Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:03):
So welcome to episode four so this episode
i feel is only right if we have to preface
it with a warning because maurice let me let's listen to it beforehand and i'm
telling you i don't know it's because i know them but i would say this is on
the more graphic side so proceed with caution There is some situations and even
(00:26):
some accusations that may be a little,
I don't know if the word is triggering, but upsetting.
Just Maurice explaining the situation. So let's see what Maurice has to say.
Cindy was what appeared to be very motivated.
I knew she was always a fighter even before this. But here, she was compelling.
(00:49):
It felt like she was compelled to fight because she solutioned out a way to
communicate with us when there was no other way.
I mean, granted, using the sign language is not as easy as talking,
but it was certainly better than using the board.
And just sheer will, motivation for herself, Hudson, for me, just her life itself.
(01:15):
It's amazing that as she laid there, she was solving a problem that we were all trying to solve.
And that's astounding. And that's what I mean when she inspires me.
She's amazing in that way. and I just can't stress that enough.
(01:40):
And these were milestones. The doors were open for many things at this point of time.
It was a pivotal point. It was a momentous occasion because now that we had
a better dialogue, we can ask her what she's going through, what she wanted.
(02:01):
We could ask her, Or she can ask us or tell us what she needed.
And some of the dialogues we had was hard sometimes.
It's funny other times. I know that...
The point where I knew she understood what I was saying, I struggled with the
(02:24):
fact if I should ask her how she felt or what she wanted from this point on.
Did she want to continue to move forward and fight, or did she just want to have peace?
And I struggled a lot with whether I should present her with that question.
(02:47):
And at the end I thought it was unfair I mean she was in a situation and we
had moved past a certain point where we couldn't look back and in my heart I
knew that she was a fighter and she was going to get better,
but those are poignant moments,
in my journey where,
it caused me to pause and really hone in on what I wanted to do how I wanted
(03:15):
to proceed with her care.
But it was, again, at this point, she was signing with us.
She could nod and shake her head a little bit.
And the current state apart from that was that she was fairly thin, frail.
(03:37):
She was on an NG tube and obviously she was unconscious in a coma for a week
or more. So she had lost a lot of weight.
I mean, she was probably, you know, 80s, in the 80s pound range,
more or less. Certainly not healthy.
(03:58):
So there came a point where I had to make a decision for a feeding tube or a peg tube.
That day came and she was rolled into the interventional radiology clinic. Okay.
The procedure, as explained to me, was that she was going to be awake,
given sedatives, did not have any pain and whatnot.
(04:22):
However, her experience was far from that.
Now remember that she couldn't talk, and nobody apart from really me or her
sister knew sign language. We get to the clinic.
Doctor explains the procedure and assures us everything's going to be okay.
I gave Cindy my love and assured her she'll be fine.
(04:46):
Vacated to the waiting room. Again, any procedures, surgery,
it was always nerve-wracking for me, especially for somebody like Cindy.
It was the longest one and a half to maybe two hours I ever waited.
This procedure is supposed to be simple.
So, I mean, there was a little bit of relief there. It certainly doesn't compare
(05:09):
to the emergent operation that saved her life.
So I'm sitting there occupying my time by making phone calls,
doing errands, handling business outside of Sydney Care, you know,
with insurance companies, benefits, etc, etc, etc.
And then the doctor walks out. He's got his mask dangling from his ear,
(05:32):
you know, exposing his face. and he had this distressed look on his face.
Wow, I had tunnel vision.
You could drop a hair and I would hear it. I watched as he approached and said
something to the tune of, quote unquote, we couldn't perform the procedure.
(05:56):
Gasp. She was fighting us, scratching us, resisting us. Damn.
My Cindy, what is going on? Eventually she surfaced and she was distraught.
She was frantically signing to me.
And after some time I was, you know, I was successfully able to decode it.
(06:19):
She said they were hurting her. She said she was in pain and they tried to strap her down.
Gosh, that broke my heart. I failed to protect her.
