Saturday, June 1, 2013

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Be Like A Scout…
“Be prepared.”  We’ll use the Girl Scout motto (and not get into the current Boy Scout controversy.)  I always joke that every six months when we go back to Children’s Hospital we get a new diagnosis.  Well, we haven’t had that 6 month interval in quite some time (10 hospitalizations and counting).  But last time we received 3 new diagnoses, 2 of which could be potentially life-threatening.  Sooo, they sent us home re-trained in CPR and emergency medication administration...
I say re-trained because I was CPR and First Aid certified annually from high school until ironically I had my medically fragile child.  And some techniques have changed so it’s good to be current.  The hospital may even have training on site before you leave.  I think it’s a good idea for parents of special kids and their caregivers to know CPR anyway.  P.S.  I didn’t know when I wrote this that it’s CPR and AED (automated external defibrillator) week June 1-7.

“You must always remember, you are braver than you believe, stronger than you seem…”-Christopher Robin

Before leaving the hospital, it’s a good idea to ask the doctors how to tell if it’s an emergency.  My daughter had her first ever seizure and coded.  We decided no matter what the first time at home we’re calling 911.  Besides cellphones w/ speakers, our home phone and fax machine have speakerphone capabilities so we can talk and tend to her at the same time.  We figure it’s safer to have medical personnel check her out than for us to try to guess.  If your doctor gives you emergency meds., you’ll have to remember to bring them everywhere.  We even put a sticky note on the inside of the front door in fluorescent pink with just the name of the medication on it.  

Also, we didn’t think about how to give emergency medication (rectal) in public.  So what happens if we’re not home?  I read in Exceptional Parent magazine that for privacy some families use those emergency Mylar (yes the same stuff used for balloons) blankets that campers use.  I’d never heard of it before, but they fold up 1 x 4 inches, so I put one with her meds.  I actually found them on Amazon for like $1 each.  What a great idea!  Whatever your child may need outside the home that could be personal, this helps maintain dignity.

Something else we didn’t even think about is how to monitor her at night with this new development.    There are several products on the market but nothing had been “approved” so far, so we’re sticking with one of those sensitive baby monitors that even detects breathing.
You’d think I’d get used to these curve balls but I always feel like I’m starting back at square one with a new child.  I have to remember that she’s still Stephanie.  But it’s easier to handle if you know what you’re dealing with so again I spent time researching the new conditions.  It’s so much easier now with the Internet than phone calls and waiting for packets to be mailed, though sometimes it’s good to be able to ask a human being questions.  Just make sure you’re getting information from good, reliable sources.  

You can’t control everything, but having a Plan B just in case can help families deal with a crisis better, and give their child the best care. 

Remain hopeful,

CPR training:
American Heart Association

 Red Cross

You can also check with hospitals, fitness/wellness centers, county colleges, and evening adult classes. 

Exceptional Parent magazine
Note:  you can also get condition specific information in their annual resource guide.  Call (800)E-PARENT for one free copy.

Health info on the web:
American Academy of Pediatrics

 Health Central

 Kids Health

Maternal/Child Health Bureau Knowledge Paths


 For technical/professional information, search on Google Scholar for journal articles and latest research.


Lauren Agoratus is a parent/advocate who serves as the NJ Coordinator for Family Voices, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB

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