DELETE THIS POST it is Obsolete Brilee Needs a Heart transplant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 #62 Tuesday, March 8, 2011 5:59 AM
Brilee looks great, DC... nice and pink! That's a very good thing. 
Reply #63 Tuesday, March 8, 2011 9:18 AM
thank you both
she is doing good ... Her left lung collasped again the other day (from my post yesterday) do to her new heart is just a tad bigger then her old heart so, it is making her Left Lung Collaspe, she will have to grow into her new heart.
Reply #65 Thursday, March 10, 2011 9:55 AM
Jennifer Crippen the nurse lady was doing this treatment with a little machine thing for her lung were it shakes her chest and kinda bounces a little bit and well the nurse had it to close to Brilee's face and it her in the cheek i was so mad and cried...
By [URL=http://profile.imageshack.us/user/disturbedcomputer]disturbedcomputer[/URL] at 2011-03-10
hey you DAMN Nurse Be more careful Brilee has been through enough Heartache
Reply #66 Thursday, March 10, 2011 10:04 AM
Is Brilee on anticoagulants? A simple bump shouldn't cause that unless she were.... and in that case, it might have been such a light bump Brilee might hardly have noticed, DC.
Try to relax... soon she'll be bumping into things, flopping on her tush, then falling off her bike...
See? If it weren't for the transplant would those things happen? .... so maybe the bruises aren't so bad, right? 
Reply #67 Thursday, March 10, 2011 12:21 PM
I do not know? will find out
Edit:
Jen just told me she has the list of meds and not sure if it is one but she did say Brilee was Srceeming after wards
jen is going to find out cause I told her I want to know !!
and Found out that they are going to put brilee back on the Oxygen just so she does not have to strugle breathing but she is doing very good
Reply #71 Monday, March 14, 2011 4:39 PM
Reply #73 Monday, March 14, 2011 8:41 PM
HOT DAMN!!! Way to go Brilee! So good to hear this DC. Give Brilee a big one for me. You guys, all of you deserve this. 
Reply #75 Monday, March 14, 2011 8:48 PM
WILL do thanks and thanks to all
Reply #79 Saturday, March 19, 2011 2:53 PM
The Dream Catcher <<---St. Louis channel 5 News
11 families has had the Dream Catcher
The dream catcher has become legendary at the Heart Center at St. Louis Children's Hospital. What began as an art project for one little girl awaiting a heart transplant has now become a good luck charm handed from patient-to-patient waiting for new hearts. Many believe it brings a new heart faster.
The average wait for a heart transplant can be 4-6 weeks. It can also take several months. When a young girl who'd waited months for her heart finally got transplanted just days after hanging this Native American dream catcher, a legend was born. She passed it along to the next patient, who passed it to the next patient, and so on. Each child adds his or her own tiny hand-made heart to the bottom of the dream catcher. Today, eleven hearts hang from the bottom of the catcher, representing the eleven children and their families brought closer together through heart transplantation. Many believe the dream catcher brings good luck, or perhaps makes the new heart come faster. But all agree it creates an immeasurable bond between these families and proves that - medically and emotionally - St. Louis Children's Hospital is where the heart is.
Sorry Tried 4 times to get the video in here but no go and I did use the old code and HTML
Reply #80 Saturday, March 19, 2011 3:21 PM
DC.... the vid's there... you succeeded. Try viewing with a different browser.
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Reply #61 Tuesday, March 8, 2011 5:33 AM
Brilee looks good DC. How is she doing? Better I hope.