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I am technically a stay-at-home mom, but I prefer to think of myself as my son's personal health care manager. It's a job I didn't apply for, but if I had, I imagine the job post would have looked something like this:
Job Title: Personal Health Care Manager
Job Description: The Personal Health Care Manager will perform all administrative tasks pertaining to the health care of a 5-year-old boy with spastic quadriplegic cerebral palsy and take him to all medical appointments.
Regular Work Hours: Almost all the time
On-Call Hours: All the time
Sick Days: Not guaranteed
Salary: $0 (non-negotiable)
Background of Successful Applicant: There is no way to prepare for this position. If hired, just dive right in. ;-)
- Fill out forms—medical history forms, developmental history forms, sensory questionnaires, etc. You will quickly become an expert form-filler-outer.
- Take kid to all doctor appointments. After each appointment, make more appointments.
- Hand over credit card to: doctors' receptionists, therapists' receptionists, pharmacy staff, etc.
- HOWEVER, if anyone says the payment they're asking for will go towards your deductible, smile and say, "We've already met the deductible." (Feel free to throw in a cheeky "One ambulance ride will do that for ya!")
- Learn the following vocabulary words: ophthalmology, orthotics, pulmonology, gastroenterology, and speech and language pathology.
- Learn the differences between a neurologist, a neuropsychologist, and a neurosurgeon. Figure out which questions to ask which one.
- Make phone calls to: schedule appointments, reschedule appointments, cancel appointments, request referrals from kid's pediatrician for appointments with specialists, notify kid's school of absences for appointments, and complain to your mom about appointments.
- Also make phone calls to: get lab results, argue with the health insurance company, find a pharmacy that has kid's recently prescribed (and difficult-to-find) med in stock, and update your mom on (and/or complain about) all of the above.
- Answer phone calls from: doctors ("The lab results are in..."), doctors' receptionists ("Oops, the doctor will be out of town during your scheduled appointment, so we need to reschedule"), complex care coordinators ("I recommend taking him to the following specialists: ______, ______, ______, and ______"), and your mom (she deserves it).
- Learn the meaning of the following acronyms: MRI, EEG, CP, EKG, V/P, IVH, IEP, OT, PT, and WT_ (J/K).
- File: (paid) medical bills, doctor visit summaries, therapy reports, and anything else containing a word ending in "-ology." (Except "biology." Or "theology." Okay, don't file everything that ends in "-ology." The point is, you will need to file lots of stuff.)
- Take kid to get x-rays. Be prepared to hold down his arms and/or legs while wearing a giant radiation-proof vest with 101 Dalmations on it.
- Take kid to get MRI images. For best results, calm kid down in any way possible. Tried-and-true method: lie on top of kid, enter MRI machine with him, and sing "Wheels on the Bus." Good pitch not necessary; you'll both be wearing ear plugs anyway.
- Update family's Google calendar. If any week has no appointments scheduled, check for errors. If there are no errors, schedule a family vacation.
- This list is not comprehensive. Additional duties include (but are not limited to): taking care of kid, coordinating kid's care with school staff and outside therapists, and managing medical emergencies. If/when feeling overwhelmed by duties, seek encouragement from kid. He will gladly, on demand, clap his hands or say "Go!"
- Increased empathy and compassion, and best of all...