April 5, 2024 • 40 mins
In this riveting episode, we walk alongside Cindy's captivating journey of recovery following an emergency brain operation. The unsettling world of Intensive Care and Post Acute Care is explored, providing an innate understanding of the various challenges individuals and their loved ones face. The discussion candidly articulates the emotional turmoil induced by waiting and weathering medical uncertainties while emphatically highlighting the growth of hope, love, and empathy.
Focusing on the intimate conversations and significant decisions that accompany severe medical conditions, this episode explores the reality and necessity of advocating for the loved one struggling for survival. It also throws light on the fragile state of the human life and the unyielding strength of the human spirit in the face of adversity. Cindy's story progresses to the hopeful shift to long-term acute care, symbolizing the start of her recovery journey, punctuated by relief, persistence, and determination.
This episode further unfolds Cindy's day-to-day experiences post-emergency, spotlighting the essential role of her primary caretaker and the nuances of catering to her specific needs. The everyday devotion coupled with miracles restore some of Cindy's faculties, reflecting resiliency at its finest.
Cindy's journey towards recovery represents the significance of unrelenting perseverance, the joy imbued in unexpected progress, and the unsurmountable power of determination.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Okay, in this episode, I'd like to pick up where I may have left off in the previous episodes.
I had talked about Cindy being admitted to an ER,
in fact, two ERs, and then having an emergency operation on her brain to reduce
(00:27):
the swelling, reduce the bleeding, if you will.
What I'd like to do now is paint a picture of Cindy's current state.
This will probably give you guys at least a baseline of where she was and then
how she She progressed in the milestone she reaches in each and every other
(00:54):
episode that I may talk about,
which can be astounding from where she was.
So yeah, after the emergency operation, it was basically a waiting game.
I was accompanied by my brother, who fortunately was in town.
And then I had one of our close friends, Cindy's best friend,
(01:17):
matter of fact, one of our best friends, who was also a neurologist.
So the circle of support I had started out small and grew big really fast.
So I'm thankful for that. And, you know, I would like to thank all the friends
and family and members of care team that have provided support for us.
(01:42):
And like I said, at this point, she's in the ICU.
She was sitting there, or laying there rather, intubated, unventilated.
She couldn't breathe on her own.
She had a drainage tube for her brain because of hydrocephalus.
(02:02):
She had an IV line. She had an arterial line.
She had a catheter. I can't remember if she had any diaper of any sort,
but I do know that more or less she was really dependent on the nurses and everybody else to care for her.
(02:25):
So in essence, she had a lot of track lines in her.
And every day that I was there,
I was, it just seemed like she was just plugged into so many machines and there
was just so much noise alarms going off on a daily basis that it.
(02:48):
I became numb to it, but I can say that after a year and a half,
when I do hear some of these machines or, or I'm reminded of,
you know, the heart monitor or the vital machines and the noise they make,
it does trigger me sometimes because I spent so much time in the hospital dealing with this stuff.
(03:12):
So he was just so fragile at that point in time. I felt completely helpless, sometimes hopeless.
I was just wanting to protect her at all costs.
And I was dealing with just my emotions, the stress of the situation.
(03:35):
And the ability to function and do what was needed to move forward.
On a daily basis, I had to deal with doctors, like several of them,
hospitalists, neurosurgeon, neurologists.
Cardiologists, to name a few, as well as case managers and just conversations
(03:59):
with family and friends about this and that.
So at this point of
time I was either neither sleeping or
eating and remember I had
mentioned that had COVID so I was
definitely not myself but with the adrenaline and everything that was happening
(04:23):
I don't think I even noticed that I was either losing weight or tired or or
sick for that that matter.
I think it just really, this great empathy and sad feeling I had for Cindy,
who was on the bed and I was here walking around, breathing on my own will,
(04:45):
that really made me disheartened.
And every night I struggled going home, but she's a fighter.
I knew that during this whole process, I thought about her a lot,
obviously, because she was the person of interest at the time and And she was
dealing with a lot of stuff.
When she was quote-unquote healthy, she had her own issues that she had to manage as well.
(05:10):
She has, mind you, that she had a congenital heart disease.
She had open heart surgery several times. The last time she had open heart surgery
or heart surgery, she got a mechanical valve and that made her,
that required her to take anticoagulants.
(05:30):
Anticoagulants are basically blood thinners.
So here we are at the ICU and we have a brain bleed or brain hemorrhage.
With those type of medications, it dramatically, automatically it affects you
in a way where your blood just continues to, you continue to bleed out.
And so what we had to do was reverse that medication. In other words,
(05:54):
stop taking it or mitigate it with a medication to reverse the process so that
we can deal with the issue at hand.
And that was the brain bleed. We had to have the blood dissolve or resolve on its own a cord,
allow it to heal, allow the brain to, the swelling to go down,
(06:16):
really to give her a survival fighting chance to recover.
At the very same time, we also had to manage not presenting another problem.
And that is the fact that if she's not on her any coagulants,
then she may at any time experience a blood clot that could trigger get another stroke.
(06:37):
There's a part of this process where I had to manage her medically from an advocate perspective.
Not everything's black and white. The doctors don't have all the answers.
And so with Cindy's case, it was a little bit of an acute scenario where a patient
who were on blood thinners, mechanical heart valve, but then suffer a brain bleed.
(07:03):
Lead, how do we deal with that? How long do we go without medication?
How long do we do this and do that?
So like I said, I was with my brother and my friend and each day that passes,
which was a reigning game because Cindy was in a coma. She was having coughing fits.
(07:25):
And they almost seemed like convulsions. She was just kind of,
you know, her chest rise up and her neck would just kind of pop up in like a
whiplash manner. And it just seemed painful.
But she was just not responsive for one, two, three, five a week.
Each morning was a morning I dread
(07:45):
because those were the rounds with the doctors that would examine her.
Like I mentioned in the previous episode, it was not until the 11th or 12th
day where we saw a flicker of hope,
where her eyes fluttered and they picked out a little bit, which was a game
(08:06):
changer. And I latched onto that.
And it's kind of funny because through the course of this journey,
whatever state or situation presented with, Your goals are different than the next state.
And so at this point, I just wanted her to show some signs of activity,
(08:29):
to say that she was still there, to give us some hope.
Because the hardest thing about living the rest of your life,
being trapped in your body and not being able to do anything,
seems like a nightmare. mirror.