If I could be in the room I would if I could
be her shadow wherever she went I would there's just
some places I can't go and it just
(06:40):
felt like she was abused and now I don't want to get too far ahead but she was
I don't believe she was abused or anything so it turns out that because she
couldn't communicate she couldn't actively tell them other than sign language
or her erratic behavior,
how she was feeling, it.
(07:05):
Didn't help and therefore they didn't know what was going on other than maybe she was having a.
An adverse side effect to the sedatives
but in talking to cindy through
the means of sign language you know i remember her
being on the gurney and they wrote her out and she just reached for me held
(07:27):
my hand and was frankly you know trying to tell me something you know so So
I pieced it together and I believe what happened was the procedure,
because she was awake, given sedatives,
not under general anesthesia, not asleep at all or anything like that,
(07:50):
the sedatives did not numb the pain.
And so what they do is they usually, for this procedure to insert a feeding tube,
they would put a balloon down in your stomach region and expand it and then
perform second part procedure, which is kind of inserting the feeding tube.
(08:12):
But in that portion of the procedure where her stomach was filled up with,
I think it was air or trying to expand it so to have room and space to perform the operation,
that caused a dramatic pain for her.
And that was when she said that she felt pain, but obviously she was on a trach
(08:35):
and she couldn't talk and she was struggling and she was.
I believe there was probably the head doctor and then maybe an assistant and
she was just trying to shove the hand out of the way and they struggled and
they were holding her back, but she was in pain and they couldn't recognize that.
They, you know, it's only because after the fact, I was talking to her and I
(09:01):
could decode what she was trying to say that that was her experience.
There are many moments like this that drives me crazy.
Having her going through one traumatic event to another traumatic event, it's just not fair.
How much more can I take?
(09:24):
How do I prevent this? It's heartbreaking to see my Cindy suffer like that and
continue to be traumatized.
From the insult to the day of the insult to the NG tube incident and to now this feeding tube.
(09:48):
Anyways, that being said, our next course of action was to schedule...
We didn't have a choice. She needed a feeding tube because she couldn't eat
orally and the tube that was placed in her nose can only sustain her for so
(10:09):
long and it was not a long-standing solution.
The fiend tube was to give her the nutrients that she needed,
the sustenance that she needed.
So the next step was to schedule her to go under general anesthesia and hopefully
then she could have a better outcome.
(10:34):
Luckily, that worked out fine. And so she started to gain some weight.
There were times where she would just expel the food or vomit,
which is difficult when you have a trach and you're having coughing fits and
you already kind of have a complicated situation in your throat region.
(10:58):
But she was starting to gain some weight, and I guess that's a positive note, right?
Apart from that, during this period of time, we started to do trials of rehab.
Where she was at this current moment is not really a rehabilitation center.
(11:19):
Is just sort of a post-emergent acute care facility,
really to kind of transition you to rehab to get you more medically stable,
to get you stronger, to be able to do some sort of intense therapy.
In these sessions, I'm going to be talking about.
(11:41):
A dichotomy of hope and hopelessness.
I'm not sure how to really express that.
But on one hand, you saw a high-functioning individual before who was a mother,
a wife, a contributing member to society,
who managed other people as well, to a person who had to ask for every need.
(12:11):
And in the therapy sessions, some exercises that they would try to do is speed
tests or minor functional tests like moving a cup, raising a cup, raising your hand.
And it was a struggle. I just never could imagine that we'd be here today.
(12:33):
And I couldn't imagine that I was, you know, I'm going to see my wife learning to move again.
So my son was eight, nine months around this time.
And he's kind of learning how to walk. He's learning how to talk.
(12:55):
He's progressively eating.
So he's hitting his milestones. And just to live in that same moment where my
wife has regressed to this point trying to learn at the same time as my son
was learning was ironic.
Now, I knew that my son will eventually grow and progress, but for Cindy,
(13:17):
I'm not sure because we don't know.
I don't think anybody can tell you what the outcome will be.
Line during the moment that she got the injury till now, we were starting to
witness an opening of progression and that was hopeful.
(13:40):
One of the progressions and milestones I would also say is that when she was
on the trach hooked up to a ventilator,
we would do trials to help her breathe on her own, you know,
providing resistance or taking away some support a little bit.
