About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Tuesday, February 5, 2013

Medical Records

     My sister, Tammy, mentioned an idea to me; obtaining and taking all of my own medical records with me to see the specialists. Often when you have been referred to a specialist, it will be at a hospital you have never been to, with doctors that have never treated you, and in a county or state where you do not reside. While medical records can be transferred, sometimes, all of the above reasons make it difficult for your new doctors to obtain copies of some of your records, and thus makes it more difficult for them to treat you or obtain the needed information to know how to proceed.
     Because of the above reasons, I would highly recommend that others obtain copies of all their medical records for themselves, keep them in a file, and take them with you to every doctors visit you have. Blood work results, ultrasound copies, OB charts and notes, medical allergies, and any other information that is specifically important to you, or that you feel holds particular relevance. It never hurts to have these for your own records, as well, but if you have your own hard copies of all your medical records, I am sure the specialists will be grateful to have all available information right in front of them. This will help to ensure the process goes as quickly and smoothly as possible, and that you are also as informed as everyone else.
     I spent the day making sure I have all of my medical records ready for our big visit tomorrow, and also made sure to put my sister down as an authorized person to obtain and handle my records. Normally I would put Joe down, but his FMLA (family medical leave act) time is limited, so he has to save his work days for when surgeries begin; thus, my sister will be attending most of my appointments with me, and her and Joe will take turns being my advocate. I will be sure to request copies of all new information before leaving the appointment tomorrow, as well.
     That would be another important side note: Have a partner in crime. I have three people listed in various ways as contact people and authorized advocates. My father, my sister, and my fiance. My father is listed as one of my emergency contacts because, well he's my Dad, and he lives right down the road from me, so if I never needed anything, he is close and loves me and would be there in a split second. My sister is listed as an emergency contact and an authorized advocate, and so is Joe, because they are both most informed in every step, they both have the highest understanding of what I would want, I trust them both with my life to do as I would see fit, and at any given time, if there is anything I need to know, they also need to know it. Having people legally allowed to step up in your absence is very important! If something were to go wrong or I just needed someone else to help out because of convenience, we already have our bases covered.
     So, obtain all of your medical records, keep copies, make files, and take them with you to all appointments. Also, have individuals that you can trust, who you know will act accordingly in any situation, and authorize them to have access to everything you have access to. Have your emergency contacts already chosen, and have all authorizations and clearances taken care of. Only good can come of having these arranged.

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