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Copyright © 2013 Isabella Nicole Kurek Memorial Foundation, Inc.
All rights reserved. Questions, comments or broken links, please contact
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A year has gone by since writing those words. There have been good days and bad days, but throughout it all, Isabella has
remained happy and stable.  Our frustrations have shifted focus from the hospitals and doctors, to the insurance
companies and medical supply providers.  It seems there will always be a battle to fight.  Despite this, the past year has
taught me a lot about life, about love and happiness, and about myself.

Initially, it was a bit scary to go back home after being in the hospital for so long.  I took an additional two weeks off from
work to stay home with Isabella while we adjusted to the new routine.  We were all very happy to have her home for
Christmas and her first birthday.  Both occasions were spent with family and friends.  Everyone was surprised and happy to
see how well she was doing.

We quickly became comfortable with her daily care at home, including use of the feeding pump and nebulizer, frequent
deep suctioning and weekly trach changes.  Initially, the most difficult transition was actually to relinquish some of her care
to the in-home nursing staff.  I had become so comfortable caring for Isabella that I was reluctant to leave her in the hands
of anyone else, even a nurse.  I wished I could stay home with her every day.  I started working again, three days per
week.  The only nursing care we require are those three, eight hour shifts during the days while I am at work, a far cry from
the “around-the-clock” nursing care the hospital was insisting we needed.  After some initial separation/stranger anxiety,
Isabella quickly bonded with her nurses and continues to enjoy her days with them.

During our first month home, Isabella developed persistent fevers.  At first I tried to blame it on teething, but the fevers were
just too high.  She also began having trouble falling asleep and would wake up crying and uncomfortable.  Many doctors’
appointments resulted in few answers.  X-rays, blood and urine cultures were all negative.  The source of the fever was
never identified, but upon our request, Isabella was prescribed Tylenol with codeine for the nights.  She immediately began
sleeping more comfortably and would awaken happy and well rested… without a fever.

I decided it would be worthwhile to add a second health insurance for Isabella through my employer.  I hoped this would add
to our total benefits and cut down on our co-pays.  Initially, this caused more problems than it solved.  The two insurance
companies fought over which one was responsible for paying the bills.  Shortly after adding the second insurance, we were
denied coverage of Isabella’s formula and all enteral supplies.  I even had to return her feeding pump.  We were also told
we would have to find a new nursing company because our current one was no longer in-network.  Eventually, the
insurance companies negotiated prices for the formula and nursing care which meant we wouldn't have to starve our baby
or find new nurses.  Even with two insurance companies, our benefits were soon running low.  The cost of renting the
suction machines, nebulizers, pulse-oximeters and ventilators was an incredible drain on our benefits.  To cut costs, we
decided to return all of our rented equipment (except for the ventilators) and bought our own on e-Bay.  We were also able
to replace our confiscated feeding pump, stock up on suction catheters and formula, and find a wonderful handicapped
stroller called a Kid-Cart.  The stroller has become invaluable when it comes to trips out of the house.  Isabella loves it,
which makes our time outside so much more enjoyable for all of us.   She especially likes strolls through the park and trips
to the playground and children’s museum with her big sister.

The outpouring of support from the community has been a pleasant surprise.  Upon our release from the hospital, our
family’s church generated a sizeable collection to help cover our medical expenses.  A local physicians group donated a
new hospital bed for our home and is currently trying to secure a ventilator for Isabella.  The Families of SMA organization
donated some trachs and suction catheters and loaned us a percussor for Isabella’s chest PT.  We truly appreciate
everything that everyone has done to help us.  I would especially like to thank my best friend, Harlan, and my sister, Anna,
for their continuous generosity, support and love.  I wouldn't be where I am today without you.

Medically, Isabella continues to do well and remains stable.  Since leaving the hospital a year ago, there have been no
episodes of pneumonia and no need for hospitalization.  We regularly visit the pulmonologist and gastroenterologist for
rechecks.  She receives weekly visits from the physical therapist and will soon be starting speech therapy.  Her current
medications include Xoponex, Atrovent, Pulmicort and Tylenol with codeine.   For the last six months we have also been
giving Isabella pulse therapy of nebulized antibiotics to combat bacterial colonization of her upper airway.  We recently
added Robinul to her daily medications to reduce her oronasal secretions which had become quite profuse.  The
medication has decreased the need for suctioning and will reduce the risk of future aspiration pneumonia.  Lastly, through
the winter months, Isabella also receives the RSV vaccine from her pulmonologist.  This fall, Isabella underwent an
overnight sleep study at the hospital to evaluate her ventilator support relative to her respiratory effort.  It was determined
that she would benefit from a change from CPAP to BiPAP.  Since the adjustment, Isabella seems to be having an easier
time breathing and less episodes of distress.  We are happy to say that her current regimen of medications and ventilator
support has been successful in helping to keep her happy, healthy, and comfortable.

Isabella has done so well since leaving the hospital, in fact, that her case study is being used to implement changes in the
hospital’s ICU and respiratory wards.  We were very happy and proud to learn that she is being used as an example to
prove not all cases should be treated alike.  We broke the mold when we pushed to have her transferred from ICU to the
respiratory ward, and ultimately released early.  It is nice to know that our efforts may now help some other family, in the
future, to return home quickly and begin living their life again.

In many ways, Isabella is like any other two year old.  She has her own distinct personality.  She loves to watch cartoons,
especially Mickey Mouse and Pooh, listen to music, and draw with markers.  She seems to be at her happiest when she is
doing anything with her big sister.  She is still able to move her head from side to side, move her arms and hands, and has
a full range of facial expressions.  Most of the time she smiles, laughs, and is happy, but occasionally she still shows some
of her two year old cranky attitude… just to let us know who is in charge.  She has a small vocabulary of words, noises and
gestures that we have grown to understand.  Hopefully her speech therapy will improve our communication, but even if it
doesn't, she is getting the job done.

There is no way I can say this past year has been easy.  It has been a transition and a learning process for all of us.  As we
prepare to celebrate her second birthday, I look back on all we have endured and all we have accomplished, and I look at
Isabella’s smiling face and I have no regrets.  She is still my baby girl and always will be.

…….. If you have a child, please give them a kiss and let them know that you love them.


Continues at Part 3
By Joanna and Harlan...