(14:00):
And each passing day and week, you know, we have our ebbs and flows and there'd
be time where she did well and there'd be times that she didn't.
But as the trials got more frequent, she became more and more independent of the machine.
(14:21):
And I remember one trial they when they were doing it it's like oh she's breathing all on her own,
and it lasted for like two hours then three hours then they stop and try again
the next day and it be consistent and then eventually she was free from the
(14:42):
machine my gosh what a blessing She could breathe on her own She's gonna make it.
Part of this process comes with
hope and frustrations you know
you there's in this
conversation this episode i just highlighted the fact that she's signing she's
(15:06):
breathing her own but at the same time you know challenges of of procedures
or or her frustrations or agitations So as she's signing,
sometimes that's an opening to get more frustrated because now if you can't
(15:27):
communicate with her, you're not understanding her language, she gets frustrated.
She gets stressed out. She spends a lot of energy because she's trying to repeat
over and over maybe one thing that she said versus before when she couldn't
sign, she was just receiving information.
And now she's trying to give it and you're not reciprocating
(15:50):
reflecting or showing signs of understanding what
she's saying it can be hard for her because you're
trapped in your body just i just empathize
i can't imagine laying there and then telling somebody you know can you please
adjust my hand and that person keeps misinterpreting that and here you're saying
(16:14):
it 10 times and and you want to give up, but you can't because it bothers you so much.
And then you feel trapped because there's no way.
How do I solve this? I can't move my arm or anything like that.
And that's just a small example of many examples like that.
Some of the challenges that comes with brain injury is sometimes you don't know
(16:41):
how her brain is responding. How is it processing things?
Sometimes it felt like it just checked out and there was a lapse of self-awareness.
What I mean by that was like there are instances where she felt agitated.
She would try to pull her catheter out, her oxygen monitor, her IV.
(17:02):
I remember one night her sister took the graveyard monitor shift at the hospital.
It was dead of the night. She was sleeping on the recliner.
I take that back. More like she's resting. because hardly any of us could sleep there,
especially when Cindy would often have coughing fits and choke on her mucus
and her saliva that required us to line her head back on the pillow, suction her pipe,
(17:26):
wipe her tears and mouth of liquids,
kind of redress her a little bit, get her comfortable so that she'd have a good night rest again.
This was routine for weeks, just rinse and repeat. On this night, she was very agitated.
It just seemed like parts of her checked out and she was just attempting to
(17:53):
yank out all of her lines.
We had to constantly refrain her from doing it and trying to explain to her
was hard because we just looked her in the eyes.
She was speechless, unable to talk, pleading with us to free her of this torture.
And I was sitting there, her sister was sitting there, we were just explaining
to her, it's like, hey, you need this. This is for your survival.
We need to monitor this. This is here to sustain you. and she wouldn't process that.
(18:17):
She'd just shake her head and try to rip out stuff and it was hard. It was emotional.
It's just, what do you do?
You can't give her what she wants and you can't make it go away.
Just the anguish of keeping her alive and comfortable was challenging,
harrowing, to say the least.
(18:39):
However, in the middle of the night, it only took a moment for us to look away
or to doze and she was successfully able to pull her trick out one night.
I mean, gone. There was a gaping hole in her throat.
It was a scene from a horror movie.
I mean, I don't deal with this, right? And gosh, there was a sister.
(19:03):
She told me she was ahead of texting me and she had to alert the whole entire
staff or get somebody bedside to immediately reinsert the pipe or do whatever protocol provided.
The head nurse had a strict conversation with her trying to determine what she was trying to do.
(19:23):
But again, she can't talk. There's just so much frustration,
so many difficult things to really understand what's going on.
And then they were attempting to strap her down and she pleaded and eventually
complied that she wouldn't do it again. and they were like, okay,
they were going to put mittens on her or something like that so she couldn't touch anything.
(19:45):
And my God, this was just all onerous.
My dear Cindy. We had many nights like that. It's come and go.
You know, you're just trying to get her to the next day and hopefully the next
day is better than the day before.
