was recently. She'
s feeling like she was in Mayand she was telling me ay yoling that
(41:21):
I don' t know how tolook either at Maira. I tell her
you' re going to be surprisedwhen you see the hospice and I know
why Maira, because here is suppliedeverywhere, in any corner, Here are
things that in Puerto Rico you wereborn and I sat with her conversational after
she filmed and went to her firstday of play and she tells me yes
really that here there are things thatI have to study because I don'
(41:43):
t know how they work. Andeverything here is electronic and here it'
s so different from Puerto Rico.Or that but it' s in that
sense here you invest in technology,in health. Here, you live in
formal here, which is a luxurybecause you have all the attentions. I
spent eight months with my daughter ina hospital and I slept in a piece
of furniture that was putting back achair and there' s a reclining seat
(42:07):
and here I get a bed,I get a bed and food. And
there, in Puerto Rico, Ihad to beg the food because, since
I had more choice of that Iknow him closely and really Belén knows when
we start working with this program,which is one of the particularities that we
want to hear through podcasts and throughthe experiences of mothers, mothers related specialists
(42:29):
is that same thing is that itis known that, particularly children with caldiopathy,
depending on the country where they aregrowing, are passing needs that perhaps
in Puerto Rico is not that theypass such difficult needs as in the country
(42:50):
of Belén, which is why italready has the Belín star Foundation. But
yes, as you wish, thereare some needs, because because out there,
for example, we, in PuertoRico, there are cardiologists, pediatrics,
we have a few pediatric paliólos,but they are all and even now
and peak of our people and maybeone person will say ah but they are
(43:13):
an hour and a peak, nothingmore. But in an emergency situation,
I have to be running for thenose and an hour and an hour is
a time that passes, passes,many things can happen and I do leave,
the specialists, they leave us andthose who really end up suffering this
(43:37):
are these people, our children andall these people who have a compromised health
and do not have the facilities.You had a car so you could travel.
I have a car to travel,but not everyone has a facility,
not everyone right. So it's true in the term where you say
you have to invest in health evenand I know and I' m aware
(43:59):
that in South America, Central America, there' s worse. Like you
say Puerto Rico even. I senta doctor for a patient there when the
child was taken from her trachotomy andI still had left over and I don
' t want to vote for them, because I know there' s someone
(44:19):
who needs it and I got ithere given away. But I know there
are other countries. I' min a bunch of trayotomized kids, and
I' m farting them where Ican get them. I don' t
have any money. Who gives meaway. I had contact with one person
and sent him to Mexico. Isent her cathetel boxes, necklace handle boxes,
(44:40):
lots of stuff. I sent himand I have a lot more here
and I don' t want toundo them, because I know there'
s someone who needs them and voteit breaks my soul. So, back
to the topic of the Councils,it' s amazing that I saw respiratory
therapists who couldn' t deal witha trachotomy. Me and I were telling
(45:00):
them, but come here the tratotomyhas nothing to do with breathing and you
don' t work with respiratory therapy. He tells me yes and I'
m not taught to deal with atrachotomy. Incredibly, respiratory therapists in Puerto
Rico don' t teach them tograpple with a trachiotomy. They can'
t even intubate a patient and here, in the United States, everything that
(45:22):
has to do with respiratory skin,see her in a hospital that will take
care of her. Besides and inyou it' s respiratory therapy that you
' re the one who' severything. And in Puerto Rico, I
taught him respiratory therapy to change atracheotomy, and the doctor tells him to
look to help mom make the change, another cabiotomy, and the hobven went
(45:43):
to me and he says, Mom, I can tell you something. I
tell you, I' ve neverdone this. They kind of didn'
t, he says no, becausethey don' t teach me how to
make change. The water is veryquiet. You help me scream what I
said. We appreciate a lot,your time to tell us about Amy'
s life, the aimy situations weknow she' s a warrior. That
' s how he' s inthe championship. I often told her dad
(46:06):
I was going to see her ina ring because she really took the shower.
But he truly gave it and weappreciate your time, your advice,
all that you have given us atthis time, which will be not only
for our benefit, but for thebenefit of other mothers who are in the
same circumstances as you were and arestill in. So, thank you for
(46:28):
coming to today' s show,thank you for the super proud invitation that
you could really tell me a littlebit about my story and the story of
my warrior in PB and as shesays I conclude this episode of warriors of
the heart. Thank you for listeningto us today. If you have enjoyed
this episode, please review our podcaston our websidew Hearts United clop Ork and
(46:52):
remember friends never give up. Thankyou again for joining us this week.
We hope that you have been inspiredand empowered to become an advocate of the
community of congenital heart defects, withyour hosts Welene Blanton, jenefer Inguina and
(47:16):
Marta Montero. It is produced monthlyand can be heard wherever you have access
to Parkast. The new episodes arebroadcast on the second Saturday of the month
Welcome to your program that warrior isthe heart fighting against frozen caldiopathy. I
am Malta raquel Montero, one ofthe hosts of this program, and I
am also the mother with a warriorof heart. She accompanies me in this
interview Belen Blanton, another warrior witha heart. Today' s program is
about a mother of a Florida-based, warlike Puerto Rican heart. Our
(00:27):
guest is Jailine Wales. We willstart in the first segment knowing more about
the conditions that affect Amy, herdaughter, which are venticular, septal defect,
your alterios or permeable, pulmonary stenosiswith valve engineer and when she was
diastronosticated. In the second segment wewill learn about what motivated Jaylin to move
(00:49):
out of Puerto Rico where he wasliving. And in the third segment he
will tell us the prognosis regarding theconditions of his daughter, im Jailing.