After the point in which she opened her eyes a little bit, every day thereafter,
or every hour, or every portion of the day, I would continue to talk to her,
(08:54):
try to elicit a response from her.
I would say, Sydney, can you open your eyes?
And as the time passed by, she was becoming more and more responsive.
Now, don't get me wrong. It's not like she opened her eyes wide and just just
looked at me dead in the eye.
That certainly did not happen, but she did, you know, she would kind of go from
(09:17):
a quarter open to maybe a half open.
To maybe a three quarters open. I'm not sure she actually had a full open set
of eyes in our time during ICU, but the moments that passed after that time
period, I was trying to respond to her.
And then with family members, we just started a log, a journal,
(09:41):
to document any activity,
time of day, what she did, so that we can have a catalog of events that we can
convey to the professionals, the doctors.
And to track more for ourselves if she was indeed trending upwards or downwards.
(10:05):
That was kind of her current state.
I think we were in the ICU for probably closer to three weeks,
trying to get her medically stable.
I think we were on, since she wasn't on her anticoagulants, we did give her
some other medications to kind of like as a stopgap measure for her,
(10:26):
for her blood thinners, like heparin.
I think the sentiment at the time was, you know, she's, she's showing signs of responding,
but it was unclear whether she was all there because she had been in the coma
for so long without any activity.
So the question was, is she going to, is this as good as it gets or is it going to get better?
(10:51):
Nobody can really, the doctors can't tell you one way or another.
They usually operate on statistics or other case studies and just kind of offer
their best diagnosis, if you will.
Yeah, so she was completely dependent on all of us.
She needed the nurses to turn her every few hours because she was,
(11:13):
quote unquote, lifeless, meaning that she was not really moving at all.
And when you're bed bound, you don't want to get bed sores or skin sores.
And you want motion and you want blood to flow through all your body.
So they would have to turn her, clean her, empty her catheter bags.
(11:37):
And as an advocate, me or my friends or my family members, we would hold them to that.
We'd keep them on a schedule like, oh, it's, well, two hours.
It's time for her to be turned. And we...
Carefully and nervously just watch them do it, you know, and I,
(11:57):
because it was just a fragile situation and I felt that anything we did for
her, she wouldn't be able to communicate how she felt,
whether it hurt her or not.
And you know i don't believe she even had a proper bath slash shower maybe for seven eight months.
(12:19):
That's my that's my guess uh round about there the interesting thing about the
every step you take forward or every step you make the next step is to move
to another spot which mean might be a another hospital, another facility.
And what that usually means is that you either are getting better or you're
(12:48):
kind of status quo and you kind of need to move you along.
Kind of was frustrated by that process during my journey because every place
that we were at, that I would find every exception or build a case with evidence
that we should stay here as long as we can.
Because also every step you take forward also means the intensive care you get
(13:15):
is less and less. It reduces.
So here we are in ICU. So we have all around nurses that might check on you
on the hour or every hour. and kind of,
wash you, turn you, administer meds for you.
(13:36):
And then the next phase, we have less activity because the ratio between nurses
or techs to patients grows more significantly.
In the days that we were waiting for her to respond in the ICU,
more so than she already did, which was the eye-opening, I was talking to her
(14:02):
and then asking her to, can you blink twice if your name is Cindy?
Can you blink once if your name is Ashley?
And I just tested to see if she was there because I needed to know.
I wanted to know what our next steps were because we were at a turning point
(14:23):
where the The medical team wanted to know, wanted us to move on to the next
steps of what that would be.
And the decision next to be made was, do we want to trach her,
which means that give her more secure life support, essentially pull the plug.
(14:44):
I think that was all hard on everybody, especially for me, because nobody should be asked that.
And I was asked this. I, you know, Cindy and I loosely talked about,
you know, what it would be like, are we in a side conversation?
If we were ever a vegetable, we wouldn't want to live this way,
but we never talked in detail.
And that was, and that is something that I like to tell people who haven't talked
(15:10):
about before to talk about in detail, because you may think,
you know, what your partner wants, but you don't know in detail.
As I was dealing with, I was wondering.
Well, do you want me to go off of what the doctors say? Do you want me to try
six months? Do you want me to move forward?
It's going to be a difficult road. Are you, or do you want me to guess if you're how you are?
(15:36):
All those little things are worthwhile discussions while you're healthy and
can communicate with your partner or loved ones.
And so that was a heavy decision weighing on me during that particular point in my journey.
And it was pivotal, pivotal because I made the right decision.
(16:02):
And I think that was because she opened her eyes and we all, and I, myself,
more so than anybody else, had overwhelming love for her that believed in her
because she has been a fighter all her life.
She has had several open heart surgeries that could be life-ending,
(16:25):
yet she always pulled through and she was always optimistic.
She never excused herself in any way and never talked about the dark times at
all. She was very optimistic and was projecting always for the future.
And so part of me deep down knew that she wanted to fight.
(16:47):
I didn't know what her body could do, but I had to give it a chance.
And we had up to this point, I spent so much time fighting.
And I have spent so much time soul-searching myself, talking to people who have
experienced the same situation, trying to figure out how do we need to move forward.
(17:09):
So before we left the ICU, we decided to take her essentially to a tube where
the ventilator can be secured to, so she won't be intubated.
And after which that was done, within a day of doing that, I think the team
was ready for us to go on to the next hospital slash stage.
(17:33):
So some of the things I had to deal with beyond what I have already mentioned
is also obviously my child, taking him to daycare, dealing with his own health issues.
He's an infant that often gets sick, building an immune system,
dealing with eczema, he has food allergies, dealing with stuff like that,
(17:56):
and then talking to insurance,
talking to a case manager, about touring other places, about the next spot for Cindy.
And the next spot would be an LTAC facility, which stands for long-term acute
care. And by all means, don't let that name fool you because it's not really long-term.
(18:19):
It's rather short, actually.
It's just the next phase where they're equipped to handle respiratory issues.
They have nurses on staff. They may have one or two doctors rounding the whole
facility, but the intensive care kind of tapers off from here a little bit.
(18:41):
I felt bittersweet that she had to move on because we were still content with
the fact that she had not fully become high functional again, yet she had this...
Heart condition, and she had all these tracks in her that she wasn't able to
(19:01):
do herself, like, you know, go to the bathroom, take her medication,
that I just kind of felt that, you know, maybe it's too soon for us to go.
