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Disturbedcomputer
Disturbedcomputer
Join Date 02/2007
+137

DELETE THIS POST it is Obsolete Brilee Needs a Heart transplant

My Niece

January 26, 2011 2:25:13 PM from WinCustomize ForumsWinCustomize Forums

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

facebook

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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Disturbedcomputer
Nimbin
Join Date 01/2006
+118
Reply #1 January 26, 2011 3:31:51 PM
from WinCustomize ForumsWinCustomize Forums

i send all my thoughts and prayers to Brilee and hope she is able to have the transplant as soon as possible. Hugs from down under :0

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Disturbedcomputer
DrJBHL
Join Date 04/2002
+4163 moderator
Reply #2 January 26, 2011 4:04:40 PM
from WinCustomize ForumsWinCustomize Forums

Lots of Hope and Love from Doc and all here!

 

 

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Disturbedcomputer
Frankief
Join Date 09/2003
+295
Reply #3 January 26, 2011 4:21:05 PM
from WinCustomize ForumsWinCustomize Forums

The photos are heartbreaking. My prayers and thoughts are with this precious little girl.

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Disturbedcomputer
Philly0381
Join Date 11/2004
+844
Reply #4 January 26, 2011 4:25:49 PM
from WinCustomize ForumsWinCustomize Forums

Brilee and her family are in my thoughts and prayers.

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Disturbedcomputer
WebGizmos
Join Date 09/2003
+735
Reply #5 January 26, 2011 4:27:59 PM
from WinCustomize ForumsWinCustomize Forums

Aww man....I hate seeing little ones going through something like this. Best wishes to Brilee and her family.

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Disturbedcomputer
lisa_corner
Join Date 07/2009
0
Reply #6 January 26, 2011 4:42:03 PM
from WinCustomize ForumsWinCustomize Forums

Get well soon, sweet little darling. I'll buy and mail a card very soon

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Disturbedcomputer
RedneckDude
Join Date 04/2009
+2223
Reply #7 January 26, 2011 4:58:12 PM
from WinCustomize ForumsWinCustomize Forums

Brilee and her family will be in my prayers. God bless the family.

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Disturbedcomputer
Vampothika
Join Date 07/2006
+590
Reply #8 January 26, 2011 4:59:18 PM
from WinCustomize ForumsWinCustomize Forums

what a little darling........all my love and best wishes xxxxxx get well soon.

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Disturbedcomputer
IROKONESS
Join Date 04/2007
+656
Reply #9 January 26, 2011 5:02:49 PM
from WinCustomize ForumsWinCustomize Forums

Well wishes to little Brilee. I think if anyone can make it she can. Her support group are superb. And get some sleep everyone.

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Disturbedcomputer
coffeegrinder
Join Date 12/2001
+136
Reply #10 January 26, 2011 6:10:27 PM
from WinCustomize ForumsWinCustomize Forums

Hope everything goes well for Brilee, my thoughts and prayers are with her and all the family.

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Disturbedcomputer
gmc2
Join Date 11/2003
+296
Reply #11 January 26, 2011 6:59:08 PM
from WinCustomize ForumsWinCustomize Forums

In our thoughts and prayers

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Disturbedcomputer
starkers
Join Date 05/2004
+1153
Reply #12 January 26, 2011 8:14:50 PM
from WinCustomize ForumsWinCustomize Forums

Here's hoping all turns out exceedingly well for this little treasure and her family

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Disturbedcomputer
starkers
Join Date 05/2004
+1153
Reply #13 January 26, 2011 8:15:12 PM
from WinCustomize ForumsWinCustomize Forums

oops, double post somehow, 

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Disturbedcomputer
mrs_starkers
Join Date 09/2006
+556
Reply #14 January 27, 2011 7:53:52 AM
from WinCustomize ForumsWinCustomize Forums

in our thoughts and prayers, get well soon

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Disturbedcomputer
Uvah
Join Date 05/2006
+874
Reply #15 January 27, 2011 8:23:57 AM
from WinCustomize ForumsWinCustomize Forums

All best wishes to Brilee and family. Hope to see her smile big. God bless.

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Disturbedcomputer
Disturbedcomputer
Join Date 02/2007
+137
Reply #16 January 27, 2011 2:30:52 PM
from WinCustomize ForumsWinCustomize Forums

Update

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).

 

 

I want to thank all of Wincustomize for all the prayers and wishes THANK YOU..

 

To a moderator if this is inappropriate please just remove

 

If you would like to  Donate to the: 

Brilee Heart Foundation please make checks and Money orders out to  > Brilee Heart Foundation <  ... 

Mailing address;

10937 Richards Ct.

Lenexa, Kansas 66210

in the weeks. to come Direct deposit will be available... Thank you for your Support. Even One Dollar can help..

 

To the skinners, wallpaper, Icons Makes...

I would like to ask you  if you would Donate your time, Talent to make a Logo that I can use for the > Brilee Heart Foundation <

this is a Non-for-profit Foundation. My idea is an Heart behind the word Heart...  but please if you will do this you are more then free to come up with something else...  the logo would be used with the Name.. I also plan for the  > Brilee Heart Foundation < to move forward and start to help other parents out but I just got it started yesterday.. 

 

Thank you..

 

 

 

 

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Disturbedcomputer
Uvah
Join Date 05/2006
+874
Reply #17 January 27, 2011 6:47:32 PM
from WinCustomize ForumsWinCustomize Forums

Can I google a heart? My graphic skills aren't quite that good.

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Disturbedcomputer
Disturbedcomputer
Join Date 02/2007
+137
Reply #18 January 27, 2011 9:45:56 PM
from WinCustomize ForumsWinCustomize Forums

I Can google a heart?

that's cool but I don't know if I could legally Use it.

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Disturbedcomputer
sydneysiders
Join Date 04/2004
+1042
Reply #19 January 27, 2011 11:31:27 PM
from WinCustomize ForumsWinCustomize Forums

so unfair for littluns to get off to such a rough start.... she seems like a fighter.... best wishes to her...and her parents who I really feel for having to watch their little daughter so ill.... keep the faith.....  

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Disturbedcomputer
Uvah
Join Date 05/2006
+874
Reply #20 January 28, 2011 5:37:04 AM
from WinCustomize ForumsWinCustomize Forums

According to the website they are free clip arts. I should make sure first I guess or try to make one. Probably safer.

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Disturbedcomputer
Disturbedcomputer
Join Date 02/2007
+137
Reply #21 January 28, 2011 10:42:04 AM
from WinCustomize ForumsWinCustomize Forums

According to the website they are free clip arts.

Duh I should have known that don't ask me what i was thinking 

 

try to make one. Probably safer.

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Disturbedcomputer
seldomseen
Join Date 09/2002
+28
Reply #22 January 28, 2011 11:16:59 AM
from WinCustomize ForumsWinCustomize Forums

Our thoughts and prayers go with her and all the family and friends.

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Disturbedcomputer
WebGizmos
Join Date 09/2003
+735
Reply #23 January 28, 2011 12:39:00 PM
from WinCustomize ForumsWinCustomize Forums

Update

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!

 

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Disturbedcomputer
Disturbedcomputer
Join Date 02/2007
+137
Reply #24 January 28, 2011 8:12:29 PM
from WinCustomize ForumsWinCustomize Forums

Update Jennifer (Brilee's mom My Niece) called and told me they took Brilee off the life support... so she is doing much better..

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Disturbedcomputer
butch123
Join Date 01/2004
+201
Reply #25 January 28, 2011 9:31:51 PM
from WinCustomize ForumsWinCustomize Forums

All best wishes to Brilee and family.

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