She had one day her baby's heart condition during pregnancy. Amie has
had seven interventions and two catheterizations.Welcome to the bernest of the Jiling heart
(01:10):
Hi Hi. Thank you. Excitedto be here, thank you, thank
you, Saltin. I have acompatriot. We' ve been interviewing people
from different parts of the world andI finally got Puerto Rico, jue Pa
Hola Jailing. I' m anativity scene. In your biography we found
out that your daughter had diagnostic neighborhoods. He' s got several diagnoses You
(01:34):
knew about these conditions. In pregnancyor at birth, you can mention them
clearly. Yeah. In fact,I found out about the pregnancy on a
date of the rut and it wasa surprising thing because Larron didn' t
expect that even and told me thateverything was going well, but that it
(01:56):
was going to be a deeper checkin the heart because of what had happened
after the girl' s illness.For as she was more like how it
was said this man was, nowit was necessary to make as what more
study to avoid conditions. So andI went to my normal date and when
they did the checkup, that's when I was seven months pregnant that
(02:20):
they found that she had a conditionin her heart. Ok and you could
briefly explain to us what are theconditions of any She has, as Malta
said earlier, of dencular census teriousinducement. The congenital Barber Pulmonard and this
(02:43):
one had to make him a trainthat tomillana, gastrofomía and a lobesto mine
of the right form. And youcan explain to us what situations you faced
in your country and Puerto Rico byintegrating the conditions of any first thing.
The first thing was like everything changed. As for the gynecologist, I had
to start by changing the gynecologist,because my gynecologists could not attend to me
(03:06):
and I had to be a specialist. That' s where they move me
to another city and that' swhere we start the process. I had
to go up weekly every week,I had to go get a check-
up then. And another thing wasthat they could no longer do in my
city, since there were no specialists, no care or attention, because I
had to be born. I livedin Ponce To Puerto Rico, I had
(03:30):
to be born in San Juan PuertoRico. Yes or yes, and that
left us about an hour forty minutes. If there was no traffic. We
had already explained to you nativity scenewhen I was interviewed that almost all the
baby procedures are done in the northof the island. Yeah, and that
' s where everything changed, becauseI had to change the first one,
(03:50):
the gynecologist. That' s wherewe started going north of the island.
So with all the specialists I hadto see pediatric cardiologist who was still in
bars, because they had to sortof verify that everything was okay or how
the situation was to know what theyhad when they were born. Then they
program me a caesarean section because ofthe fear that, as I lived quite
(04:12):
far away, I would have anatural birth and they could not allow that
because at that time the paronoma theyhad was not at all encouraging, because
the specialists were all in the areaof San Juan. And then, since
she was from birth to eight monthsin hospital, because she was always in
a hospital, I couldn' thave that experience that it was the appointment
(04:39):
or the surgeries. At first,she spent eight months in a hospital and
what changes it brought to your family' s life, the diagnoses and all
the situations experienced. The first thingwas the most difficult thing, was that,
as a family, although we hadto be united, at the same
time we didn' t have todivide the family like this one saw and
(05:02):
I took care of the girl.My husband became broth of children, because
I have an older child for thatone. Then I was ten years old.
So, as we were so faraway, we couldn' t all
be together, we had to diviveit. And I stayed with her full
in the hospitals for eight months andwent down in eight months I only went
down to my home for three daysand saw my son raise him when my
(05:25):
husband went to visit the girl.So that was the first thing, the
first thing that changed. And thenwe all really had to learn the strength
of medicine, learn about care,and we all had to learn something about
medicine to be able to deliver withit. When she came out, you
(05:46):
can briefly explain to us the conditionsof any Yes, she has it I
saw to mention and then I explainto them that, as they explained to
me, so that we can understandeverything of quercular festo vent accepts the duculatorious
pulmonary Balbert congenital. We Leste andthe first thing they had told me was
(06:08):
like I had a lot of momentsin my heart, which in January of
this year did not Pildoname of theyear two thousand twenty- one put a
small plate to cover the little ones. When they went into surgery, they
realized that, like they were sosmall, they didn' t need to
close, but they did have twobig ones and they decided to put the
(06:31):
little thing to close. And thething about her stenosis, the congenite Balbert
Pulmonary, is that she doesn't have the first one, I'
ve been told like she didn't have the lung valve. But when
I got here in America, itdoes have the lung valve. What he
doesn' t have is like,like they tell him the tap to close
(06:54):
and that the blood kind of holdsand the blood from the down like the
flow pretty much like me squirts.Then, when she, this nation was
already born up high she had onlyher daughter or nothing else for safety,
but after four days they see thatshe already has difficulties, they breathe and
decide in your yard. I wasin tuada for about two months because I
(07:16):
had difficulty breathing and it was becauseof the same condition of the heart as
the blood, the flow of bloodand enough you didn' t allow her
to breathe, like it didn't give her that chance to breathe.
So they realize they can' tmake it out of your fence, they
can' t get the tube orthe fan out of it. They couldn
' t make changes to the fanthe absolute, because she was getting worse.
