No disrespect, Bruce, but when I read "that [timing of BiPAP and/or feeding tube] will be up to the doctors managing his care," I feel we are being somewhat Pollyanna-ish. In practice, it is symptoms like feeling winded, headaches, increase in fatigue, etc. that don't always correlate with FVC or even MIP/MEP that should drive BiPAP, and it is on the P/CALS to be proactive in reporting symptoms and querying options.
Likewise, many PALS are told to get a tube well before they need one [e.g. my husband ate nearly 2y after being advised to get one] or that they can't have one later on, with respiratory impairment, when case literature suggests they can. We also see risky PEG surgery done because the center is inexperienced with RIGs or the clinic prefers to refer to gastros.
As we have also seen here, the ability to generalize these protocols is sparse because the natural history has evolved over time, and thus timing should really relate to the individual in a way that the clinic is not always able/inclined to operationalize.
Best,
Laurie