Being prepared
is no stranger to me. At the tender age
of 13 after I accompanied a friend to work at a local bank, I knew the world of
finance was the career for me. It also helped that I was a math whiz and had
an appreciation for money. Back then I
only had to plan and take care of myself.
Hmmm thankfully my family, career, and responsibilities have come a long
way.
Today, there
are days I am lucky if shoes match my outfit and that there are no holes in my
stockings. I run out the door to join
the rest of humanity on the highway in an effort to get to work on time. Conversely, there are days when work has to
be set aside because what's happening at home is a true emergency.
Recently, I
had such a day...ok a week…where work had to be carefully placed on the back
burner. The day started out in its
normal controlled chaos to get to work and get Aislinn’s sister off to school. Aislinn had another plan. She went into a deep seizure. The first step in the seizure care plan was
implemented and failed. The backup plan
was implemented and failed. Panicked and
concerned the final step in the plan was implemented...call 911. Tick
tock...time was running out with the seizure at 10 minutes. Tick tock....15 minutes passed as the seizure
continued as the paramedics were wheeling away my baby on a gurney hooked up to
oxygen.. Daddy was hopping into the back
of the ambulance with his bag in hand to continue to fill in the EMTs.
Tick tock...no
bag was pack for AISLINN! Thank God for
Aislinn's nurse who arrived minutes after the fire department and ambulance. She helped center me to get the essential
items packed for Aislinn. After the ambulance
left I still had to find a safe place for Aislinn’s big sister and pack more items
so I could be on my away to chase the ambulance. The ambulance was already ten minutes ahead
of me with lights and sirens. I prayed and crying the whole way. It seemed to be a lifetime before I saw
Aislinn again at the Emergency Department at Children’s Hospital Colorado.
I learned a
lot from that morning. I learned my
husband rocks in an emergency. I learned
the importance of having an emergency bag ready to grab and literally run out
the door. I now appreciate the
importance of being able to lay out a plan for the fire department and
ambulance.
Humor is good
medicine and the way I put together Aislinn's the emergency plan is no
exception. There is now a calling tree to alert Aislinn’s hospitalist, and
neurologists. A designated bag was created for her. It has a backup feeding pump, chargers, food,
a list of supplements, a list of medications, and a schedule to administer
medications, normal daily supplies (feeding bags, tube replacements,
extensions, dressings, diapers, clothes, etcetera), and a list of supplements. Most importantly, I have a physician's letter directing
treatment for seizures which can be implemented at any hospital or Children's
Hospital! The bag is red. It stands at attention by the front
door. It is also clearly labeled the
"Oh Sh!t Bag”.
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I share this
piece of Aislinn's journey in hopes that
in an emergency you or your loved one have the basic essentials packed along
with a physician's letter to direct treatment for seizures, a head injury,
autism, diabetes, a heart condition and so on.
You might find a perky color, tag, or name for yours too. Maybe it’s a Louie Viton or Coach bag because
you've got swag! It was no fun trying to
think of what was needed in an instant.
It was no fun finding the right treatment or communicating past treatment
when all I could think of is not being with my daughter or worse yet, not
bringing her home.
Be over
prepared. Have a multiple level emergent
plan which includes the best treatment for your condition. Above all pack an "Oh Sh!t Bag" for
you and your care giver.
Much love,
Michelle D.
Voss-Shelley
(Mom to eight year old Aislinn with a GRIN1 mutation)
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