Job Description: Patient Care Coordinator (or, How You Know When You are a Parent of a Special Needs Child)

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.  

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4 comments
  1. Boy, does that ring true! I’ll be thinking of you on May 3rd – I can’t remember what surgery he is having (my brain fails me on a rather regular basis), but I’m sending him “recover fast” thoughts and, of course, thoughts of strength for you.

  2. Nicole said:

    You are Wonder Woman….or when you are at a point to look back…you will realize you were Wonder Woman!!! Add to that list, research all applicable guidelines for surgery and which meds may be used for anesthesia….You should have seen the look on Trey’s anesthesiologist yesterday when I asked him (grilled him according to Jim) which meds he would be using, how many staff members would be in attendance at all times (American Association of Pediatric Dentistry Use of Anesthesia Guidelines prescribes 3), and whether they were prepared with a Crash Cart, suction equipment, etc (again AAPD use of anesthesia guidelines are to follow “SOAPME” equipment protocol…equipment for Suction, Oxygen, Airway, Pharmacy, oh hell, I can’t remember M or E anymore!!!)……yes doc, some of us do more than just say “okay, whatever you think”.

    and incidentally……..AAPD and Jim do not agree on what SOAPME stand for!!!!

    • Hydie said:

      The sad thing is that I cannot get myself to research anesthesia right now. I am just so terrified by so many things for Josh, I cannot bring myself to the place of finding something more to stress about. Josh will be at the U of M Children’s Hospital and I know they’ll have a specialized pediatric anesthesiologist present the entire time, like they did for his last two sedations. My biggest stress now is thinking about the moment they take Josh from us and he is carried away by a stranger. He wasn’t as aware of this moment before, when he was 5.5 months old or 9 months old.

      Josh’s ENT may actually come into the OR and repair Josh’s eardrum, which will involve taking cartilage from behind Josh’s ear. He may even clip Josh’s upper frenulum, which needs to be done at some point. So it is looking more and more like Josh might be in surgery for a good long part of the day. I am just trying to breathe now.

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