As a transitional care manager,
I help bring medically-complex children home from the hospital
into a safe environment.
It's often a lengthy process, but much of the work and preparation
goes on behind the scenes, long before
the baby is discharged.
Working closely with the family
and hospital, I help ensure
that the transition to home is as smooth and safe as possible.
Seeing a family's joy as their child
comes home is a feeling beyond words.
But that's only the beginning of the home care journey.
As you'll see in a moment,
keeping these children safe at home
is an ongoing challenge.
Especially with a nationwide nursing shortage.
However, together—with the parents and providers—
we are able to make what was
once impossible, possible.
Life isn't easy for these families,
even with home care.
But having a nurse in the home
makes living together as a family possible,
and that's the greatest joy of all.
The diaphragm doesn't form properly
in utero, so Adeline had a big hole in her
diaphragm which allowed all of her internal organs
to migrate up into her chest cavity.
Before Adeline was born,
CHOP gave us about a 60 percent
chance that she would survive.
I didn't want to go out in public because
I didn't want even a stranger to look at me and say,
"Oh, congratulations! I bet you can't wait."
or anything positive because nobody could really
understand that that joy was kind of taken from you.
Neither of our insurance policies
or neither of our employers even offer a policy
that covers any home private duty nursing.
It's just not even an option to us.
I don't even know what would happen.
Adeline would be in a hospital somewhere, unable to come home.
It would just—it would be horrible.
She—I just don't even—
I can't even imagine a world of her not having
it because I just can't imagine my child
being forced to spend her life in a hospital
when she could thrive at home.
When I first got the referral and I got to read all
that was involved with Cole,
I have to say we were nervous.
He was one of the most complex babies that we took home.
So, the first thing that we like
to do is a little bit of research.
So the pump that he went home on—
the Remodulin—was something that set him
apart from other babies that we normally take home.
We reviewed his case,
and we had to hand-pick very special
nurses just for Cole.
And then we had to make sure that they
learned about the Remodulin pump as well.
So, we did all of that behind the scenes
before I met you.
But, after meeting you and seeing how you
were spot on with his care, you asked great questions.
You were already taking part of his care which is a huge step.
I felt a lot easier like,
"Okay, we can do this one."
because it really is a partnership.
It's a lot to take on and think about,
and I'm just glad that you guys were willing
to take him on and us on
because nobody else really was willing.
And they said, "Okay."
and then they found out about the Remodulin,
his heart medication, and they said,
"Oh no, we don't do that here. We can't do that."
It's a long process.
It's not something you can do overnight.
There's weeks and months of planning.
I know that you wanted him home for Thanksgiving.
And that was a big push.
Bringing someone home around the holidays
can be challenging, but we had his little face.
We want to get him home for Thanksgiving,
the little turkey. And we did.
I think between the discharge nurses and the PCU staff
and the way they prepared us and
then also working with you and all the questions
we had and everything, we really were able to
get an idea of what to expect that day.
It was nice that we were able to meet
the nurses ahead of time.
We were able to meet the medical
DME company ahead of time.
Did they set the home up together?
They did. They helped set up most of the medical equipment.
So, and like, gave us a rundown of how the morning
or that day would look for us and who
would be here and everything.
It was just like an out-of-body experience.
I know I was sitting there,
but I felt like I was looking at it from up
here and watching like they actually showed up on time.
And there was like this big stretcher,
and he was this big.
And it's like oh my gosh!
We're really going home.
I really can't imagine what life
would be without home care nursing.
I know even as it is if there's some
extenuating circumstance and a nurse has to call out,
it's really hard on my husband and I.
If that was an everyday thing,
and we never had home nursing,
I just, I don't think she could be safely at home right now.
We couldn't get her safely to any
appointments on our own.
She needs somebody to look at her all night long.
She has a lot of needs during the night.
I think sometimes even more so than during the day.
When we have a nurse that's not there at night,
you don't sleep.
Even when the day nurse shows up,
it doesn't mean that,
now you've been up for 24 hours straight,
but the day nurse shows up and you can't
necessarily go to bed.
She has appointments still that you have to drive her to.
So you could be up 36 hours.
It's just—I can't imagine that being an everyday thing.
It's already very difficult when it's just a
once-in-a-blue-moon circumstance.
If the nurses weren't here,
we would have to spend all of our time
just focused on her medical needs,
and we wouldn't have time to interact
with her and help her advance developmentally.
I can tell you right away that it would
never be possible for him to be as well as he is
today if I wasn't here as much as I was.
The extent of the emails, the phone calls,
the doctor's appointments,
you are now not only taking care of yourself
and the rest of your family but also
a kid that you have to advocate for, for everything.
You have to make sure that the medical equipment's
coming, the supplies are coming,
the right things are ordered.
It's a full-time job
on top of a full-time job
on top of a full-time job.
A long time coming but— and I guess that's some
of the stuff we thought we would miss out on
with him being in the hospital.
We just thought that all these milestones
and all these things that babies get to do
and experience we would miss out on.
So it was really nice to have your baby home, still be a baby.