(07:39):
They decide to do a tracheotomy.So, she knew how to suck
on powdery milk, so they decideto do a gastrostomy. That was three
and a half months. They doall that to you and yet. They
can' t make any changes tothe ventilate. It makes you have some
parameters on the fan pretty high.Then they sell and they realize in a
(08:01):
city stan that she has the rightlung well inflated, well large, so
big that it pushed her heart,moved her place and did not let her
breathe. Well, then they decidethat that is, when they check well,
she also had a lot of timeand told me that it looked like
(08:22):
a knob of a person who smokeda lot, but obviously she didn'
t smoke because she had never leftthe hospital. It was a baby and
it looked like a lung of aperson who smoked all his life. I
can imagine how distressing yours is.Yeah, that was horrible and the hostel
at the time tells me she'll need to do one day, but
in the future, maybe two orthree years. But time passes and we
(08:43):
see that she gives us improvement andthe seodet her a short sodot. Sados
is supposed to be in about thirty, thirty- two. She had him
as short in ninety and she wasgray. His skin color was gray,
but it was because of the highsoda he had. For those of you
who don' t know, it' s the bad gases that have a
body. Then the two of usone day comes and tells me we have
(09:07):
to talk and I feast. Hetells me the future is coming, but
that' s a week gone byand he says the future. He came
up. I told you maybe itwas two to three years. But we
' re not gonna have to makeher a lobby of mine, because she
' s still making her saturation worse. It is agitated its use two very
high. She was bradying me everyday more than I tell you five times.
(09:33):
I' m telling you a few. That was every hour she was
turning black, black, black andher pulse was going down to thirty and
if she didn' t give it, we would quickly clean up the girl
would react to us. That wasdaily. And when it was the oxygenation
of her ninety eighty, the oxygen, the oxygen level in the blood,
the saturation was saturated, this durationhad to be seventy octenta and she had
(09:58):
a saturation to make seventy- fivewith a pseudonym of mintas and they decided
to do the lobestomy in the lowerright lung, and there everything changed from
heaven to earth. His pseudon improveda lot on the other side. The
soldier was too short and the sameday the doctors told me but this is
(10:18):
impossible for me to be making changesto the fan. She just got out
of surgery, but now I've got her on the other side,
I' ve got her with mysilk too short. Then they tried jinx
every hour so they could make change, and every hour they were changing this
fan parameters, because they had itthen very short of the pseudo, and
(10:39):
that' s where she improved quitea bit. But she left here with
a mechanical fan. She didn't breathe on her own anyway. This
content is not intended to replace diagnosticadvice or professional medical treatment. The opinions
(11:01):
expressed in this podcast are not thoseof Horge Unighted Love, but those of
the hosts and guests and they intendto generate a debate on issues related to
congenital heart disease. Before the breakwe learned about the situations of Amy and
(11:26):
her mother. Now Yaylin, youcan explain to us how you deal with
the different conditions Amy has, becauseit' s not just the heart conditions.
We' re talking about a timewhen Emi had a trachotomy and there
was a time when you were alsoin this situation of introducing food. Yeah,
(11:48):
I know pretty well that there wasa lot of situation you had to
deal with and you also mentioned inthe first segment of the hospital with artificial
fan. So, how did youdeal with this? How was the fact
that I know you worked, thatyou had a very different life. He
(12:11):
came to Amy and changed everything.How you had to work with that.
It was pretty hard. The changes. It was a shift from heaven to
earth. I worked, had twojobs in the morning, worked in a
school as an assistant to special childrenand in the evenings I was a manager
in a fafon. I finished workingfurs and Monday I went to the light.
(12:37):
But when she goes out there itwas more complicated, because I have
to take that girl with a mechanicalfan to the house with medical equipment with
different care, that is, wehave to be cleaning the trachotomy see and
that trachotomy does not come out feedingher because of a tube that had it
(13:03):
that was the gastronomy. Then therecomes, then, that I obviously need
help, because I have another,I have another life, that is,
I have a child who also needsme and I have a husband and I
have everything that came a mother's life the house all. So I
(13:24):
applied for the nurse service and camehome as a nurse. But you have
a stranger in your house every dayand it' s something like you want
to do the parts of you butobviously it makes it very difficult what you
took the specialists from the north nearbyI had forty minutes left that was in
(13:46):
callé. I mean, it's harder to deal with the situation,
because it' s an emergency ofthe magnitude that it might have been,
hey, and the fact that itcame with a machine. I don'
t know if you ever had togo to a hospital right here in Ponce.
I say right here, because I' m in Ponce, where Glin
lived, because I do know whatit' s like to come to a
(14:09):
hospital in Ponce and they' reall like and what we do. They
' re doctors, they' respecialists, but it' s not the
expertise they' re usually working on. So if my son, who has
a caldiopathy but didn' t havea machine, had to be amazed or
not know how to work it,because I don' t want to imagine
(14:31):
what it would have been like ifhe had touched you, it was up
to you at some point to havehim in an emergency and to have to
work with him in a hospital thatI didn' t know. It was
the joy that I didn' thave to go to a hospital. And
it is still time that, thanksto the Lord I have faith what it
is to reinforce the emergency that attendsto my daughter, because she is bad.