But nonetheless, we moved on to the next place.
I had toured around, found one that allowed me to sleep overnight, come and go as I please.
(19:23):
It was near our home and it was a new facility and a conversation with the doctor
that will be on her case there.
And he seemed like he aligned with some of the things that I felt was important
(19:44):
for her. And yeah, we moved on.
But I guess the short story in this part of the journey is that it was a pivotal
point where now she has responded,
woken up, and the healing, the progression can begin.
(20:07):
And although I would say that we're also keeping her alive and...
And getting her better, the worst part is just behind us a little bit.
But there are certainly much, much more challenging struggles going forward.
And so now we're at the LTAC. Here, she had a pretty spacious room.
(20:32):
We started to create a journal, a log for everybody that would would visit, or would give her care.
And I think during this period of time, I held a meeting with friends and family.
To kick off a rotating team of caregivers.
(20:56):
I needed a schedule, basically, because, as I mentioned before,
that having an advocate is very important, especially as you move along the
process, because the intensive care you get isn't always there.
And when you have an advocate, you can act upon care sometimes and react to
(21:17):
things and proact to things as well.
So I created a 24-hour rotation with certain directives, which is to kind of
observe, log, certain things you can care for her, do for her.
You know you can talk to her and you're giving her passive therapy as well which
(21:39):
is when you have a neurological brain injury what everybody experiences is the
lack of something right because.
Neuroscience is a very gray area and affects everybody differently but it's
almost common that you'll be deficient in many areas more so than other and
(22:01):
at this point of time i didn't know what Cindy was deficient in,
other than she was completely emotionless, so she couldn't do anything.
I think time would tell. Everybody was saying that as well.
And so we did passive therapy for her to basically build, or to have neuroplasticities,
just basically to build new neural connections.
(22:22):
Where the virtual connections have been severed by this trauma and build new
connections to hopefully signal to the brain that this connection still exists
from this limb or that limb or this part of your body or internally or externally.
Internally so that you can use them again.
So there's a number of things that, a list of things that we did for Cindy there during her time there.
(22:50):
At this point of time, she only had an IV,
so she was fed nutrients from a bag,
but because she had not progressed to having any movement, we had to start considering
other options for feeding her.
(23:11):
The least invasive one was an NG tube and so that was implanted in her to give
her nutrients straight to her stomach from a gravity bag.
That was performed during that part of the facility.
I think she was there at the LTAC facility for maybe six weeks, more or less.
(23:34):
And I think it was probably a week.
It just seemed like every three days there would be something in the journal
or something that I noticed where she would kind of like, maybe she was twitching her legs.
And I think it was, it basically was involuntary. So it was not something that
(23:55):
she did on her own fruition.
It was not something that that she voluntarily did, which...
We kind of studied a little bit and compared notes, and it just didn't seem
like it was her that was doing it.
But every day, it just seemed like something else was happening in her body,
(24:16):
which was not a bad thing.
And at this point of time, I was getting very desperate to know,
aware of what was going on, but couldn't in any shape, way, or form communicate to us.
So because she could blink, I and my brother, most of our brothers start brainstorming
(24:38):
of a charting system that we could use to communicate with her.
So it was color coded and, you know, there was also short words or phrases.
Phrases and essentially what we did was we would put the board right in front
of her and then i would ask her a series of questions to as a litmus test to
(25:00):
discover if this will be the the next series of questions she would understand
or not so blink twice if you can see the board.
Is this your name blink once or this and that and and mind you she is i also
guess false positives because her body's been fatigued.
(25:21):
It's been under a coma and restless for so long that sometimes blinking twice looks like one blink.
Maybe blinking once looks like half a blink.
So sometimes it was just false positives, but it's what we had to work with.
And I had a board and it would say like, are you in pain? One sticky note said, are you in pain?
(25:42):
Another one would be like, you know, I can't remember.
I still have it to this day, the board somewhere in our home,
but then there would be like a pain level or is it 1, 2, 3, 1 to 10 or something like that.
And what I do is I just kind of take my finger and just point to this and I would say, blink.
(26:03):
Oh, and it also had a board that had the whole alphabet, right?
Right. And so I would tell her, go through each letter and says,
blink, if this is the letter you want.
And so she would kind of tediously try to formulate words and then we'd kind
of decrypt it and, you know, figure out if she was saying something coherent or not.
(26:28):
And there was, there was one point where we're doing this.
And you know the first few times it just didn't
manifest into anything productive but that
didn't stop me from trying and then one time i was tracking her eyes and asking
her can you spell i think it was like hudson and so i went through each letter
(26:53):
is this the letter you and then when i hit h she blinked and.
That brought tears to my eyes because I knew she was processing things now.
She was understanding a little bit more.
And so that was a milestone for us.
You know, I got excited and started almost to a fault, started asking more questions.
(27:14):
And I spent hours, nights, just trying to build a communication line with her. Like, are you in pain?
You know, can you blink once? Can you blink once for yes, twice for no,
or something like that? And are you, do you know where you are?
So every day I would build a header message for everybody who's there, including myself.
(27:38):
I would tell her that today's this date, you're, you're in the,
this facility here at this location,
you suffered from a brain injury, you've been, you know, this is what you can do and cannot do.
And then proceed on with communicating with her after that. There's just a lot
(27:58):
of work put into it as I think back to it now, but when you're deep into it,
it just kind of swallows you up and you're just in the moment.
But few days, I mean, we're starting to get better communication with her as
far as like, now granted, it's
not like we're, like I was speaking to this mic right now and have just,
(28:19):
in a few seconds spat out maybe a couple of sentences.
And no, it takes a while to even build three or four words, right?
Much less a sentence. But we start to kind of build a cadence of,
you know, of understanding.
I wanted to know if she was in pain. I wanted to know how her morale was.
(28:43):
I want to know if she knew who she was. He knew she knew who I was.
If she knew she had a son. And I wanted her to know that he was there and I
was taking care of him and that I was explaining to her that,
you know, her sister was here too.
Her family is here and just stay in there. Stay.
You're doing well. I was trying to put up a very positive and strong face for
(29:07):
her, strong attitude for her when deep down the whole situation was fragile.
I was fragile inside. I, you know, there are many nights I just drove home,
just, you know, disheveled. I just can't believe this was happening to me.
Can't believe this was happening to us. And I can't believe it was happening to Cindy, of all people.
