Leilani’s story Toddler pancreatic insulinoma

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Leilani’s story



On February 19th 2020  we were
unable to wake our 2 year old
daughter in the morning,  terrifying as it was she was breathing and
looked so perfect, not
understanding what just happened as she started to come out of what
seemed to be a deep sleep.

A quick visit to the Doctor and
some test turned up nothing .

A couple days later here we go
again.

This time we were unable to wake
Leilani. 

We thank God for the 

Hillsborough county fire
department

Amazing group of men and women. When they arrived Leilani’s glucose was 14 within minutes they were
able to bring Leilani’s  glucose up to
45.
What were we dealing with. 

Leilani is our 2 year-old
daughter who was diagnosed
with an insulinoma of the
pancreas just in time for the  COVID-19
pandemic to complicate everything. 

In the following 9 month we were
in and out of the ER with numerous hospitals stays.
Many times Maria
and Leilani would not be allowed
visitors for weeks at a time. 
Maria Leilani’s mom worked
tirelessly without sleeping not
accepting the 
“she is fine all test are normal”.  

Maria wanted to make sense of
what we were seeing.
In the beginning we were just being sent home and dismissed .

Doctors were saying she is dehydrated or possibly pre diabetic even epilepsy , the one diagnosis
that made the most sense was  
Glycogen storage disease.

NONE OF THE ABOVE WERE
EVEN CLOSE!

As Leilani’s episodes were
becoming more frequent a
New Possible diagnosis.
We started with one medication
than two and a third although
nothing was making a noticeable
difference. 
Leilani  would need to have her
blood checked every 20-30 minutes as we had no way of knowing when her glucose would drop especially
at night.

 Leilani was starting to lose
balance

she would let us know by saying
whoooo I’m falling”
mommy my tummy hurts .


“Not wanting to eat”

 Leilani will need a
feeding tube placed in her tummy
as She lost the urge to eat.

As of today Leilani is completely
tube feed.

More meds were prescribed with
no real effect.

DEXCOM to the rescue , a device
attached to her tummy. we now see
Leilani’s glucose and know when it’s heading in a bad direction. 

All this time Leilani’s blood glucose
would continue to  drop from 140
to 30 in less than 10 minutes after a feeding. 


Enter a powerful  
injectable medication, mommy
would now need to inject a needle
into Leilani’s leg every 5
hours.

Some relief in the first couple of
weeks.
Leilani blood glucose would
stabilize for a few hours, and then
drop to 70 50 up to 90 and back
down to 30.

What was going on in Leilani’s body.

Our Search for answers continued.  


Medication was helping but the
doses we're at their max.  

We used orange juice maple syrup
even ketchup packets ,
you name it ! just to keep her
glucose up. 

Thank goodness mommy found  
small packets of Walgreens glucose as this was our life saver.

For the Next few months we would inject 40 mg directly into her
feeding tube every two hours just
to keep her blood glucose up until
the next needle of meds.

We were failing Leilani.

The time had come Leilani would
need to be hospitalized, as we were unable to stabilize her at home any
longer. 

It has now been  10 day in the
hospital a Pic Line was needed as
Leilani’s glucose is still all over the
charts , spiking to 450 and dropping rapidly to 30.

 Leilani not understanding why she can not go play.

 Finally convinced mommy to take a break for the night and go home, all the while wanting to get back to the hospital to be by her daughter side. Unfortunately with no discharge
date in site this will be a long
journey.  
Honestly women truly are the
stronger species my one night in
the hospital with Leilani and omg
I’m-tired - back hurts -hungry and
completely overwhelmed.
Enough about me. 
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Thanksgiving day.
Leilani and I are enjoying each
other’s company at St joseph’s
Hospital although our
time here is also coming to an end.
In the coming days an air
ambulance will take Leilani to
children’s hospital in Philadelphia.

Yes mommy will be back bright and early tomorrow.

Our constant quest for knowledge
trying to make sense of what Leilani was up against would bring us in
many different directions as this is an extremely rare illness, and even harder to diagnose.  

How does everyone cope with not
just the pressure of feeling helpless, but the constant issues with
insurance co pays, deductibles,
prescriptions, feeding tube supply
back orders and National shortage of the critical medicine Leilani
needed ,the list goes on.

All funds received will go directly
to Leilani’s medical and future care.


While sitting with Leilani today, she points to a doggie picture on the
iPad , turns out Drake has an
Insulinoma story on the go fund me site as well.  Who knew52861250_1606426320570477_r.jpeg

Not sure how long we will be in
children’s Hospital of
Philadelphia.

Mommy will fly with Leilani and I
will drive .

Thanks for reading Leilani’s story.

Happy Holidays   

 

Donations

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  • Anonymous 
    • $20 
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    • $150 
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  • Rebekah Torres 
    • $40 
    • 29 d
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    • $50 
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    • $100 
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Organizer

Anthony Patrignani 
Organizer
Plant City, FL
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