Well, once here, when Igot here in America, but it
(14:52):
was because they dropped their power buttonand shut it down. But that was
God' s business, because Iknow how to deal with it. They
taught me and when I closed itthere like I planned, I said what
to do. They were shut down. I have no choice but to take
him to a hospital, because theonly time I had to go to a
hospital, but indeed, that wasone of the fears. Even the doctors
(15:18):
told me when she was hospitalized thatwe were discharged. I had a different
trayotomy. It was like more moneythan usual. They' re called flestel,
which is like he moved. Sothe doctor, when they put it
on, she said look, ifyou have to happen anything, you'
re going to go to the nearesthospital. You' re gonna tell her
how they stabilize and get her transferredover here, because nothing else to see
(15:41):
her. They' re going tosay what she' s got in her
neck, because they' re noteven going to know, because that cachotomy
is different. Amis as the fifthperson to use that trayotomy guy here in
Puerto Rico, so no one knows. But with that capiotomy, though it
' s the same, but thankGod, I didn' t have to
base that need to go to hospital, but I had to have the nurse
at home. The day we wenton the first date was like the third
(16:03):
day of her being home. Itwas her first date with the counterpart and
the nurses didn' t want togo with me in my car, in
my personal car, because they wantedto go by ambulance, that they said
I was very delicate like there inmy personal car and I told her well,
I can' t miss these dateshim, because he' s the
specialist. They took her from thehospital. The same doctor was the one
(16:23):
making the appointment. I can't lose her. If you don'
t want to go, then don' t go. I' m leaving
alone with my husband, because Igot away with her and she was like
she had no choice and I saidI was going because I couldn' t
get an ambulance. The ambulance tooktime to approve a medical plan. They
left with the hardest part when wehave to use some middle pl stuff to
(16:44):
be able to have what we understandand know is important to our cillus.
Exactly because they sent as one says, from the nurses who were going here.
They sambiaron como que la más experienciaque he had, even she is
also a teacher of respirator therapy So, then, they sent her to her
and when we got there, astory that happened to us was that when
(17:07):
we got there I told the doctorsI had to suck her up like I
had to remove the secretions from thetrache tomi and she said yes, yes,
give me a moment that I wantto make them a crop of those
secretions that I tell her. Okay, but I see it takes a long
time and gualv and I tell himI have to put it together and he
tells me yes, yes, rightnow. The thing is, like babies,
they didn' t know how tohandle secretions and she was breathing with
a machine when she had secretions init tube that was where she was breathing.
(17:30):
It was as if he was coveredup with oxygen and the girl.
That' s where I got tobrag day. She turned black on me,
passed out there and I the nursethey sent with me or got scared
and stuck back. The doctor stuckto the other wall and I was the
one giving him the PP and thedoctor. The only thing he said was
to call the new one one,that' s to say, the most
(17:52):
experienced nurse, and you were inthe pulmonologist' s office. And you
ended up doing the job. Wowrest even gas anecdotes that we have to
live mothers, that we have achild with conditions. Look. My husband
says the doctor looked like Spiderman whenhe hit the wall, he couldn'
t and more father because he wason the wall and he was the nurse.
L was that I took over thesituation and that I reacted and that
(18:15):
I did not let her intervene.My husband gave that lie. She got
scared too and didn' t knowcoffee yes and I did, because I
don' t know what happened aroundme. All I was focusing on was
tipping the baby and pulling it out. That' s right, this giy
Link, at a certain point you' ll tell Him S and who knows
(18:36):
if you should ever decide to putthem in a book for other mothers who
also go through those same processes.Really. Yeah, I' m asking
Giling. You mentioned here in theUnited States and I said," Right
now, when I made the presentationof the programs that you were based in
Florida, what particular reasons your familyhad to move to the United States.
I didn' t want to cometo the United States, because I felt
(18:59):
my daughter had the best specialists inPuerto Rico, and she still kept telling
me she had the best care inPuerto Rico. But there were earthquakes in
Puerto Rico in January and I livedin apartments, a second floor and my
apartment was greatly affected. Then Icouldn' t live there with the girl.
Then my mom couldn' t takeme in and whoever took me in
(19:22):
was my husband' s grandmother butthey had more than a room available and
we went there. We went tothat available room because we had to solve
it. At the time, Emmystill had the mechanical fan and all I
mean, he had all his medicalequipment and he had his nurses. It
was the four of them sleeping alittle room and my husband was still working,
(19:44):
because my husband worked at the casinofrom the same to the same security
that the casino was still working.Then the tremors began, as they took
several days, but as his bossesknew the situation that he had to work
because it was the only income,they gave priority to him to scald Rock
in the hotel. And all thatthen arose the pandemic, which was all
right there in the middle of thepandea. Yes, it was super fast
(20:08):
and the tremors were in January andalready in March we had the right pandemic.
But when it arises in the pandemicthe hotel closes it because there was
Dawn in Puerto Rico which, likein the world that closed everything. That
' s where my husband runs outof jobs completely. I had already solved
the location because my mom' swife' s sister had a house that
rented it, but at the timeshe had no one and told me that
(20:32):
there to what you solve and gaveit to me for free. I didn
' t have to pay anything,just put it on Wilu. Then I
moved there and had already decided whereto live. But the pandemic arose and
my husband was out of work andthat was the most difficult thing, because
he was the only income of thehouse, because my aunt told me from
the beginning that the earthquakes arose.Jeline told me, go on down here,
for Florida, and I' lltake you here. I told him
(20:53):
no. No, no, no. I don' t want to leave
because I' m fine here despiteeverything, and I was afraid, I
was very afraid to come and venture. So, when we saw that there
was no job anymore, that everythingwas closed, that there were no options,
there was no money, my wifetells me we' re going to
have me, I' m goingto have to go and I said no.
