I typically function with organized piles on my desk, in my laundry room, on my dresser, etc. However, in the first half of 2007
Talli spent a lot of time in the hospital with various types of sepsis, septic arthritis, and port change outs that I decided to put the time sitting in her room every day to good use. I put together her "Care Notebook".
This has been a life saver, time saver, and very much worth the 15 or so pounds it weighs to take to each appointment and hospitalization. It helps to keep me focused at appointments, especially if I have all of my kids with me. I think it adds credibility to me as a parent because I can give specifics to a physician on her history, labs, and medications; when I can give them a list that they can copy for her chart.
A fellow board member at the
Propionic Acidemia Foundation put together the basic structure for the one I use, however, I add and take away as seems appropriate.
I recently took out all discharge paperwork out of the notebook. They just took up too much space and didn't really convey any information that I didn't have somewhere else. Also, the specifics of what medications were given at what time the day of discharge doesn't add anything to her overall health plans 6 months later. I tossed what I didn't need, the rest got filed.
It is a 3" D-ring notebook. I have two sets of write-on divider tabs (we need that many!). A
velcro pocket folder holds prescriptions given to us at appointments or small notes. A business card holder keeps the cards from her various specialists. I used to keep a small 3-ring hole punch in there, but I really needed the space, the same goes for a pencil/pen case. A CD holder keeps digital medical files, which are mainly x-rays and other radiological studies.
I have smaller versions of the Care Notebook for all of my kids and myself. My husband has excellent health and sees a doctor for an annual physical because I make him. Other than that, he usually has some sort of major accident every 7-10 years, but since he has no underlying conditions we don't need to tote any records to the hospital with us.
When we
goto appointments I carry
Talli's Care Notebook in a canvas bag. When she is going to the hospital it goes in our hospital bag, which I will write about at another time.
Sections of Care Notebook:
-
About Me Emergency Contact information; Emergency Information Form for Children with Special Needs; general information about likes, pets, foods, bedtime, etc. (think along the lines of someone stepping into your role and needing to know that your child will throw up ANY mixed texture food); Birth & Early Development; Diagnosis history, Medic Alert Record Summary, Medications (I use Post-it flags for each current med);
-
Labs & Tests I am phasing out this section. I put labs in chronological order by type, so all
CBCs were together, etc. However, for the most part it is a specific physician ordering a specific test, so I am now putting them in the sections for each specialty. The medical records prints labs for 2 different specialties on the same page, I copy it, so each lab can be in the proper section.
-Hospitalizations (This section is never up to date) It lists the dates of admission, name of hospital, address, doctor's names, reason, and outcome.
Talli has had over 100 hospitalizations if you count outpatient visits, which is why it is not up to date.
-Contacts Health Insurance information, including a copy of each card. I keep expired cards as well, as billing can sometimes be delayed more than 12 months. Hospitals we use; the business card holder with provider information AND device information. For each
implanted device she has had we have had an ID card with information regarding placement and model/serial #s.
-Supplies A descriptions of each supply ordered; company ordered through; reason needed; comments;
prescribing doctor; and contact person at insurance if prior approval is needed.
-
Nursing/Home Health Contact information for all companies; services performed; frequency; notes; and a phone log.
-
Specialist subsections This is the reason we need 2 sets of divider tabs. Genetics; Nutrition; Pediatrician; Cardiology/
Electrophysiology;
Gastroenterology; Hematology; Allergy/Immunology; Endocrine; Orthopedics;
ENT.
For each subsection I have the following: Contact information for the office & nurse; Phone log; Clinic Visit notes (these are my notes for each appointment); letters written by doctor to school, for ER visits, for travel, etc.; labs specific to that specialty.
-
Medical Assistance/Case Management Programs We have case management through a state program for her metabolic disorder, so I have contact info and a phone log for that. I also have a section for the Case Management at our Primary Insurance company.
-Infusion Log A record of all Intravenous Immune Globulin infusions that she has received.
-Glossary/Reference Information This is VERY useful. It lists medical terms specific to her metabolic disorder, how to calculate things like Anion Gap, which may not be calculated on a lab sheet, Blood pressure reference chart by age & height; growth charts (If she didn't have growth concerns because of other medical conditions, I would have this in my pediatrician section, but since GI, allergy,
endrocine, and genetics all care I keep it here).
-Forms extra forms for the Notebook, like phone logs and clinic visit sheets. I also keep school medication forms in case she is prescribed a medication that her nurse will have to give her at school.
I keep all of the Care Notebooks in a cabinet in my family room. The person who would take care of my kids in the short term if something ever happened to us knows where the Notebooks are kept.
I hope to post links to Care Notebooks and photos this next week.
at www.mygardian.com/gardian/living-with-pi/resources.html
The last thing is for parents. There are 2 Notebooks in the Wellness Kit with divider pocket folders and blank pages to keep track of medical information, bills, etc. You could also customize for your metabolic child with the Care Notebook that the Propionic Acidemia Foundation put together. It is available under 'sites of interest' at http://www.pafoundation.com/. It is available in English and Spanish.