Virtual Home Visit for a Child With Medical Complexity: Provider-family Partnerships by
the Savage Family and the Virtual Home Visit Working Group.
I think understanding that these are not one-time visits-- these are lifetime relationships
that we're building-- I think that's one of the key takeaways that I have is just that--
is we're in it for the long haul, and we need them to be as well.
Trusting and listening to the parents, and really trying to hear them about the unique
nuances of the child and how they present things because we've definitely hit roadblocks
there-- and I think trusting more in our gut instincts, and, obviously, we're not the experts,
but I know we know when something's wrong, like it's not the norm for this child-- for
our child-- because that is our job because we are on the front lines on a daily basis.
So I feel like, sometimes, there's a disconnect there-- so treating it as a partnership because
we want to succeed just as much as they want to succeed.
So I think it's the true partnership mentality, and then also knowing it's never that simple
on the other side because it's not just us.
There is so many other entities involved, whether it is a pharmacy, a fulfillment center--
as far as equipment is concerned-- whether it's a nursing service, whether it's school.
It's just not done once we leave because we have a job.
We're handling multiple parties.
And then, of course, then that crazy thing called insurance, right?
And they don't make it easy.
. I wish they did, but they don't.
And there's a ton of-- I guess the work and paperwork on our end to make things happen
because I think they forget we get a lineup resources, or we got to make a zillion phone
calls.
And it's like a second full-time job for us.
We work full time, so maybe-- it's someone's primary a full-time job.
But it takes a lot of work and a lot of coordination-- and anything they can do to help lighten the
load and just be really patient because it's pretty overwhelming.
It's a lot.
And you're scared.
I mean, we love this child.
And we just want him to feel his best, be his best.
I've had to change a couple of relationships for not being listened to.
But I'm not afraid to do that because we're in it for the long haul.
And it doesn't work if it's not a team.
And listening and seeing him as a complete package and listening to what we say-- because
I know, as a parent, our gut instincts are way better.
That's our job for a kid who can't talk.
Like, we play detective.
We watch him like a hawk.
And we look for the littlest changes.
And the good thing is, like, with a true partnership-- because sometimes, I'm truly stumped, or I'm
too much in the weeds-- so I have to say, OK, I don't get.
And he'll be, like, oh I think he's getting his molars.
And I'm like, oh, yeah.
With somebody like Jack, who has as complex a structured of issues, he's on so many different
medications.
And every one of these medications is helping one thing, but it's fighting with his body
for something else.
I think that's one thing to really echo is that-- because he can't say anything-- I think
that's the hardest part because most of time you know, and you can figure it out.
But like, even with the broken leg, there was no bruising.
There was nothing.
He had it been dropped, fallen, anything.
And so there was no outward sign to even think that he had a broken leg or any of these other
things that are going on.
Or like, I'm hungry-- he can't say, "I'm hungry."
I was thirsty-- or keep up with that so you know your gut instinct.
And you'll push through until you figure it out.
And then that's the other thing with a child like Jack.
They don't call it "complex" for no reason because, usually, when something's going on,
it's not one thing.
It's usually multilayered, or it turns into something else.
Like, hip surgery turned into a month because he got--
--a partial lung collapse.
Too much water in his leg.
His lung collapsed from too much fluid in his body.
And it was a Code Blue.
And then we were here.
So that's what the most important-- I think doctors learning to trust us in what we know,
but also, helping interpret the gray area-- obviously they can't communicate-- and then
understanding, usually, it's not just a simple answer.
Jack is our son.
And he may not sing in the choir.
He may not ride a bike.
But he giggles, he laughs, he makes us happy, he has his own personality.
Singing's good for the soul.
He's the best thing for the soul ever.
So we've had to peel back the layers of the onion at every turn, and come up with different
things that we've had to handle, but no different than what we've had to do with our other son,
who has experienced broken wrists, and bumps on the head, and stitches here and there.
And you do what you have to do.
And that's what you sign on for when you have a child.
We have a sign over the door in our house and in our bedroom.
And it says, "It is what it is."
At the end of the day, it is what it is.
I can't change it.
If I can't change it, how do I work with it-- because that's what we have to do.
And so Jack is the perfect example of, it is what it is.