You will be expected to keep all medical records for your son in an orderly fashion. Large ring binders will be provided to you for this purpose. You must provide your own 3-ring binder hole punch. Knowledge of spreadsheet software will come in handy to track all of your son’s medical provider and specialists’ contact numbers.
Please note: leaving loose piles of physician and therapist, medical, dental, and speciality medical clinic cards around the house, in your wallet, and scattered about the bottom of your purse does not count as being organized.
You will be expected to quickly learn ear, mouth, and genetics-related medical terminology, as well as learning how to interpret an audiology report and graph. From ABR to PRN from frenulum to cochlea. Begin your study now. The internet will come in handy for research purposes but sometimes it is just best to order a book on the matter. You may require a new bookshelf or two to house your new research library.
Please note: doctors and specialists are extremely busy and do not have the time to explain your son’s medical conditions to you.
Most importantly, know that your various medical experts and specialists are not required to communicate with one another. Even your pediatrician will not function as the primary coordinator of your son’s care. Again, doctors are much too busy for such matters and cannot be expected to participate in the coordination of your son’s medical care. For this reason, your role as Patient Care Coordinator is extremely important. Although yearly performance reviews have not yet been implemented, you will find yourself executing your own performance review prior to all of your son’s surgeries.
Prior to any required surgery, YOU will be expected to call all of the specialists and doctors that your son has seen or is currently seeing, including his hematologist to make sure that the surgeons take the care required with regard to your son’s clotting issues.
Please note: it is not your pediatrician’s job or the attending surgeons job to call the hematologist, but rather it is your job to make sure that no unexpected bleeding complications crop up in the OR.
Finally, you must call all other doctors and speciality clinics to determine whether they have work that they’d want to perform on your son while he is under general anesthesia. For this reason, you will be grateful if you have taken the time to create a spreadsheet with all of their contact information.
Wait! No one sent me this job description two years ago. Spreadsheet? I didn’t think about doing a spreadsheet. And I cannot even find the card or report from our hematologist from two years back.
Performance Review: I have failed to meet the basic expectations required of this position.
But wait! How did I get this job? I DON’T EVEN REMEMBER APPLYING!
Even so, surgery is now scheduled for one week from today. May 3rd. In the morning. I’d better get busy making those phone calls and filing away loose doctor’s reports in Josh’s ring binder (oh dear, I think it’s been a year since I’ve done this last; I need to go through every cupboard and drawer to make sure I haven’t stashed a medical report away for “later” filing).
How do you know you are a parent of a special needs kid? You have no less than twenty cards from medical clinics, doctors, specialists and therapists that you haul around in your purse, that’s how.