We' re not going all.I ask for authorization from the doctors
(21:15):
and we leave everything. But whenI talk to the doctors, they tell
me no. You can' tleave. I two tor because my wife
doesn' t even know how tobe my master. I can' t
give you permission because we' rein the middle of a pandemic and if
thousands give in to something, thisis where we' re only going to
know, perish with it and giveit a new place where everything has to
give it. You don' tknow her condition. Why you got this,
(21:37):
' cause you got the other one. They didn' t say no,
they wouldn' t give me theauthorization. He was still my husband
who left alone for Florida and Iwas left alone in Puerto Rico, in
a pandemic, and I for thesafety of my children and especially Amy'
s girl. I said I can' t keep in touch with my family,
I can' t have you countingon anyone. I only affected one
nurse and told the supervisor to trainthem give me more than a nurse because
(22:00):
I don' t want the crossoverthat he' s nursed. I can
' t I can' t Ican' t. The nurse can come
between the day after the day Itook him and the others I fought alone
and until three months later I returnedand asked the two tors and they gave
me permission to leave I cefied,but the cardiologist told me you will go.
(22:21):
But I want with this cardiologist,with Javier González in a specific hospital
and thank God, that hospital thatgave thirty minutes from where he lived.
And that' s where I decideto move to Floridas and you don'
t complain. I' m notcomplaining, I' m not complaining.
I' ve had excellent attention inmyself. It' s all been so
fast. Puerto Rico' s DifferenceHere they don' t know more.
(22:41):
In Puerto Rico, it' syour weird bel, a kid with a
fan, a trachotomy, a gastrostomy, and wherever you want you find a
special kid, a kid with somecondition. And in the fact that I
mentioned to her earlier that her feedingtube had gone out, I got her
to the emergency, but my aunttells me you know what. We had
more than two minutes from my aunt' s house says no, no,
(23:02):
no jaly we' re going totake her to the hospital where the doctor
referred you and I because I wasvery nervous, and we went to that.
I didn' t even know whatto do and she told me we
' re going to that hospital becauseif he recommends you there, we'
re going there to open records.We went and the pediaga who attended me
asked me that when I was drivingthere and I said look. I'
ve been here for two weeks.I don' t even have a medical
(23:23):
plan. He tells me to lookright here at the hospital. On the
second floor there is a children's clinic called complement clianing, that is,
complicated boy, special soi in someway, yes, yes, special
children of the same or worse thanmy girl. Then he referred me there
and told me you' re goingto go to this doctor, after we
(23:45):
put the gas and everything to gethim as a pediatrician, as a primary
doctor, I call and the nursesays no. The thing is, for
us, you' re late.You have to send the child' s
medical record already has caplical conditions.Here we affect if not her. I
sent him the whole document option andhe told me the papers had to be
in English. Now the pintos forgivenessthat laughed at me told me it has
(24:07):
to be in English from the hospital. You can' t translate them You
can' t translate them You can' t translate them. I do,
the papers are in English. Okayokay and two days later they call me
yes, that the girl qualified forthere and look I fell better place,
I couldn' t have been there. They channeled me all the help,
all the specialists, but something incredible. Unbelievable, amazing that they could do
(24:30):
everything to me from there. Andsince you found yourself in that kind of
clinic. There were additional diagnoses therein the United States that didn' t
give you. In Puerto Rico youdidn' t change me give me to
her. I had gnosticated her inPuerto Rico and Cephalia make symptoms that I
didn' t mention because, likethis one, it was removed here.
They said no. They sent meto the neurosurgeon and the neurosurgeon tells me
(24:55):
that there is no other Cephalia,although they give him Hydrocephalia. It'
s just that the brains are alldifferent and the girl has open pentricles,
but she doesn' t have anysymptoms, she doesn' t have water,
she has anything. They just havethe pentrécoulos open. And here I
was treated to that diagnosis I hadin Puerto Rico of Rocephaly. And in
Puerto Rico I was told that Ihad no lung valve and here I was
(25:18):
told no, and I' mtold that here she has the lung valve.
They even studied it among a groupof cardiologists, because here it'
s not like in Puerto Rico.Here cardiologists kind of specialize in everyone.
One caldiologist specializes in images, onecaldiorian specializes in echo, the other in
catheterization. And they all met withAmy' s documentation and the tests that
(25:45):
they had done and they realized thatyes, that the girl had the pulmonary
valve, which in Puerto Rico theyhad told me she didn' t have.
They changed those two, but itwas that they were stripped. I
didn' t get any more diagnostics. Thank God, warriors of the heart.