(29:31):
She didn't deserve this. And I was just, just devastated over that.
I was like, why did you do this to my Cindy?
You know, I prayed, I asked that 10 years be taken off my life so that I could
have 10 or 20 more years with her, if that would be an option.
(29:53):
I just talked to myself. I just prayed and just did whatever I could.
I slept at night on the, kind of right next to her, kind of forced myself to dream.
I wasn't getting much sleep, but just hopefully there'll be a sign or something
like that. Just show me the way. It was just all so real.
(30:14):
You know, I go to sleep, as I mentioned before, and I have the recent memory
I have of her is like maybe us doing something and I'm thinking that,
oh, I woke up from a nightmare and now this is reality.
Then to wake up from that and say, oh my gosh, the nightmare is real.
Each day we would just kind of test her, examine her and say,
(30:36):
Sydney, can you feel my hand?
Blink once, blink twice. And, you know, most of the time, at least during that
phase, it was little to no response.
But I remember there was one point at the LTAC where I saw her thumb moved a
(30:56):
little bit more than a twitch.
I said, can you move your thumb up? Now, it's apparent now that she had,
her left side was more affected by the brain injury.
So one side would, you know, twitch more than the other.
But when I saw that, and it was logged, I continued to use that as a baseline.
(31:23):
Line and said cindy can you move your thumb and it was her left thumb and it
would it would it would move it would move like you know very subtly but it
would move and it was based on command.
Oh my gosh that was that was
remarkable because knowing that okay we have
a trajectory here this is trending that maybe she's
(31:46):
regaining some of her faculties and you know
that was how's you know know every little thing
helped but again it was very difficult
to and very tedious to to talk
to her because sometimes i think she would get frustrated just shut down i could
see her you know she'd be so tired i mean she on a daily basis she probably
(32:08):
has one hour one and a half hours of of quote unquote awake time where her eyes
would respond to you other than that she would just be be in slumber.
Again, I think maybe a week or two weeks had elapsed here, and she was showing
signs of, you know, her thumb moving. And then...
(32:30):
All the while, they were managing her respiratory system, trying to get her to breathe on her own.
So because she's straight, she can't really talk.
The wind just escapes out into the tube.
She really couldn't talk, and so it's really just the eye movements.
(32:52):
And I think it was one of the rehab doctors or respiratory doctor,
doctor, I think that had visited her at one given day.
And on that day, she was doing something with her hands.
Let me step back here to say that at this point, she had progressed to now moving.
(33:16):
Her wrist and her right hand more so, her fingers even.
She couldn't move anything else, but she can move slightly her forearm,
her wrist, and partly her fingers.
And so at this point, she was able to kind of touch the foot of Hudson if I brought it to her.
(33:43):
And that was remarkable for her to recognize Hudson and to reach for him.
And she just stared at him.
It's almost like she was looking at a stranger like
but i knew she knew who she was he was
she looked at him and she just
kind of reached for him but you know he was
(34:05):
maybe nine months and he was very fidgety so
he wasn't going to sit there but but i i brought him close gave her his feet
and she would not quite make contact but as much as she could try to make contact
and And that was overwhelming.
(34:26):
You know, we're hitting milestones here.
So then let me now circle back to when one of the doctors was visiting her and
examining her routine exam,
just kind of checking her vitals and pouring some tests to see if she responds
anything any different from any other day.
(34:47):
But he noticed that she was doing something with her hands.
And then he kind of, I walked in and he said, I think she's signing.
And it just dawned on me that she knew sign language. And that's one of the
quirky things about her is that she never used it, but she knew it.
(35:08):
And she even taught me it and taught her sister it.
So I knew it. And I was like, wait.
And as she was signing, she was signing letters. Oh my gosh.
I think she was tired, so I couldn't really get, couldn't decipher what she was saying.
But then the very next day, I tested her and say, hey, can you,
(35:29):
you know, can you show me the letter A?
And she just signed the letter A. I said, show me letter F, F.
And they were aligning with, you know, American Sign Language,
with the letters. I'm like, oh my gosh.
Because she didn't have both hands, she was using one of the hands to kind of
sign all the letters. And fortunately, she had taught me that.
(35:52):
And I don't know if it's just serendipity or whatnot, but I can't believe that
now we have a better way to communicate versus me going through the board,
spelling everything out, and then erasing it multiple times and doing it over
again and trying to guess the words.
It was like Scrabble, or not Scrabble, it was like Hangman trying to figure out the words.
(36:17):
And so eventually we got to the point where she was signing and building words with her hands.
And I printed out a list of sign language letters on the top of her bed so that,
and I think a lot of the visitors and friends were not adept.
Obviously they didn't know it, so it was harder to sign with her and communicate
(36:40):
with her. But now we had a new channel.
Oh my gosh.
It was another milestone. And one of the things that you just dream about,
it's like you can't make this stuff up.
And I just want to sprinkle this with...
(37:02):
This segment with maybe something more lighthearted. She signed,
at one point, Chick-fil-A waffles.
And when we spelled out, it was like, Chick-fil-A waffles? And I said,
do you want Chick-fil-A waffles? And she just blinked.
That was, you know, now she could tell you what she wanted.
(37:27):
Obviously, she couldn't have that because she was on feeding
tube and she was trached but i i hope she understood that because i don't well
i just responded like yeah we'll get it soon enough once you get out of here
and as more weeks came by you know we're doing you know kind of passive therapy
(37:48):
moving her legs and arms massaging for blood flow,
she started to move her neck a little bit more she prop it up
a little bit up and down up and down and you know now
instead of like blinking or signing she can
faintly nod her
head for yes and faintly kind of twitch it left or right for no milestones that
(38:13):
was all these things culminated to you know a huge milestone for us at this point of time.
Of course, I don't want to dismiss the fact that, yes, she was still not able
to walk or make gross movements entirely,
(38:36):
but, you know, we were, we were just, we were just thankful.
And maybe another episode, I'll, I'll get into the perspective,
the real perspective of what I have to deal with compared to what others might
see or others' relationship with Cindy versus me being the active caretaker and active father.
(39:01):
But I'd like to just kind of cap the segment off here just to say that this
podcast has been beneficial for Cindy because a lot of this she does not remember.
And she also finds it cathartic and informative and interesting because of where
(39:23):
she is now and understanding what I went through,
what family went through, what had happened to her,
what stage she was at, what improvements she made, what challenges we dealt with.
