If you are like us and your child’s doctors are favorites on your phone, your online my chart is a constant open tab on your computer, and the pharmacies know you by name, this post is for you!
With the complexity of Everly’s syndrome, we are consistently adding new information to her growing list of medical history. From the very beginning, this information quickly exceeded my brain power, making it very overwhelming to review each time we were visiting a specialist. To complicate matters even more was in the emergency room, where the attending had never seen or heard of anyone like Everly before. In one scenario, we found ourselves in this very place twice in two weeks. Each of these visits eventually ended with an ambulance/flight to a larger hospital, followed by a surgery. However, there was many, many hours of waiting and testing before we got to this point. An ER visit for us meant spending the first three to four hours waiting, answering questions, and completing tests, with very little movement in the direction of home or an admittance. By this point, usually in the middle of the night, we were all exhausted, scared, and trying hard to be patient. It certainly was of no fault to any medical staff or facility. Everly’s medical care just is that complex. For example:
Currently, Everly sees specialists from four different hospitals:
- Grand Forks, ND
- Fargo, ND
- Sioux Falls, SD
- Omaha, NE
Has over 14 medical professionals in her collection of specialists:
- Pediatrician
- Gastroenterology
- Nephrologist
- Pediatric Surgery
- Nurse Practitioner to the Pediatric Surgeon
- Urology
- Wound Care Specialist
- Otolaryngology
- Registered Dietician
- Hematology
- Clinical Research
- Transplant Evaluation Team
- Two Wonderful Teams of Nurses
Takes 10-15 medications daily, from five different pharmacies:
And requires over 100 supplies daily from three different medical supply stores:
So the fact that we were already hours into an ER visit was very familiar to us. Usually, the doctor would come in with a stack of papers, asking us to explain in our own terms more about Everly’s rare syndrome. They would usually mention they had never heard of it, before leaving to try and figure out where to go next with this mystery patient they had sitting in their room. I remember thinking during one specific visit, that there had to be a more streamlined way to do this, something we could do to make it easier for everyone involved! That is where the idea of a “Medical Resume” came into play. The next week, I sat down and documented every piece of consistent information we are asked at both our scheduled and non scheduled visits. Things such as insurance documentation, medication lists, speciality names, medical history, etc… I also sat down with our pediatrician and created a care plan for when Everly is admitted into the Emergency Room. That way, the doctor knows right away the steps to take to ensure that Everly is being treated in the consistent and effective manner for her syndrome. Our pediatrician also documented what we as parents are comfortable doing ourselves and expectations for safe practice with Everly.
This medical resume is now a working document on my computer, so any time a new piece of information is added to Everly’s medical history, I go to this document and update it. I have provided a copy of this resume to all of Everly’s medical professionals, to her school, and keep copies in our emergency bag and cars. If you are like me, and all the medical information can seem somewhat daunting, I promise you that some form of the attached document will save you time and energy. We have found that medical professionals appreciate having it all in one place as well… a win/win for everyone! So in an attempt to save you the time in creating your own, I would love to share mine with you. I hope it is able to make your life a little easier too! Happy documenting:)
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