A 10 year old girl living with Heterotaxy - Polysplenia... Join me in my quest to find answers to my questions as I learn about heterotaxy.
Monday, March 3, 2008
Chloe's Medical Book
With the kids and myself being sick I still find time to update my medical book on Chloe. It is important to have all your paper work in order when it comes to having a child with a rare disease, syndrome, illness, or special needs. We as parents need to familiarize ourselves with our child’s needs. It is important to know what medications your child takes, dosages and time they take it. It is also important to have all there doctor’s names and phones numbers in your book just in case a doctor needs to reach them. Chloe’s medical book is divided into section from what type of doctors she sees to medical letters and update doctors reports. It is helpful to have this for ER purposes. Doctors and nurse are grateful for it. It saves them time so they don’t have to go looking for it. If you child has had x-rays or CT, I would suggest having your hospital put the copies on a CD for you so you can keep in your medical book too. Chloe immunology doctor written out a fever plan letter that ER is supposed to follow this is also in her medical book.
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2 comments:
That is great! I have found in most cases, I know more than the ER doctor and my records help back me up.
We also paid for a medicalert bracelet and there is a phone number on it. They have all DJ's records on file and his ped dr even sent them a list of website explaining the condition - so, if anything should happen when I am not with DJ or if something should happen to both of us, the medical team will see the bracelet and call for the info.
I feel a bit more at ease with DJ in school and activities when he is wearing the bracelet.
Hope you are all feeling better.
The Storrie clan is sick as well. I seem to have the worst of it right now! DJ is doing OK. We upped his antibiotics a few days ago and he is stable.
Have they prescribed regular and daily antibiotics for Chloe?
Hugs to you all. I know how tiring it all can be.
I showed DJ Chloe's picture and her bunny and he wants to send her a photo of his Dolly...and he wants her to come over and play!!!!!
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