It is a Horth Unite presentation fromGlob and is part of Hogg packst
(26:07):
Network, Hoks de latrea hug andare the acronyms of Horthy Nite de glob
Horge nightd Love is a non-profit organization dedicated to providing resources to the
congenital heart disease community to raise,empower and enrich the lives of members of
(26:29):
our community. If you want toaccess free resources from the congenital heart defects
community, visit our website with geneticheartfex com for information about hospitals treating children,
summer camps for survivors and much more. Speaking of the decision of jailing
(27:02):
and his families to move to Florida, he already links part of the decisions
regarding Amy' s health. Whatother changes this move has brought. It
' s all been for the good. Honestly, I have had better quality
service and quick stress for your condition. I consider it to be that everything
has been for the good, evenfor us as a family, the improvement
(27:25):
of them has been much better.Although we have always been all as a
family involved in the situation of thechild, she has improved, she has
improved many. How good perhaps thetime has been, as perhaps it has
been for the aids, for thetreatments. Also my son, I think
it has been that my son,I have always said that my son is
(27:47):
an old soul. My son hasalways had that capacity for understanding. He
' s never, ever reproached usfor the one we' ve had to
spend more time with the girl,Amy. He, on the contrary,
engages in fights. We' redoing something wrong, something that maybe is
for him. It' s anew question, but and why and he
(28:10):
here has felt, maybe that freedomto even fight with her. Out there
and the band to, he's the one who subdues you and tells
you the directive that has coffee thatdoesn' t have castel, He'
s the one of authority and it' s been a super change. So,
as a family, we started herein a family business, which kind
(28:33):
of gave you the scoop that wealready closed business today to locate it in
a place that is a FOOTCP place, a guauita, a food car,
Puerto Rican city in the United States. We' re going to get there
I took the rich door, thedoor to the United States. Oh,
my God, the mofongo, afund, he' s got a whole
(28:59):
linden to prove it and today Iwas a before here. I was in
a hurry and I was telling myposa Avanza that I have an interview,
because they were looking at the placeto put it and we' re excited
because it' s something new andsomething the whole family is seeing involved and
we all help and it' ssomething for the family. We' ve
(29:21):
always tried to be with the childrenand reward the time wasted those eight months
in the hospital, three years betweentwo tors and appointments. Now we want
to reward you with spending more timethan we' ve always had the time
for them, because they' vebeen things to them. But something that
' s better now. And todayI went and got discharged from you from
(29:45):
ottorino to ringologist. He was dischargedthanks to the gentleman because in May he
had been closed for the gayotomy.And today I went early to follow-
up appointments and the doctor told mealready I can discharge you already you can
put in pool and happy girl becauseshe is crazy to go to a pool
(30:07):
to swim as already vice. Well, well also so many positive things about
those very positive changes. Yeah,that' s very important, it'
s super important. And another thingwe' d like to ask you is
what choice you' ve learned fromthe lieutenant to move for the benefit of
health. Ny I know you toldus that it' s been spectacular for
(30:32):
you for all the services you getand that they have the best doctors they
' re taking care of. Butapart from that, I mean, with
the health you' ve learned,I say that more than anything, what
we' ve learned is the consistencyin going on every day and fighting every
day that if today doesn' twork, I always told people when they
(30:56):
came back to the hospital, because, like me, I' ve been
going to the hospital so long,Mom said to me, talk to this
mom and calm her down. Iused to say look at him. This
is a roller coaster at good timesand not so bad moments, but you
have to go on it itself,on the same mountain with the sub-
ibaja, and I say it isconsistency. One is there every day,
every day. Every day, mychild did not eat by mouth because,
(31:19):
as I said before, she hada sleeve to feed herself. And every
day I spent a year and sixmonths trying to give her food by mouth
every day and she loved us,she spit, she cried, she vomited,
but I didn' t stop doingit one day. Every day I
(31:40):
would settle down with him, Iwould sit the girl next to me and
give her a taste I don't like making faces, because she was
a baby, but it was timefor her to eat. She was two
years old and every day, everyday is one day, until finally and
today I can say that I haveto stop her and tell her you already
let her be eating, because sheeats a lot now and removes the berth.
(32:02):
That was a process too because whenI got here, which was where
I only had a little bit oftrouble, it was with the nomologist that
he wanted to quickly cover up histrachotomy, put on a tapocito so she
could breathe for herself and said no. She, she misses, she can
' t and the day dostos don' t worry. I' m gonna
(32:22):
come in for a couple of monthsand she' s gonna be able to,
and that' s how I startedfirst covering her trachotomy for a minute,
two minutes, every day, everyday. I added him for a
minute, a minute until he addedan hour, two hours, until he
spent twelve hours breathing on his own, without the machine. And that'
(32:43):
s why I say that what I' ve learned is consistency that if you
try it every day it' sgoing to get to the point that everything
is going to be achieved. Andshe' s very willing to do things.
Now we' re talking, becauseshe doesn' t speak well.
She' s got words that mean, she doesn' t speak well.
Little because, since I had thetrunk, I still couldn' t talk.
They took it off less than ayear ago. They took it off
(33:06):
in November and I saw her interestin everything, and that' s why
I returned again the consistency. That' s the best I' ve ever
learned. Excuse me, Jai Linkbelen. It should be noted that Amy'
s father in Puerto Rico was involvedin wrestling, so who inherited the little
girl for the best, because ifthey don' t take care of me,
(33:30):
Amy won' t have to defendher, just like that. It
' s always been a moon tome. That' s where I'
ve been a cheeky fighter. Whenlove did, the doctors told me that
she has always had that one attitude. And the nurses told me that attitude
is the one that keeps her alive. And that' s what they always
told me. That attitude that shehas is the one that keeps her alive
(33:52):
that force, that she is afighter, a fighter of nature. And
what is the proglusis right now andin the next few years, because look
at the doctor now, what youtell me is to have a normal life.