So as I'm here talking to you guys, I'm also talking to my wife, Cindy, as well.
(39:45):
You know, you were inspirational.
You were a strong will. You were a fighter.
And, you know, there was tough times. But, you know, you're amazing.
You did very well.
And today she is still fighting. And we still have challenges and battles to contend with.
(40:09):
But, you know, she's amazing.
So I'd like to talk about more milestones, but I'll save that for other episodes
as we progress on forward here.
Again, I want to tell everybody out there to stay safe and hold on to your loved ones.
(40:31):
Music.
Okay, in this episode, I'd like to pick up where I may have left off in the previous episodes.
I had talked about Cindy being admitted to an ER,
in fact, two ERs, and then having an emergency operation on her brain to reduce
(00:27):
the swelling, reduce the bleeding, if you will.
What I'd like to do now is paint a picture of Cindy's current state.
This will probably give you guys at least a baseline of where she was and then
how she She progressed in the milestone she reaches in each and every other
(00:54):
episode that I may talk about,
which can be astounding from where she was.
So yeah, after the emergency operation, it was basically a waiting game.
I was accompanied by my brother, who fortunately was in town.
And then I had one of our close friends, Cindy's best friend,
(01:17):
matter of fact, one of our best friends, who was also a neurologist.
So the circle of support I had started out small and grew big really fast.
So I'm thankful for that. And, you know, I would like to thank all the friends
and family and members of care team that have provided support for us.
(01:42):
And like I said, at this point, she's in the ICU.
She was sitting there, or laying there rather, intubated, unventilated.
She couldn't breathe on her own.
She had a drainage tube for her brain because of hydrocephalus.
(02:02):
She had an IV line. She had an arterial line.
She had a catheter. I can't remember if she had any diaper of any sort,
but I do know that more or less she was really dependent on the nurses and everybody else to care for her.
(02:25):
So in essence, she had a lot of track lines in her.
And every day that I was there,
I was, it just seemed like she was just plugged into so many machines and there
was just so much noise alarms going off on a daily basis that it.
(02:48):
I became numb to it, but I can say that after a year and a half,
when I do hear some of these machines or, or I'm reminded of,
you know, the heart monitor or the vital machines and the noise they make,
it does trigger me sometimes because I spent so much time in the hospital dealing with this stuff.
(03:12):
So he was just so fragile at that point in time. I felt completely helpless, sometimes hopeless.
I was just wanting to protect her at all costs.
And I was dealing with just my emotions, the stress of the situation.
(03:35):
And the ability to function and do what was needed to move forward.
On a daily basis, I had to deal with doctors, like several of them,
hospitalists, neurosurgeon, neurologists.
Cardiologists, to name a few, as well as case managers and just conversations
(03:59):
with family and friends about this and that.
So at this point of
time I was either neither sleeping or
eating and remember I had
mentioned that had COVID so I was
definitely not myself but with the adrenaline and everything that was happening
(04:23):
I don't think I even noticed that I was either losing weight or tired or or
sick for that that matter.
I think it just really, this great empathy and sad feeling I had for Cindy,
who was on the bed and I was here walking around, breathing on my own will,
(04:45):
that really made me disheartened.
And every night I struggled going home, but she's a fighter.
I knew that during this whole process, I thought about her a lot,
obviously, because she was the person of interest at the time and And she was
dealing with a lot of stuff.
When she was quote-unquote healthy, she had her own issues that she had to manage as well.
(05:10):
She has, mind you, that she had a congenital heart disease.
She had open heart surgery several times. The last time she had open heart surgery
or heart surgery, she got a mechanical valve and that made her,
that required her to take anticoagulants.
(05:30):
Anticoagulants are basically blood thinners.
So here we are at the ICU and we have a brain bleed or brain hemorrhage.
With those type of medications, it dramatically, automatically it affects you
in a way where your blood just continues to, you continue to bleed out.
And so what we had to do was reverse that medication. In other words,
(05:54):
stop taking it or mitigate it with a medication to reverse the process so that
we can deal with the issue at hand.
And that was the brain bleed. We had to have the blood dissolve or resolve on its own a cord,
allow it to heal, allow the brain to, the swelling to go down,
(06:16):
really to give her a survival fighting chance to recover.
At the very same time, we also had to manage not presenting another problem.
And that is the fact that if she's not on her any coagulants,
then she may at any time experience a blood clot that could trigger get another stroke.
(06:37):
There's a part of this process where I had to manage her medically from an advocate perspective.
Not everything's black and white. The doctors don't have all the answers.
And so with Cindy's case, it was a little bit of an acute scenario where a patient
who were on blood thinners, mechanical heart valve, but then suffer a brain bleed.
(07:03):
Lead, how do we deal with that? How long do we go without medication?
How long do we do this and do that?
So like I said, I was with my brother and my friend and each day that passes,
which was a reigning game because Cindy was in a coma. She was having coughing fits.
(07:25):
And they almost seemed like convulsions. She was just kind of,
you know, her chest rise up and her neck would just kind of pop up in like a
whiplash manner. And it just seemed painful.
But she was just not responsive for one, two, three, five a week.
Each morning was a morning I dread
(07:45):
because those were the rounds with the doctors that would examine her.
Like I mentioned in the previous episode, it was not until the 11th or 12th
day where we saw a flicker of hope,
where her eyes fluttered and they picked out a little bit, which was a game
(08:06):
changer. And I latched onto that.
And it's kind of funny because through the course of this journey,
whatever state or situation presented with, Your goals are different than the next state.
And so at this point, I just wanted her to show some signs of activity,
(08:29):
to say that she was still there, to give us some hope.
Because the hardest thing about living the rest of your life,
being trapped in your body and not being able to do anything,
seems like a nightmare. mirror.
After the point in which she opened her eyes a little bit, every day thereafter,
or every hour, or every portion of the day, I would continue to talk to her,
(08:54):
try to elicit a response from her.
I would say, Sydney, can you open your eyes?
And as the time passed by, she was becoming more and more responsive.
Now, don't get me wrong. It's not like she opened her eyes wide and just just
looked at me dead in the eye.
That certainly did not happen, but she did, you know, she would kind of go from
(09:17):
a quarter open to maybe a half open.
To maybe a three quarters open. I'm not sure she actually had a full open set
of eyes in our time during ICU, but the moments that passed after that time
period, I was trying to respond to her.
