Shifts in Baseline

We were so caught up in having a new baby, and having this new life at home with the two of them
The mother of two sons, the eldest of whom was diagnosed with Marfan Syndrome at birth, recounts what it was like when their second son was born and her older son’s baseline shifted within the same year.
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We were so caught up in having a new baby, and having this new life at home with the two of them

This is How We Live: This Thing Called Baseline

A Mom reflects on when quality of life bumped into quantity: We asked, “What are we doing?”

Intractable problems regulated by the CNS: Fix vs Modify. Asking to understand “I can’t make it better.”

The Conversation and Advance Care Planning: “As Baseline moved, we’d make a new plan”

Problems of the CNS: Is this a new acute problem OR a change in Baseline

Problems of the CNS: What are family’s expectations: ‘Fix’ vs Accepting a change in baseline.

Intractable problems and a new Baseline: When the hospital can’t change the outcome

I need his life to be good NOW.