She could start the school in January. So I was broadcasting to have
(34:13):
home pooling or home education and Ialready had it all approved. There was
only one paper missing that the doctorfilmed and that the doctor, the cardiologist
who was like the most she visited, said yes, that he approved of
the home Fullying and the cardiologist tellsme he is Colombian. They tell me
no. I' m not filminganything on him. You' re supposed
(34:37):
to say yes. They tell meno. I want her to have a
completely normal life. I don't want you to raise her to me
as a sick child, because she' s not a sick child, that
is, she has her condition,but she' s not sick anymore.
You sent her to normal school ifyou don' t want to send the
time, because now it' snot mandatory. It is up to the
age of six that it is compulsory, since it endures six years. But
(34:58):
she' s going to a regularschool. I' m not signing your
home school. I want her tohave a completely normal life already, and
that' s what we' retrying to do, that she comes to
a completely normal life with her daily, completely normal routine, like any child
without any condition. And in thefuture she would need the replacement of the
(35:19):
lung valve. But h tol tellsme he doesn' t know when.
He tells me that could be goodin the future. I don' t
know when, but I' dbe surprised she doesn' t need it,
because all these kids need her.So we' re on track right
now. The doctor was so excitedthat he gave her the annual visit and
(35:43):
checked it annually until it' stime to replace her valve. But it
' s the only surgery he'd have left. And let me tell
you that the doctor is very right, because we, the cardiopaths, want
to live a normal life, thatwe know that our life is not normal.
But, for example, it happenedto me that it was when I
(36:06):
was older, that is, whenI was a child. My mom'
s careful, I don' tknow what, and that was good for
me to die. I didn't want to, I wanted to be
normal, like everybody else. Andthe thing about her going to school,
having this contact with other kids,all of that, that' s gonna
(36:27):
do her a lot of good,so bland for that doctor. If she
really loves people, she goes downthe street and like we' re in
America. She learned to say hiand you see her. I don'
t speak English, I speak verybasic and you see her telling everyone.
Hy hy and everybody gets to talkto her and I don' t know
(36:50):
where to hide, because she wantsto, she wants to socialize and I
know she' s gonna be okaywith it. I, obviously, the
fears of the covid I have limitedthe exit, the visits always, but
she is so careful that she knowsthe barce hands, she always has to
have her mask and thank God shehas given her cobia. It' s
(37:14):
been good sun, but I'm scared anyway. This struggle she gave
for eight months deserves, deserves alife within the norm, not just her
struggle at eight months. The strugglethat everyone has entered as a family,
to get ahead, to get towhere they are is definitely at the moment
(37:34):
when they need a moderately normal life. Jali, I ask you as a
Puerto Rican, as the mother ofa child with heart disease, with gene,
but that I stayed here I havenot seen myself thanks to Mr I
have not seen myself in the needto have to move him, as unfortunately,
you had to do it. ButI ask you what advice you would
give to our country' s doctors. According to this experience that you have
(38:00):
lived now, in reality, lookat me sincerely more than to the doctors,
I would say to the administration andthe country, to those who administer
in the country, to the hospitals, because in Puerto Rico there are many
doctors, because many excellent doctors,doctors who do it of vocation because they
pay it is a misery. That' s why many doctors go abroad,
(38:21):
go to the United States, becausethey pay for it, but those doctors
of vocation in Puerto Rico, whodo it because they love it, are
there and are the best doctors.I love my doctors in Puerto Rico and
if one day I hope I don' t have to come back, I
go to close eyes, because Iknow my doctors are there, but they
limit themselves a lot because sometimes theydon' t have the materials, they
(38:43):
don' t have the equipment.That' s why I say that more
than with a council, it wouldbe the administration. I mean, when
I went to a hospital here,which was the only time it was a
good hospital I went for surgery,but an emergency room, I was more
happy to be there and see thatthere were medical equipment on the walls where
everything is released from medical equipment thanrather than being sad because I was in
(39:06):
an emergency room. And then Ifeel sorry for the fact that there is
no such thing in Puerto Rico.There isn' t. There isn'
t. An anector that happened whenmy daughter was in the hospital. I
had to see the respiratory therapists andthe other floors. My daughter was intensive
about going to other floors, stealingherself. They didn' t say.
(39:27):
I went to steal catete at theassumption, which is the gypsy thing.
It makes creations because of the rapiotomy, because there is no one here,
they don' t show up andthey have to go to other floors and
take them away from other patients inorder to give them I knew to see
the doctors. I don' thave the nurses. I don' t
have this material brochure and that's what the Council would just give to
(39:50):
the Sondra Administration. They invest inhealth, health, that is, it
' s giving life, and thenhealth in Puerto Rico is like there won
' t be any money of thelast choice. I give it to hospitals
or I give it to doctors.And it' s kind of sad,
really sad, and you interview thatsituation and my council is more like them
investing in health, because it's amazing when you go to a hospital
(40:15):
here in the United States and yousee technology, and I know there are
other countries that are worse off thanPuerto Rico, but you know that on
my island they' re still sofar behind in technology. As far as
medicine is concerned, I am sad, Dristea, because my daughter had the
joy of having good doctors, goodattentions, but I see others that do
not. So sometimes you lose alot of lives in vie that you lost
(40:37):
a life because you didn' thave a mechanical mentailer. And that'
s you. How can you diea person because there is no medical team.