And then with family members, we just started a log, a journal,
(09:41):
to document any activity,
time of day, what she did, so that we can have a catalog of events that we can
convey to the professionals, the doctors.
And to track more for ourselves if she was indeed trending upwards or downwards.
(10:05):
That was kind of her current state.
I think we were in the ICU for probably closer to three weeks,
trying to get her medically stable.
I think we were on, since she wasn't on her anticoagulants, we did give her
some other medications to kind of like as a stopgap measure for her,
(10:26):
for her blood thinners, like heparin.
I think the sentiment at the time was, you know, she's, she's showing signs of responding,
but it was unclear whether she was all there because she had been in the coma
for so long without any activity.
So the question was, is she going to, is this as good as it gets or is it going to get better?
(10:51):
Nobody can really, the doctors can't tell you one way or another.
They usually operate on statistics or other case studies and just kind of offer
their best diagnosis, if you will.
Yeah, so she was completely dependent on all of us.
She needed the nurses to turn her every few hours because she was,
(11:13):
quote unquote, lifeless, meaning that she was not really moving at all.
And when you're bed bound, you don't want to get bed sores or skin sores.
And you want motion and you want blood to flow through all your body.
So they would have to turn her, clean her, empty her catheter bags.
(11:37):
And as an advocate, me or my friends or my family members, we would hold them to that.
We'd keep them on a schedule like, oh, it's, well, two hours.
It's time for her to be turned. And we...
Carefully and nervously just watch them do it, you know, and I,
(11:57):
because it was just a fragile situation and I felt that anything we did for
her, she wouldn't be able to communicate how she felt,
whether it hurt her or not.
And you know i don't believe she even had a proper bath slash shower maybe for seven eight months.
(12:19):
That's my that's my guess uh round about there the interesting thing about the
every step you take forward or every step you make the next step is to move
to another spot which mean might be a another hospital, another facility.
And what that usually means is that you either are getting better or you're
(12:48):
kind of status quo and you kind of need to move you along.
Kind of was frustrated by that process during my journey because every place
that we were at, that I would find every exception or build a case with evidence
that we should stay here as long as we can.
Because also every step you take forward also means the intensive care you get
(13:15):
is less and less. It reduces.
So here we are in ICU. So we have all around nurses that might check on you
on the hour or every hour. and kind of,
wash you, turn you, administer meds for you.
(13:36):
And then the next phase, we have less activity because the ratio between nurses
or techs to patients grows more significantly.
In the days that we were waiting for her to respond in the ICU,
more so than she already did, which was the eye-opening, I was talking to her
(14:02):
and then asking her to, can you blink twice if your name is Cindy?
Can you blink once if your name is Ashley?
And I just tested to see if she was there because I needed to know.
I wanted to know what our next steps were because we were at a turning point
(14:23):
where the The medical team wanted to know, wanted us to move on to the next
steps of what that would be.
And the decision next to be made was, do we want to trach her,
which means that give her more secure life support, essentially pull the plug.
(14:44):
I think that was all hard on everybody, especially for me, because nobody should be asked that.
And I was asked this. I, you know, Cindy and I loosely talked about,
you know, what it would be like, are we in a side conversation?
If we were ever a vegetable, we wouldn't want to live this way,
but we never talked in detail.
And that was, and that is something that I like to tell people who haven't talked
(15:10):
about before to talk about in detail, because you may think,
you know, what your partner wants, but you don't know in detail.
As I was dealing with, I was wondering.
Well, do you want me to go off of what the doctors say? Do you want me to try
six months? Do you want me to move forward?
It's going to be a difficult road. Are you, or do you want me to guess if you're how you are?
(15:36):
All those little things are worthwhile discussions while you're healthy and
can communicate with your partner or loved ones.
And so that was a heavy decision weighing on me during that particular point in my journey.
And it was pivotal, pivotal because I made the right decision.
(16:02):
And I think that was because she opened her eyes and we all, and I, myself,
more so than anybody else, had overwhelming love for her that believed in her
because she has been a fighter all her life.
She has had several open heart surgeries that could be life-ending,
(16:25):
yet she always pulled through and she was always optimistic.
She never excused herself in any way and never talked about the dark times at
all. She was very optimistic and was projecting always for the future.
And so part of me deep down knew that she wanted to fight.
(16:47):
I didn't know what her body could do, but I had to give it a chance.
And we had up to this point, I spent so much time fighting.
And I have spent so much time soul-searching myself, talking to people who have
experienced the same situation, trying to figure out how do we need to move forward.
(17:09):
So before we left the ICU, we decided to take her essentially to a tube where
the ventilator can be secured to, so she won't be intubated.
And after which that was done, within a day of doing that, I think the team
was ready for us to go on to the next hospital slash stage.
(17:33):
So some of the things I had to deal with beyond what I have already mentioned
is also obviously my child, taking him to daycare, dealing with his own health issues.
He's an infant that often gets sick, building an immune system,
dealing with eczema, he has food allergies, dealing with stuff like that,
(17:56):
and then talking to insurance,
talking to a case manager, about touring other places, about the next spot for Cindy.
And the next spot would be an LTAC facility, which stands for long-term acute
care. And by all means, don't let that name fool you because it's not really long-term.
(18:19):
It's rather short, actually.
It's just the next phase where they're equipped to handle respiratory issues.
They have nurses on staff. They may have one or two doctors rounding the whole
facility, but the intensive care kind of tapers off from here a little bit.
(18:41):
I felt bittersweet that she had to move on because we were still content with
the fact that she had not fully become high functional again, yet she had this...
Heart condition, and she had all these tracks in her that she wasn't able to
(19:01):
do herself, like, you know, go to the bathroom, take her medication,
that I just kind of felt that, you know, maybe it's too soon for us to go.
But nonetheless, we moved on to the next place.
I had toured around, found one that allowed me to sleep overnight, come and go as I please.
(19:23):
It was near our home and it was a new facility and a conversation with the doctor
that will be on her case there.
And he seemed like he aligned with some of the things that I felt was important
(19:44):
for her. And yeah, we moved on.
But I guess the short story in this part of the journey is that it was a pivotal
point where now she has responded,
woken up, and the healing, the progression can begin.
(20:07):
And although I would say that we're also keeping her alive and...
And getting her better, the worst part is just behind us a little bit.
