Help Alicia Regain Her Life

When going to the gofundme donation, it is a little tricky:  it takes you right to tip instead of the donation.  Just put OTHER. and go above and where it says donation -  make the donation.    Then put "0" under tip.   If you don't adjust the tip, the           gofundme company with take 10% away from the donation.

On April 3rd 2009, Alicia fell asleep at the wheel.  She was life-flighted to the hospital where they pronounced her dead by physical exam only.
Three days went by without her brain injury being treated, all while I begged and pleaded to treat her brain injury.  
I am an RN so I knew they could do something.  I begged to put in an external ventricular drain or to do a
Decompressive Craniectomy.
They refused and allowed that Golden Hour known in medicine to close. 

Alicia's body was kept alive by a ventilator while they waited on her license from the police to see if she was an organ donor.  I knew she wasn't, however they needed proof.
I knew because I had mentioned once to her not to put herself as an organ donor because medical schools often use the cadaver for practice.
I had also told her if something ever happened they would ask me if I wanted to donate her organs.  
So when the license showed not being a donor, I had to make the hard decision to take her off the ventilator or keep her on.  In my head all I could hear was, "Mom do something!" in Alicia's voice.
So I pleaded as I had for the first three days when she first arrived to the ICU.  Do something!  They still didn't do anything.  
I demanded to talk to the Chief of Neurology, so they put him on the phone.
While talking to him she started sympathetic storming, her fever, blood pressure, pulse went up and she moved her thumb. The Chief of Neurology demanded to talk to the doctor in charge.
At that time they did a CT and MRI which showed a mid-line shift of the brain so they immediately put in the external ventricular drain that I begged them to do three days ago. 
I knew the damage was already severe as doctors told me I was not in touch with reality and she will never wake from her coma.  
I discussed with Alicia's grandfather and sister about what we should do.  
We decided to give it 4 months and then make a decision.
Well, she awoke from her coma just around 4 months after the accident.
There was no way I could let her go.

Over the years, we have tried many things to make her more aware.  She has made slow progress.
In the summer of 2011 we went to the East Coast for a brain injury study.  
I had overheard the specialist tell another family, that if a patient doesn't emerge into full consciousness they will most likely die within 9 years.
Well, Alicia has lost nearly 10 years of her life in either a minimally conscious state or, worse, just severely disabled.
I've done my best to keep her healthy.

- She has no contractions, and is very strong, almost too strong, and confused.  
- She must be very scared, because she holds onto me very tightly,
   and always wants someone to hold her hand.  
- Her eyes are reactive to light, and it is possible she can see shadows with her right eye. 
- She received a BAER test at Children’s hospital in San Diego which showed that she can hear,
   but once the signal reaches the midbrain area, the signal doesn’t register.
- She can take some yogurt consistency food by mouth, but I’m not sure if she can smell or taste.
- She smiles, she frowns, she pushes people away, and reaches out for someone to hold her hand.  
- She makes a proud face when she accomplishes something.

I feel like the golden hour known in Medicine is closing once again on Alicia.
Why, because everyone in the study from 2011 has now passed, except Alicia.  Alicia does have pleural effusion due to her VP shunt draining around her lungs and her
baclofen pump also draining in the same area.
Alicia also has osteoporosis which is another reason we need more physical therapy.  
If Alicia is granted the opportunity for Deep Brain Stimulation either for her Parkinson's tremor
or Dystonia, her physical ability will improve greatly.  
It will also reduce the need for the baclofen pump and we can finally have it removed.  
I know Alicia will never fully regain her life as it was, but the quality will greatly improve.   

My biggest fear is Alicia will die before science catches up.  I believe science is catching up.  I pray she will one day also e able to see again.
UCSD received a donation of $50 million to the Shiley Eye Institute from Andrew Viterbi
to restore patients vision to even people who are completely blind.
This is a quote from the San Diego Union Tribune Thursday August 23rd:
"Dr Robert Weinreb, head of the Shiley Eye Institute, said it's not too crazy to think that Viterbi's
gift could play a significant role in helping find the path forward for successful transplanting the
stem cell-derived optic nerve and retina cells that UCSD researchers are already able to grow in the lab."

This is why we need your help. Your donation can help get Alicia the physical therapy she needs in order to lessen the tone in her body and strengthen her for surgery to make her a more likely candidate for Deep Brain Stimulation, 

We are looking for contributions to help fund her physical therapy sessions.  

Thank you for reading this. I know it is rather lengthy.

Sincerely Yours,

Vivian Sue Bailey
Mother/Conservator/RN (in that order)

We just tried donating to go fund me. It is a little tricky they take you right to tip instead of the donation. Just put other and go above and where it says donation. Then put 0 under tip.

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Vivian Bailey 
Bonita, CA
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