If the doctors are there to savelife and see that person die in
front of you because there is nomedical equipment, not against. I think
Puerto Rico has to invest in health. The sun is true here invest in
(40:58):
the health of adult children. Thathealth in general does, that vile to
hospitals. I really want to addto this my aunt is an anesthesiologist and
she, when she was coming here, she was back in Puerto Rico and
she was offered a job offensive.Here. That was recently. She'
s feeling like she was in Mayand she was telling me ay yoling that
(41:21):
I don' t know how tolook either at Maira. I tell her
you' re going to be surprisedwhen you see the hospice and I know
why Maira, because here is suppliedeverywhere, in any corner, Here are
things that in Puerto Rico you wereborn and I sat with her conversational after
she filmed and went to her firstday of play and she tells me yes
really that here there are things thatI have to study because I don'
(41:43):
t know how they work. Andeverything here is electronic and here it'
s so different from Puerto Rico.Or that but it' s in that
sense here you invest in technology,in health. Here, you live in
formal here, which is a luxurybecause you have all the attentions. I
spent eight months with my daughter ina hospital and I slept in a piece
of furniture that was putting back achair and there' s a reclining seat
(42:07):
and here I get a bed,I get a bed and food. And
there, in Puerto Rico, Ihad to beg the food because, since
I had more choice of that Iknow him closely and really Belén knows when
we start working with this program,which is one of the particularities that we
want to hear through podcasts and throughthe experiences of mothers, mothers related specialists
(42:29):
is that same thing is that itis known that, particularly children with caldiopathy,
depending on the country where they aregrowing, are passing needs that perhaps
in Puerto Rico is not that theypass such difficult needs as in the country
(42:50):
of Belén, which is why italready has the Belín star Foundation. But
yes, as you wish, thereare some needs, because because out there,
for example, we, in PuertoRico, there are cardiologists, pediatrics,
we have a few pediatric paliólos,but they are all and even now
and peak of our people and maybeone person will say ah but they are
(43:13):
an hour and a peak, nothingmore. But in an emergency situation,
I have to be running for thenose and an hour and an hour is
a time that passes, passes,many things can happen and I do leave,
the specialists, they leave us andthose who really end up suffering this
(43:37):
are these people, our children andall these people who have a compromised health
and do not have the facilities.You had a car so you could travel.
I have a car to travel,but not everyone has a facility,
not everyone right. So it's true in the term where you say
you have to invest in health evenand I know and I' m aware
(43:59):
that in South America, Central America, there' s worse. Like you
say Puerto Rico even. I senta doctor for a patient there when the
child was taken from her trachotomy andI still had left over and I don
' t want to vote for them, because I know there' s someone
(44:19):
who needs it and I got ithere given away. But I know there
are other countries. I' min a bunch of trayotomized kids, and
I' m farting them where Ican get them. I don' t
have any money. Who gives meaway. I had contact with one person
and sent him to Mexico. Isent her cathetel boxes, necklace handle boxes,
(44:40):
lots of stuff. I sent himand I have a lot more here
and I don' t want toundo them, because I know there'
s someone who needs them and voteit breaks my soul. So, back
to the topic of the Councils,it' s amazing that I saw respiratory
therapists who couldn' t deal witha trachotomy. Me and I were telling
(45:00):
them, but come here the tratotomyhas nothing to do with breathing and you
don' t work with respiratory therapy. He tells me yes and I'
m not taught to deal with atrachotomy. Incredibly, respiratory therapists in Puerto
Rico don' t teach them tograpple with a trachiotomy. They can'
t even intubate a patient and here, in the United States, everything that
(45:22):
has to do with respiratory skin,see her in a hospital that will take
care of her. Besides and inyou it' s respiratory therapy that you
' re the one who' severything. And in Puerto Rico, I
taught him respiratory therapy to change atracheotomy, and the doctor tells him to
look to help mom make the change, another cabiotomy, and the hobven went
(45:43):
to me and he says, Mom, I can tell you something. I
tell you, I' ve neverdone this. They kind of didn'
t, he says no, becausethey don' t teach me how to
make change. The water is veryquiet. You help me scream what I
said. We appreciate a lot,your time to tell us about Amy'
s life, the aimy situations weknow she' s a warrior. That
' s how he' s inthe championship. I often told her dad
(46:06):
I was going to see her ina ring because she really took the shower.
But he truly gave it and weappreciate your time, your advice,
all that you have given us atthis time, which will be not only
for our benefit, but for thebenefit of other mothers who are in the
same circumstances as you were and arestill in. So, thank you for
(46:28):
coming to today' s show,thank you for the super proud invitation that
you could really tell me a littlebit about my story and the story of
my warrior in PB and as shesays I conclude this episode of warriors of
the heart. Thank you for listeningto us today. If you have enjoyed
this episode, please review our podcaston our websidew Hearts United clop Ork and
(46:52):
remember friends never give up. Thankyou again for joining us this week.
We hope that you have been inspiredand empowered to become an advocate of the
community of congenital heart defects, withyour hosts Welene Blanton, jenefer Inguina and
(47:16):
Marta Montero. It is produced monthlyand can be heard wherever you have access
to Parkast. The new episodes arebroadcast on the second Saturday of the month
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