DELETE THIS POST it is Obsolete Brilee Needs a Heart transplant
My Niece
Wednesday, January 26, 2011 by Disturbedcomputer | Discussion: WinCustomize Talk
Brilee Needs a Heart transplant
I am writing to you all in hopes you will send Brilee a Get Well soon card.
Brilee is my Great Niece; she was born November 29th 2010, at Children's Hospital in St. Louis, Missouri
She has;
HLHS which is Hypoplastic left heart syndrome
Critical AS; bicuspid aortic valve, dilated LV with poor Function, moderate EFE of the LV, arch hypoplasia.
Intraoperative SVT, which progressed to ventricular tachycardia and ventricular fibrillation, on Digoxin.
Pre surgery large thrombi x2 noted within Left ventricle. Treated with lovenox therapy.
Tricuspid Valve regurgitation (post-operative).
at 10-days-old
On December 9th Brilee had surgery; s/p Norwood reconstruction including an atrial septectomy, division of the patent ductus arteriosus, and placement of a right modified Blalock-Taussig shunt using a 4.0mm Gore-Tex graft.
On January 18th Brilee was life lifted to Children’s Hospital in St. Louis Missouri
She has passed the entire test to be placed on the Transplant List Monday 23rd January. She is an a1 on the list.
Today they took her off the Respirators at 1pm for the 4th time this time Brilee crashed she is now stable and they have her on life support tomorrow Wednesday 26th I hear they will run test to see if she has suffered Brain Damage, If she did they will remove her the Transplant List…
PLEASE send Brilee get well cards… she will be 8-weeks-old January 29th 2011
St. Louis Children's Hospital
Brilee Marriott Rm 7
One Children's Place St. Louis, MO 63110
I know this will greatly lift my niece Jennifer and her Fiancé Sean spirits up..
Thank you.
Pictures
http://www.facebook.com/album.php?id=100001591729901&aid=20978
or
myspace
http://www.myspace.com/disturbedcomputer/photos/albums/brilee/1604516#mssrc=SitesPhotos_SP_AlbumCover_ViewAlbum
Videos
http://www.facebook.com/video/video.php?v=135961053133618
http://www.facebook.com/video/video.php?v=133055596757497
http://www.facebook.com/video/video.php?v=132953656767691
Edited
DrJBHL made a post here
A Get Well Thread For Brilee
Thank you Dr.JBHL
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Reply #22 Friday, January 28, 2011 11:16 AM
Our thoughts and prayers go with her and all the family and friends.
Reply #23 Friday, January 28, 2011 12:39 PM
The doctors are saying, she is doing good and by the looks she has not suffered Brain Damage but they still have to run test over the next few days...
Brilee is fighting the Life support machine (I take that as I good Sign)
That's great to hear DC! 
Reply #24 Friday, January 28, 2011 8:12 PM
Update Jennifer (Brilee's mom My Niece) called and told me they took Brilee off the life support... so she is doing much better..
Reply #28 Tuesday, February 1, 2011 7:12 PM
So good to hear that. Keep the faith going. The longer the stronger. Hearts coming.
Reply #29 Tuesday, February 1, 2011 7:47 PM
All best wishes to little Brilee and her family.With love.
Reply #31 Thursday, February 3, 2011 2:46 AM
Reply #32 Friday, February 4, 2011 2:36 PM
UPDATE:
yesterday
This is Brilee's mom (Jennifer) and dad (Sean) we just want to thank everyone for your support and to let everyone know how Brilee is doing she is in fare condition she's stable her stats keep dropping but they think she just don't like to be messed with though. But she's doing OK we also got the ct scan yesterday they did not find anything but waiting for MRI to be for sure right now they don't think she stable enough to make the trip to the MRI room but she is still on the transplant list THANK YOU ALL SO MUCH.
I just Talked To Jennifer about an hour ago, Her Job Fired her today... which she had the insurance.
How can a Company be so Damn Heartless? 
Please Brilee and her Parents really do need you help.. Please Donate to Brilee Heart Foundation
at this time BHF can only take checks or Money orders Payable to: Brilee Heart Foundtion
as I am still waiting on the Paper work From the IRS I have the EIN # but the Bank needs the IRS forms on record
to open the Account at which will be US Bank
For now Mail Donations to:
10937 Richards Ct.
Lenexa, Kansas 66210
Thank You
Reply #33 Friday, February 4, 2011 2:44 PM
Good News DC, a baby should be no such thing to go through.
Reply #34 Friday, February 4, 2011 2:49 PM
Tell her boss he sucks wind. No worries guy. Better days are coming. Keep the faith.
To you and yours.
Reply #36 Friday, February 4, 2011 10:23 PM
I take it you don't have any form of unfair dismissal laws over there... 
.. or was she casual... 
wow...for a country that claims to be so advanced... the more I read and hear of your health treatment of citizens... and work conditions that would allow that.... it's about time you people got really angry about it.... 
Reply #37 Saturday, February 5, 2011 12:45 AM
@ Syndysiders
She was on no pay Medical Leave Jen told me it was for 12 weeks Brilee is only 9-weeks-old
and prior to that Jen was on paid maternity pay which does not run with no pay Medical Leave..
but they said we will get your gas bill paid I wont say what she said
wow that's a hole new topic there.. they treat Animals in dog shelters better then some jobs treat humans.. People die every year working in warehouse's and factories from heat stroke while the animals in dog shelters are in A/C and heat...
yes we do but Jenn is more worried about Brilee then getting a lawyer... but I hope she does that is just not right to fire ANY Parent that their child is going through a life and death crisis.
To add to my Reply #32
Please talk with you Churches, employers, radio stations, who ever you can think of
I want the Brilee Heart Foundation to be able to help other families that go through life and death medical crisis with their child.
I don't have kids but I know if I did the only thing on my mind would be my child and being right there with them...
I know Sean and Jennifer has not worked since Brilee was born well Jen worked one day Jan 25th and that night Brilee crashed.
Sean's Mom was able to raise some money from her work to pay there mortgage for February all the other utilities have been unpaid since December.
well they was paid on.
I know I just keep going on and on sorry...
Thank you all and God Bless you...
Reply #39 Saturday, February 5, 2011 11:23 AM
Lenexa, Kansas 66210
Reply #40 Saturday, February 5, 2011 5:50 PM
Thanks. I will talk to the admin here and see if she can put me in touch with some groups that may be able to help you. She'll be back on Monday. You may want to look at the local chapter of the Salvation Army. They sometimes can do fundraisers for those in need. Just a suggestion.
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Reply #21 Friday, January 28, 2011 10:42 AM
Duh I should have known that don't ask me what i was thinking