Friday 17 May 2013

Suddenly the evening changes

   My iPhone dings. I jump. At 10.10 pm it makes me nervous.
   I grab it from the coffee table. 'Epipen given. Can you come?'
   Typing a quick reply, I turn to my husband and our visitor. 'I'm sorry. I have to go'. My granddaughter is having another anaphylaxis episode.
   Within a couple of minutes I'm driving, trying to watch the speed limit, hoping I can get to my daughter's house before she has to board the ambulance with her thirteen year old.  I know her tongue would be swollen, threatening to fill her mouth. The swelling in her throat would be trying to close her wind pipe. I also know the Epipen would lessen the reaction, but I pray as I drive. For now my role is to stay the night with the her two smaller sisters.
   When I arrive, there are two ambulances. A local one that responds quickly and a resuscitation unit that follows up and will transport her to the Children's hospital. There are four uniformed people surrounding her bed. She is sitting up. To the untrained eye, she looks fine.  On arrival they administered an injection of adrenaline and now her air passages are clear again.
   One of the ambos, who hasn't been here before asks, 'Do we really need to take her in?'
   'Yes!'
   'All the way to the Children's?'
   'Yes!'
   'But she can walk to the car?'
   'No!'
   The guy who has attended her on other occassions explains. 'We walked her up the drive way once. It took us nearly an hour to stabilise her on the street before we could leave. This girl may look fine, but she rebounds without notice.'
   The rookie goes to get the stretcher. They pack up and go. I cuddle her twelve year old sister, check the sleeping five year old and settle into my daughters bed. I've lost count of the number of times I've done this. Sadly, we are getting used to it, but tonight is a little more challenging. Tomorrow is Mother's Day.
   The next morning I hold a little girl as she sobs. 'This just shouldn't happen on special days. It's wrong! I want to give my Mummy her presents.'
   'Yes, darling. It's wrong.'  I agree. The whole illness is wrong!
   Together we get dressed and head into the hospital. Our patient should be discharged by the time we get there. But today doesn't go as planned. They have to treat her at 9 am and then again later that night. We celebrate motherhood, in the hospital, with a bar of chocolate. The other girls find places to play for the day. Hospitals are boring!
   That night, I gather them home and ready them for school in the morning. My daughter tries to sleep in the hospital on a dodgy recliner, for the second night running. My granddaughter has a bed but she's unhappy. Her body is now filled with adrenaline  It saves her life every time, but it leaves her full of energy, confusion and frustration.
   This week is Food Allergy Awareness week. The organisers suggest everyone wears one painted fingernail to draw awareness to the problem. Now one in ten kids are allergic to one or more foods.
    What is my granddaughter allergic to? They tell us she is allergic to her own hormones. The doctors are trying their very best, but, in reality, they don't know how to treat it, let alone cure it. (See previous blog)
   There are two other girls with the same condition.     We often run into them in the Emergency department of the Children's hospital. One of those girls has had over 200 doses of adrenaline. She has been affected for two years.
   So can I encourage you to paint one finger nail, and tell others about the affect of allergic reactions.
    Look up anaphylaxis on the internet.
Share this blog and .... pray for a miraculous respite for these girls.

WHAT IS ANAPHYLAXIS?

Anaphylaxis is the most severe form of allergic reaction and is potentially life threatening. It must be treated as a medical emergency, requiring immediate treatment and urgent medical attention.
Anaphylaxis is a generalised allergic reaction, which often involves more than one body system (e.g. skin, respiratory, gastro-intestinal and cardiovascular). A severe allergic reaction or anaphylaxis usually occurs within 20 minutes to 2 hours of exposure to the trigger and can rapidly become life threatening. Taken from http://www.foodallergyaware.com.au/awareness/

1 comment:

  1. Just read this Jo. Terrifying for the poor kid. And heartbreaking for you and the family. Keep on praying for the cure.

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