Just a Place in Time

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

A Get Well Thread For Brilee

Thank you Dr.JBHL

 


Comments (Page 5)
6 PagesFirst 3 4 5 6 
on Mar 08, 2011

Brilee looks good DC. How is she doing? Better I hope.

on Mar 08, 2011

Brilee looks great, DC... nice and pink! That's a very good thing.

on Mar 08, 2011

 

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.

on Mar 10, 2011

DP

on Mar 10, 2011

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

on Mar 10, 2011

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?

on Mar 10, 2011

Is Brilee on anticoagulants?

 

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

on Mar 10, 2011

but she is doing very good

Good!

on Mar 10, 2011

Thank goodness for that.

on Mar 10, 2011

Is Brilee on anticoagulants?

No...

on Mar 14, 2011
Update Brilee gets to Leave the Hospital Monday (Today) she Gets to go to the Ronald McDonald House Then goes back to the Hospital for some testing,on Wednesday if all gos good she gets to Come HOME Next Monday...
on Mar 14, 2011

That is just such very cool news! God bless her! 

on Mar 14, 2011

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.

on Mar 14, 2011

good news!

on Mar 14, 2011

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

 

WILL do thanks and thanks to all

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