Samantha Burke

Agenda•Introduction!

• Samantha and Family!

•Samantha’s Medical Status!

•Communication !

•Our Adventure in Rettland2

The Burke Family

Puerto Rico 2013

Lucy

Silly Samantha

-Oklahoma Healthcare Authority http://www.okhca.org/individuals.aspx?id=12065

“A medically fragile condition is defined as a chronic physical condition, which results in prolonged dependency on medical care for which daily skilled (nursing) intervention is medically necessary and is characterized by one or more of the following:

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Medically Fragile

• There is a life threatening condition characterized by reasonably frequent periods of acute exacerbation which requires frequent medical supervision, and/or physician consultation and which in the absence of such supervision or consultation would require hospitalization.

• The individual requires frequent, time consuming administration of specialized treatments which are medically necessary.

• The individual is dependent on medical technology such that without the technology a reasonable level of health could not be maintained. Examples include but are not limited to dependence on ventilators, dialysis machines, enteral or parenteral nutrition support and continuous oxygen…”

Medically Fragile

‣ 1999 Rett Diagnosis

‣ 2001 First seizure

‣ 2005 G-tube, VNS, Nissen Fundoplication

‣ 2012 Spinal Fusion with rods, heel cord release

‣ 2014 Gallbladder removed, Botox

‣ 2014 VNS revision

‣ 1 Pediatrician

‣ 12 Specialty Doctors

‣ 136 PDN Hours/wk

‣ 8 RN’s 1 PCA

Spinal Fusion

VNS Surgery

Spinal Fusion

Gallbladder Surgery

NoYes

My name is Samantha Burke, I am 16 years old. I have a wonderful family that loves ,me to the moon and back, and then some. We have two cats, Bam Bam and Pebbles and a new puppy named Lucy; she is really cute. I love music, reading, watching Glee, going to school, riding my bike with my mom, swinging, talking to my family, sitting at the dinner table, tasting food, sweets, cute boys, Justin Beiber - I know, I know…I don't like hospitals, needles, being sick, seizures (hate them). I can tell when I am going to have them and I try to tell my nurses and my parents. I love my nurses they are my heroes. I am shy but once I get to know people I will open up, but in general, I am a quiet person. I have a teacher who I call the Bees Knees because from the minute we met she believed in me…I have so much to say!

NoYes

Tobii

Kate

Communication !Partners

EXPECTATION drives OPPORTUNITY

PERCEPTION drives EXPECTATION

OPPORTUNITY drives ACHIEVEMENT

ACHIEVEMENT drives PERCEPTION

Getting blood drawn. Samantha can tell the phlebotomist many things now…

Add blood draw page and audio show tobii

On the way home from the doctor. Speaking up in the van.!“I feel > scared, nervous…”

Add core word hospital pages

Samantha’s nurses rely on what she communicates regarding her health and how she feels to base their assessment and medical decisions.

“I love music therapy!” Post Gallbladder Surgery. !Samantha was not feeling well.

Next Steps: Its a Family Affair

Accepting an award at

Future Hopes and Dreams

I’m Reading!

Future Hopes and Dreams

More Good Days than Bad Days