Working with the Medical Team

My Present-Self message to my Past-Self: “You are doing a good job. You can take a rest.”
Sandy, mother of Jack and Ben. Jack was diagnosed with the rare blood disease Kohlmeier-Degos and died 15 years ago at the age of 5 – only 9 months after his diagnosis, most of which was spent in the ICU. The experience was traumatic.
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My Present-Self message to my Past-Self: “You are doing a good job. You can take a rest.”

In the Zoom Room Recording: What does a good day look like?

Uncertainty: The doctor can’t have all the answers; building a shared partnership.

Cardiomyopathy: A mom on building a trusting relationship with her son’s heart failure doctor

Cardiomyopathy: Learning the second pregnancy is also affected

Two brothers with cardiomyopathy-- one dies unexpectedly at home; keeping 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.

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.

A cardiac heart failure MD: Having goals of care talks at non-crisis times

Our primary care pediatrician was our biggest support.

You can change your mind re treatment and care plan.

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.

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.
