Saying No to Trach
Decision-making about a trach for my son: palliative care appreciates that it can be a loving decision not to do everything.
The mother of a medically complex 14-year-old speaks to how the medical system can make caregivers feel as though the only correct answer is to say ‘yes’ to an intervention when in reality, saying ‘no’ might be what is best for that child and family. She shares that hearing the story of another family who looked like her and made the decision not to trach their child, meant so much to her when she was making the same decision for her son.
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Decision-making about a trach for my son: palliative care appreciates that it can be a loving decision not to do everything.
Considering a trach: Wanting to do everything but it would have been too much for him.
Decision-Making: the gift of time to figure out what your child needs and what you can handle. (CPAP vs Trach)
Shared Decision-Making: Parent and Provider (Trach)
Decision-making re Trach: CPAP and doing everything possible not to get a trach for our daughter.
A mom on every night with the CPAP (not Trach): parents learn what they can tolerate.
I just couldn’t see our son with the tubes. It was just the way it was.