But there are certainly much, much more challenging struggles going forward.
And so now we're at the LTAC. Here, she had a pretty spacious room.
(20:32):
We started to create a journal, a log for everybody that would would visit, or would give her care.
And I think during this period of time, I held a meeting with friends and family.
To kick off a rotating team of caregivers.
(20:56):
I needed a schedule, basically, because, as I mentioned before,
that having an advocate is very important, especially as you move along the
process, because the intensive care you get isn't always there.
And when you have an advocate, you can act upon care sometimes and react to
(21:17):
things and proact to things as well.
So I created a 24-hour rotation with certain directives, which is to kind of
observe, log, certain things you can care for her, do for her.
You know you can talk to her and you're giving her passive therapy as well which
(21:39):
is when you have a neurological brain injury what everybody experiences is the
lack of something right because.
Neuroscience is a very gray area and affects everybody differently but it's
almost common that you'll be deficient in many areas more so than other and
(22:01):
at this point of time i didn't know what Cindy was deficient in,
other than she was completely emotionless, so she couldn't do anything.
I think time would tell. Everybody was saying that as well.
And so we did passive therapy for her to basically build, or to have neuroplasticities,
just basically to build new neural connections.
(22:22):
Where the virtual connections have been severed by this trauma and build new
connections to hopefully signal to the brain that this connection still exists
from this limb or that limb or this part of your body or internally or externally.
Internally so that you can use them again.
So there's a number of things that, a list of things that we did for Cindy there during her time there.
(22:50):
At this point of time, she only had an IV,
so she was fed nutrients from a bag,
but because she had not progressed to having any movement, we had to start considering
other options for feeding her.
(23:11):
The least invasive one was an NG tube and so that was implanted in her to give
her nutrients straight to her stomach from a gravity bag.
That was performed during that part of the facility.
I think she was there at the LTAC facility for maybe six weeks, more or less.
(23:34):
And I think it was probably a week.
It just seemed like every three days there would be something in the journal
or something that I noticed where she would kind of like, maybe she was twitching her legs.
And I think it was, it basically was involuntary. So it was not something that
(23:55):
she did on her own fruition.
It was not something that that she voluntarily did, which...
We kind of studied a little bit and compared notes, and it just didn't seem
like it was her that was doing it.
But every day, it just seemed like something else was happening in her body,
(24:16):
which was not a bad thing.
And at this point of time, I was getting very desperate to know,
aware of what was going on, but couldn't in any shape, way, or form communicate to us.
So because she could blink, I and my brother, most of our brothers start brainstorming
(24:38):
of a charting system that we could use to communicate with her.
So it was color coded and, you know, there was also short words or phrases.
Phrases and essentially what we did was we would put the board right in front
of her and then i would ask her a series of questions to as a litmus test to
(25:00):
discover if this will be the the next series of questions she would understand
or not so blink twice if you can see the board.
Is this your name blink once or this and that and and mind you she is i also
guess false positives because her body's been fatigued.
(25:21):
It's been under a coma and restless for so long that sometimes blinking twice looks like one blink.
Maybe blinking once looks like half a blink.
So sometimes it was just false positives, but it's what we had to work with.
And I had a board and it would say like, are you in pain? One sticky note said, are you in pain?
(25:42):
Another one would be like, you know, I can't remember.
I still have it to this day, the board somewhere in our home,
but then there would be like a pain level or is it 1, 2, 3, 1 to 10 or something like that.
And what I do is I just kind of take my finger and just point to this and I would say, blink.
(26:03):
Oh, and it also had a board that had the whole alphabet, right?
Right. And so I would tell her, go through each letter and says,
blink, if this is the letter you want.
And so she would kind of tediously try to formulate words and then we'd kind
of decrypt it and, you know, figure out if she was saying something coherent or not.
(26:28):
And there was, there was one point where we're doing this.
And you know the first few times it just didn't
manifest into anything productive but that
didn't stop me from trying and then one time i was tracking her eyes and asking
her can you spell i think it was like hudson and so i went through each letter
(26:53):
is this the letter you and then when i hit h she blinked and.
That brought tears to my eyes because I knew she was processing things now.
She was understanding a little bit more.
And so that was a milestone for us.
You know, I got excited and started almost to a fault, started asking more questions.
(27:14):
And I spent hours, nights, just trying to build a communication line with her. Like, are you in pain?
You know, can you blink once? Can you blink once for yes, twice for no,
or something like that? And are you, do you know where you are?
So every day I would build a header message for everybody who's there, including myself.
(27:38):
I would tell her that today's this date, you're, you're in the,
this facility here at this location,
you suffered from a brain injury, you've been, you know, this is what you can do and cannot do.
And then proceed on with communicating with her after that. There's just a lot
(27:58):
of work put into it as I think back to it now, but when you're deep into it,
it just kind of swallows you up and you're just in the moment.
But few days, I mean, we're starting to get better communication with her as
far as like, now granted, it's
not like we're, like I was speaking to this mic right now and have just,
(28:19):
in a few seconds spat out maybe a couple of sentences.
And no, it takes a while to even build three or four words, right?
Much less a sentence. But we start to kind of build a cadence of,
you know, of understanding.
I wanted to know if she was in pain. I wanted to know how her morale was.
(28:43):
I want to know if she knew who she was. He knew she knew who I was.
If she knew she had a son. And I wanted her to know that he was there and I
was taking care of him and that I was explaining to her that,
you know, her sister was here too.
Her family is here and just stay in there. Stay.
You're doing well. I was trying to put up a very positive and strong face for
(29:07):
her, strong attitude for her when deep down the whole situation was fragile.
I was fragile inside. I, you know, there are many nights I just drove home,
just, you know, disheveled. I just can't believe this was happening to me.
Can't believe this was happening to us. And I can't believe it was happening to Cindy, of all people.
(29:31):
She didn't deserve this. And I was just, just devastated over that.
I was like, why did you do this to my Cindy?
You know, I prayed, I asked that 10 years be taken off my life so that I could
have 10 or 20 more years with her, if that would be an option.
(29:53):
I just talked to myself. I just prayed and just did whatever I could.
I slept at night on the, kind of right next to her, kind of forced myself to dream.
I wasn't getting much sleep, but just hopefully there'll be a sign or something
like that. Just show me the way. It was just all so real.
