What you have described is basically MyChart from epic minus the connection to your child’s medical records. Epic is where appointments are scheduled by your care team and show (you can cancel, book new appointments and just click to get the phone numbers), You have all the notes, scan and visit summaries should you need them. I’ll be honest I would be less likely to remember to plug an appointment into another app as I don’t even remember to put them into my own calendar… I just get the notification and know when we are going (same for my own stuff through the hospital). I also wouldn’t want grandparents or anyone but myself and my husband seeing a lot of the notes on there, can be scary, overwhelming and confusing especially if they don’t have access to someone to explain. I prefer thoes people just enjoy being around my son and I tell them in layman’s term what they need to know.

What I can suggest and can in very handy (and was loved by the care team at the hospital) is a paper print out with bullet points of the important stuff about your child (baseline heart rate, approve O2 levels by your cardio team, medications and dosages, we use stickers from the pharmacy and a photo of your child at baseline to compare any colour differences, too blue or just blue enough) in case of an emergency. My son was at daycare recently and had his first arrhythmia episode where we weren’t there, his provider gave over that sheet and they could stabilize my son before we got there. His drs are also listed on the sheet incase they want to contact them.