Working with the Medical Team
A mom on decision-making: You do have to anticipate what may lie ahead and then trust yourself. Don’t give your power away.
In her Zoom call with CPN, Mona, mother of an 8-year old boy who has juvenile Tay-Sachs, shares her approach to decision-making: it’s hard to do because you’re trying to make a decision about things that haven’t happened yet. Trust yourself. It’s your job. Don’t give your power away.
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A mom on decision-making: You do have to anticipate what may lie ahead and then trust yourself. Don’t give your power away.
Bridging the Gap to the medical staff. It was like being in communion with each other.
A mom to medical providers: “For you, you do it all day long. For us, our world just got turned upside down.”
palliative care nurse vs block nursing, in the home
A nurse: I metaphorically lie down on the floor with them.
The community-based nurse: A communication bridge between home and hospital
Shared Decision-Making: Parent and Provider (Trach)
Parenting a Medically Complex Child: Becoming my son's advocate
Our pediatrician was the key that held everything together for us.
Our Pediatrician provided stability.
Our primary care pediatrician was our biggest support.
I relied mostly on the early intervention people to help focus on the living.
It seems to be a terrible waste if the primary care doctors are not part of the process.
I Want Straightforward Answers
When it’s not a good fit.
I need his life to be good NOW.
It becomes about a good fit.
We said, “We want to be part of the Solution.”
Her pediatrician is out of this world!
The Pediatrician and Shared Decision Making: It was a true collaboration.
The Medical Team: You want a sense of being heard.
We have a wonderful staff of nurses.
Our pediatrician has been nudging us: “Are you sure you want to do these things?” Comfort Care.
Doctors should know that getting past the fear of it is the biggest step.
It was very difficult to disagree with the doctors because we’re not doctors.
It has taken the specialists 11 years to get through to me.
Now they say, “Whatever you say, Mom.”
What gets to me is all the medical appointments.
As a parent, you know instinctively in your gut that something’s not right.
I want parents to know to be empowered.