Hopefully, she can continue to progressively get better in all aspects,
(20:11):
from brain activity to self-awareness to being comfortable.
It took a long time, but back to the rehab sessions we were,
those were the moments that I would look forward to.
I would often ask them to come a certain time so I could be sure that was in
the room. and a watcher, do trials with breathing, do trials with...
(20:40):
During visual tests. As the days at the LTAC progressively got longer,
we hit a point where it was becoming more imperative that she transition to
a rehab facility, a true rehab facility.
(21:01):
But to do so, she had to qualify in some way,
meaning that she had to be able to tolerate intensive therapy or some sizable
amount of therapy to be accepted into certain programs.
So that's what we're working on. We're working on endurance.
(21:23):
But her signing, her communicating was great because we were able to talk about
a number of different things.
I said before, some of it was funny, some of it was emotional.
I know one of our friends came by to visit, and this is the type of person she is.
(21:43):
I obviously had to serve as the translator because she couldn't talk,
and so I was decoding or transcribing her sign language for them.
But she could hear. If I didn't mention that, she could hear.
So I didn't have to sign back to her I just had to read what she was trying
(22:05):
to tell us but I could speak to her.
So my friends, our friends were there,
and she didn't really talk about herself,
she was signing things her conversation was how are you how are things where
you're at by the way I have something at the house for you you.
(22:27):
I know you like lavender.
Have Maurice go get it. It's in the cabinet, you know, here and here.
I mean, it didn't go out, it didn't come out fluid like that,
but that's, in essence, what she was trying to say.
And I transcribed it for them. And I, in one hand, I was like,
wow, even now you're teaching me about compassion and how to, I mean.
(22:51):
I'm just learning so much from her. If it was me, I'd be like,
yeah, I'm feeling crappy.
Can you just go get me something to eat?
But no, she was just asking and trying to make them feel comfortable. Imagine that.
Of course, there was other conversations where she would sign out a very complicated word.
(23:16):
I mean, SAT word even. In one instance,
and I had to do like a double and triple take when I finally transcribed what
she was saying, she was telling me something about somebody, she didn't feel safe,
and then the word came out, sodomize.
(23:37):
Oh my gosh what what what
what are you talking about sodomize but that's
that's the way she processed things sometimes because
maybe you're not self-aware of your situation but i think when she was on the
catheter and they always had to remove the catheter sometimes or had to wipe
(23:58):
her down or turn her they were very sometimes physical with her something you
know because and she interpreted it that way.
But for her to spell out, I mean, there's so many other words you can use,
but I guess she was tuned in, dialed in where she can just say words that really
describe how she was feeling.
(24:19):
And I was shocked and amazed at the very same time. It was just, wow.
Needless to say that she wasn't sodomized.
I think she interpreted it that way because when you have somebody constantly
fidgeting and you have no fidgeting with your your body and you have no privacy
(24:40):
and and you've kind of lost all that that,
number on you and let me say that through
this whole process every step
of the way i did my best to maintain integrity
for her like what what would she
do well how do i you know we need to treat her as a person not as a thing we
(25:06):
need to talk about you know we need just don't we don't just talk about her
we talk to her you know if she needs privacy you know have you know maybe she
would I thought to myself,
maybe she would want female assistance for things versus anybody else.
So I was mindful of those things because I wanted her to know that she still
(25:30):
was somebody that had the needs of a regular person.
I wanted her to feel empowered whatever she wanted she could do within reason.
And it was not just sit there and be a puppet.
But yeah, this period just made me feel more appreciative of her.
(25:57):
There's so much more in our journey.
When people realized that her profile read that she was an oncology pharmacist,
they were amazed. amazed.
They were soon asking her about the medication they were administering to her,
like, is this what you want? Is this the right dose?
(26:18):
And at a certain point, she was giving feedback, like, you know,
for pain, I want to take this and that.
Oh, I need to take it, you know, 30 minutes before I actually feel the pain.
But she was just, it was nice to see her practice practice what she had done as a career.
(26:41):
She was managing her medication.
It's all good signs. Before we leave this facility into rehab,
one of the things we really worked hard on was decannulation.
Music.