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This fundraiser ended on 08/17/11

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Please help Chalotte ad her family with this expensive trip and hospital care.

Help Charlotte although originally we started this to get her to Ohio, plans have changed and now the long trip would no longer be in her best interests. With an undiagnosed illness Charlotte has Hospitalized since 5-28-2011 only 4 months old. Excerpt from her mothers journal on Caring Bridge:
Charlotte has been getting worse... pain wise. She has barely slept more than a couple hours in the last few days. She had to have another blood transfusion on Thursday and Friday she started having fevers. Her eyes are constantly glazed over and glassy and she is not perky or happy at all anymore.
She is constantly in pain. Her pain meds just aren't cutting it anymore. She calms down for maybe 20 min and just grunts and fusses but can't sleep.
Her heart rate has gone up significantly along with her respiratory rate. She is laboring when she breathes and grunting a lot. Her resting heart rate is high and when she freaks out every 20 min it jumps to 210-225....her eyes roll back into her head and she has stopped fighting....it's like she is giving up....the pain is too much...

We feel like there is something else wrong. We spent last night begging and pleading with the resident to run tests and x-rays on her to look for something else that could be causing all this new pain....all we got was "it's not urgent let's give her more pain meds". What the hell?!?! This isn't hospice! FIND OUT WHAT IS WRONG WITH MY BABY!!!

This morning they finally came in and took blood for labs and cultures and also urine for cultures. The cultures will take a few days to grow but the labs showed her white blood cell count is up and her CRP is significantly raised which is a marker for infection. So they finally did a chest x-ray to test for Pneumonia, which we won't find out about until tomorrow.

In the meantime they got the pain team involved again and put her on a constant drip of her medicine with bumps for when she gets bad..... so far it seems to be keeping her "comfortable" but she still can't sleep. They just came in an hour ago and have her benedyl and it only gave her 40 min of sleep....so we'll be trying adivan tonight and praying she can get some relief.

With all of this stress and lack of sleep, how is she suppose to heal?! Why do we have to constantly fight them to get anything done around here? It feels like we are literally sitting around watching our daughter slowly die because no one has the guts or the motivation to think outside the box and figure out what is wrong.....

This morning I started researching hospitals. I found the #1 Hospital for Pediatric Gastroenterology is in Ohio. I went to their website and found out they actually have a real life version of Dr House on staff! He is literally employed just to take on complex cases that no one else can diagnose... We wrote him a letter and are desperately praying he is interested enough to take on her case... I don't know how we go about it but we want to transfer there SO BAD!

We also decided to write a general letter to send out to EVERYONE. News stations, Newspapers, National programs, Dr Shows, Hospitals, etc etc etc to try to attract attention. Our thought is if we can get her name out there we can attract SOMEONE who knows something or has treated something similar successfully......we are absolutely desperate for someone to save our precious angel!

I'll keep everyone updated in the days to come but please keep us in your prayers more than ever.... We are truly losing our sanity watching our sweet baby deteriorate and give up on fighting....We need help.....
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