Friday, February 4, 2011

You're are made for so much more than all of this.

What a whirlwind the past few weeks have been!  I barely have time to finish charting when I come home, let alone update this blog!  I am continuing in my first rotation and have experienced so many things since the first two weeks.  I am learning SO much and am working on integrating my textbook knowledge into clinical practice.  This is more difficult than I expected...for 3.5 years child life students have developmental knowledge pounded into our brains, but actually putting that knowledge into practice with a patient is very different.  I thought for sure I would enter this internship with great confidence in the skills that I have formed, yet I feel a lot like a high school freshman surrounded by seniors.  Thankfully those "seniors" are offering a lot of feedback and advice that I can learn from and use in my own interactions with patients.

So far I have learned a lot about short-gut (little to no working small intestine), cystic fibrosis, sickle cell, and much more.  I have become particularly interested in cystic fibrosis, as these patients go through so much.  Unlike a diagnosis such as cancer, there is no major treatment for this disease.  These patients must wear a vest two-four times per day which vibrates the mucus out of their organs.  Duke has begun offering double-lung transplants for children who qualify but this is not a cure since mucus still collects in the intestines.  The life expectancy of a person with this disease is about 30 years of age at most.  It is so hard for me to look into the faces of these children and have such knowledge...  When CF patients have to come in for inpatient treatment because their breathing has become severely compromised, they remain on contact precautions and isolation the entire time.  This means that any person who enters the room must wear a gown, mask, and gloves because of the mucus they are constantly hacking up.  Since these patients are on isolation, they cannot go to the playroom unless I or one of the other specialists has time to set up a private play session when no other patients are allowed into the playroom.  CF patients must never interact with another person who has CF and they cannot be within three feet of any patient at any time.  My interactions with adolescents with CF have been somewhat disheartening...depression is common as well as lethargy.  All I can think of when interacting with these older patients is this song by Mercy Me:

Days will come when you don't have the strength
And all you hear is you're not worth anything
Wondering if you ever could be loved
And if they truly saw your heart
They'd see too much

You're beautiful, You're beautiful
You are made for so much more than all of this
You're beautiful, You're beautiful
You are treasured, you are sacred, you are His
You're beautiful

Praying that you have the heart to fight
Cuz you are more than what is hurting you tonight
For all the lies you've held inside so long
But they are nothing in the shadow of the cross

You're beautiful, You're beautiful
You are made for so much more than all of this
You're beautiful, You're beautiful
You are treasured, you are sacred, you are His
You're beautiful...

These patients are made for so much more than all of this...all of the PICC lines, tube feedings, breathing treatments, vest treatments, PFT's, etc.  I wish they could see this in themselves!

I have had the opportunity to be present for many meetings and rounds the past few weeks, including quality of life.  These meetings are to asses a patient's current quality of life and plan for necessary changes in order for he/she to have the most positive life they can for as long as possible, even if this means just a few months.  These meetings are often emotionally charged and difficult to observe.  I have NEVER seen a medical staff so passionate about their patients.  Nurses, physicians, PA's, med students, social workers, etc. all meet together and come to a consensus on what the next step for the patient should be, whether it prolongs the patient's life or simply provides him/her with a more pain-free, active life for the time that is left.  Every single person in the room cares deeply for the child being discussed and will do whatever it takes to make every second count for that child.  I have never seem such caring teamwork in any of my child life-hospital experiences. 

What a blessing this internship has been so far...I am learning more about myself each day as I learn more about the child life field.  Please continue in prayer for the patients I interact with on a daily basis and the future interactions that will occur.  Also, please consider donating to the MIX 101.5 Radiothon for Duke Children's Hospital on February 15th - 17th.  I promise you it makes a difference!  And even beyond simply giving $20 to the cause, give until it hurts.  That gives you only an inkling of an idea of what these patients' parents go through when their child is admitted.  If you still need some convincing just watch this video clip if you have a few minutes:  And please tell your friends and family about the radiothon and encourage them to give!

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