(30:14):
You know, I go to sleep, as I mentioned before, and I have the recent memory
I have of her is like maybe us doing something and I'm thinking that,
oh, I woke up from a nightmare and now this is reality.
Then to wake up from that and say, oh my gosh, the nightmare is real.
Each day we would just kind of test her, examine her and say,
(30:36):
Sydney, can you feel my hand?
Blink once, blink twice. And, you know, most of the time, at least during that
phase, it was little to no response.
But I remember there was one point at the LTAC where I saw her thumb moved a
(30:56):
little bit more than a twitch.
I said, can you move your thumb up? Now, it's apparent now that she had,
her left side was more affected by the brain injury.
So one side would, you know, twitch more than the other.
But when I saw that, and it was logged, I continued to use that as a baseline.
(31:23):
Line and said cindy can you move your thumb and it was her left thumb and it
would it would it would move it would move like you know very subtly but it
would move and it was based on command.
Oh my gosh that was that was
remarkable because knowing that okay we have
a trajectory here this is trending that maybe she's
(31:46):
regaining some of her faculties and you know
that was how's you know know every little thing
helped but again it was very difficult
to and very tedious to to talk
to her because sometimes i think she would get frustrated just shut down i could
see her you know she'd be so tired i mean she on a daily basis she probably
(32:08):
has one hour one and a half hours of of quote unquote awake time where her eyes
would respond to you other than that she would just be be in slumber.
Again, I think maybe a week or two weeks had elapsed here, and she was showing
signs of, you know, her thumb moving. And then...
(32:30):
All the while, they were managing her respiratory system, trying to get her to breathe on her own.
So because she's straight, she can't really talk.
The wind just escapes out into the tube.
She really couldn't talk, and so it's really just the eye movements.
(32:52):
And I think it was one of the rehab doctors or respiratory doctor,
doctor, I think that had visited her at one given day.
And on that day, she was doing something with her hands.
Let me step back here to say that at this point, she had progressed to now moving.
(33:16):
Her wrist and her right hand more so, her fingers even.
She couldn't move anything else, but she can move slightly her forearm,
her wrist, and partly her fingers.
And so at this point, she was able to kind of touch the foot of Hudson if I brought it to her.
(33:43):
And that was remarkable for her to recognize Hudson and to reach for him.
And she just stared at him.
It's almost like she was looking at a stranger like
but i knew she knew who she was he was
she looked at him and she just
kind of reached for him but you know he was
(34:05):
maybe nine months and he was very fidgety so
he wasn't going to sit there but but i i brought him close gave her his feet
and she would not quite make contact but as much as she could try to make contact
and And that was overwhelming.
(34:26):
You know, we're hitting milestones here.
So then let me now circle back to when one of the doctors was visiting her and
examining her routine exam,
just kind of checking her vitals and pouring some tests to see if she responds
anything any different from any other day.
(34:47):
But he noticed that she was doing something with her hands.
And then he kind of, I walked in and he said, I think she's signing.
And it just dawned on me that she knew sign language. And that's one of the
quirky things about her is that she never used it, but she knew it.
(35:08):
And she even taught me it and taught her sister it.
So I knew it. And I was like, wait.
And as she was signing, she was signing letters. Oh my gosh.
I think she was tired, so I couldn't really get, couldn't decipher what she was saying.
But then the very next day, I tested her and say, hey, can you,
(35:29):
you know, can you show me the letter A?
And she just signed the letter A. I said, show me letter F, F.
And they were aligning with, you know, American Sign Language,
with the letters. I'm like, oh my gosh.
Because she didn't have both hands, she was using one of the hands to kind of
sign all the letters. And fortunately, she had taught me that.
(35:52):
And I don't know if it's just serendipity or whatnot, but I can't believe that
now we have a better way to communicate versus me going through the board,
spelling everything out, and then erasing it multiple times and doing it over
again and trying to guess the words.
It was like Scrabble, or not Scrabble, it was like Hangman trying to figure out the words.
(36:17):
And so eventually we got to the point where she was signing and building words with her hands.
And I printed out a list of sign language letters on the top of her bed so that,
and I think a lot of the visitors and friends were not adept.
Obviously they didn't know it, so it was harder to sign with her and communicate
(36:40):
with her. But now we had a new channel.
Oh my gosh.
It was another milestone. And one of the things that you just dream about,
it's like you can't make this stuff up.
And I just want to sprinkle this with...
(37:02):
This segment with maybe something more lighthearted. She signed,
at one point, Chick-fil-A waffles.
And when we spelled out, it was like, Chick-fil-A waffles? And I said,
do you want Chick-fil-A waffles? And she just blinked.
That was, you know, now she could tell you what she wanted.
(37:27):
Obviously, she couldn't have that because she was on feeding
tube and she was trached but i i hope she understood that because i don't well
i just responded like yeah we'll get it soon enough once you get out of here
and as more weeks came by you know we're doing you know kind of passive therapy
(37:48):
moving her legs and arms massaging for blood flow,
she started to move her neck a little bit more she prop it up
a little bit up and down up and down and you know now
instead of like blinking or signing she can
faintly nod her
head for yes and faintly kind of twitch it left or right for no milestones that
(38:13):
was all these things culminated to you know a huge milestone for us at this point of time.
Of course, I don't want to dismiss the fact that, yes, she was still not able
to walk or make gross movements entirely,
(38:36):
but, you know, we were, we were just, we were just thankful.
And maybe another episode, I'll, I'll get into the perspective,
the real perspective of what I have to deal with compared to what others might
see or others' relationship with Cindy versus me being the active caretaker and active father.
(39:01):
But I'd like to just kind of cap the segment off here just to say that this
podcast has been beneficial for Cindy because a lot of this she does not remember.
And she also finds it cathartic and informative and interesting because of where
(39:23):
she is now and understanding what I went through,
what family went through, what had happened to her,
what stage she was at, what improvements she made, what challenges we dealt with.
So as I'm here talking to you guys, I'm also talking to my wife, Cindy, as well.
(39:45):
You know, you were inspirational.
You were a strong will. You were a fighter.
And, you know, there was tough times. But, you know, you're amazing.
You did very well.
And today she is still fighting. And we still have challenges and battles to contend with.
(40:09):
But, you know, she's amazing.
So I'd like to talk about more milestones, but I'll save that for other episodes
as we progress on forward here.
Again, I want to tell everybody out there to stay safe and hold on to your loved ones.
(40:31):
Music.
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