My wife has the sharp mind of an engineer, but she was humble about reading the literature slowly and deliberately. She knows she’s not a doctor. However she was firm in asking the doctors questions about what she read, getting clarifications and not being satisfied with answers like “this is how it’s done” and would keep asking until things were explained. The doctors thought she was just obstinate against any procedure which was frustrating. She used the doctors as a resource, then made the most informed decision she felt she could. We got second opinions from experts at other children’s hospitals.
I feel sort of sick remembering one meeting where they told us our daughter would get 24 hour nursing care covered by insurance if we got her a tracheotomy, what a weird carrot to dangle in front of a parent. I think they thought what they were suggesting was the best medical choice but a baby with a trach needs 24-hour care because it can’t even cry when the tube is in its throat.
I feel sort of sick remembering one meeting where they told us our daughter would get 24 hour nursing care covered by insurance if we got her a tracheotomy, what a weird carrot to dangle in front of a parent. I think they thought what they were suggesting was the best medical choice but a baby with a trach needs 24-hour care because it can’t even cry when the tube is in its throat.