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 4)
6 PagesFirst 2 3 4 5 6 
on Feb 11, 2011

Happy Birthday DC. Hope all is well.  Does anyone know how to set this up???

on Feb 11, 2011

DC,

Write to President Obama and describe the situation fully. Your wife's former employer might not like getting a call from someone at the White House or Justice Dep't. They just might change their minds.

on Feb 11, 2011

Uvah, thank you for the Birthday Wish.. 

 

Dr.JBHL I will do that...  Side note but I know you know this She is not my wife she is my Niece 

Doc do you know the White House / President Obama E-Mail??

I get this one here but just want to make sure I'm not E-Mailing a spammer

http://www.whitehouse.gov/administration/president-obama/

 

I got the Donation Button up and it was not easy,,(wow I would have more, enjoyed pulling a teeth out with Rushed Pliers ok maybe not that bad..) I know I liked YouTube

 

of course it my not work yet as PayPal has to send verification to the bank and it takes 2 to 3 business days to do..   I tried to do the right now one but it had 5 Questions it asked and the bank only had 3... 

on Feb 21, 2011

Good News, Brilee had her Heart transplant Surgery Feb. 15th she is doing good and Will be able to go home in about 3 weeks ... IF all goes good.

 

on March 12th we're having a Benefit for Brilee. There will be Live Music, Comedy Show, Bar-B-Q, Bake sale, Texas Hold'em, (Auction, Raffle will be doations we collect) Grand Prize at the end of the Benefit. Location: Independence, Missouri (the Courthouse Exchange Square) Everyone is welcome to come..


 

on April 2nd there will be a Pancake Breakfast at Applebee's in Excelsior Springs, Missouri

from 8am to 10am tickets are $6.00 each $2.00 of the $6.00 goes to Applebee's. If you would like to give more you can Applebee's is only taking $2.00

 

 

 

 

on Feb 21, 2011

Excellent!! Way to go Brilee!  I'm happy for you and yours DC. I'm sure all will go well and you'll be able to enjoy your grand niece. Be well.

on Feb 21, 2011

To Disturbed Computer...

     I'm so happy that Brilee got her heart transplant!!!! I hope all goes well with it and she is going to be ok now. My condolences go out to the family that lost their child. Organ donation is sooo very important. If I could... when I die I would donate all organs that could be donated when I die so that someone else could live. If only more people would donate their organs. I'm so happy for Brilee... Disturbed Computer. You've just put a smile on my face... and I don't smile that often. Thank you.

 

                                                                   The Cats Meow Mix  

on Feb 21, 2011

The Cats Meow Mix
To Disturbed Computer...

     I'm so happy that Brilee got her heart transplant!!!! I hope all goes well with it and she is going to be ok now. My condolences go out to the family that lost their child. Organ donation is sooo very important. If I could... when I die I would donate all organs that could be donated when I die so that someone else could live. If only more people would donate their organs. I'm so happy for Brilee... Disturbed Computer. You've just put a smile on my face... and I don't smile that often. Thank you.

 

                                                                   The Cats Meow Mix  

Well said. I feel that if one dies from non infective or malignancy, nothing is lost and everything gained through organ transplantation. It's the right thing to do, person's faith permitting.

on Feb 21, 2011

To Dr. JBHL...

     I have epilepsy... and now have MS. Is it possible to donate organs with MS since it is an immune system disorder. I would think not... what do you think. I am also the Universal Donor with O+ blood but am told I can't donate with all the seizure drugs I have to take. I recently wanted to try to be tested for a BMT but was also told no. I understand because of the MS. I wouldn't want her getting Graft vs. Host disease. I feel so bad that I cannot donate at least blood since I am the Universal Donor. I would like to donate my organs at least. With the MS can they be used? Is it possible?

 

                                                                                   The Cats Meow Mix

on Feb 22, 2011

(Thank you all to the above posters)

 

To the Family who let there Child live on.. I know All the Families that you helped will always cherish your kindness.

I am so, deeply sorry for your loss.. Words can't express my thanks for your kindness, I know it had to be a very difficult decision to make, ultimately you know your child is living on in so many Children... 

 

To the Family:

Just remember she never really dies. For in our hearts her spirit lies.  
If she could talk I know she'd say mommy, daddy please don't cry for I am not gone I am flying high.  
I am that brand new twinkle in the sky.
I know one day I'll see you again, and until then hold your heads up high, remember I am standing by, for I am the light of the moon and the sunlight in the sky.  
So please be strong and it won't be long till we're together again..
We all love you little Angel...

 

 

on Feb 22, 2011

Very ...... touching poem. Tugs at the heart strings.

I saved the poem. It is so beautiful.

on Feb 22, 2011

The Cats Meow Mix
To Dr. JBHL...

     I have epilepsy... and now have MS. Is it possible to donate organs with MS since it is an immune system disorder. I would think not... what do you think. I am also the Universal Donor with O+ blood but am told I can't donate with all the seizure drugs I have to take. I recently wanted to try to be tested for a BMT but was also told no. I understand because of the MS. I wouldn't want her getting Graft vs. Host disease. I feel so bad that I cannot donate at least blood since I am the Universal Donor. I would like to donate my organs at least. With the MS can they be used? Is it possible?

 

                                                                                   The Cats Meow Mix

People who have been diagnosed with multiple sclerosis cannot give blood. This is a blanket ban that applies to 'chronic conditions of unknown etiology' and includes a range of other conditions such as rheumatoid arthritis.

People with MS also cannot donate bone marrow. To join the NHS Blood and Transplantation Marrow Registry you have to be a registered blood donor. Although being a blood donor is not a requirement when registering with the Anthony Nolan Trust - a charity that finds bone marrow donors for people with leukemia and blood disorders - MS is also one of the excluded conditions on this register.

People with MS can be considered as organ donors.

The reasoning behind this distinction is based on the fact that the cause of MS is currently unknown. Until there is evidence to prove otherwise, it is considered sensible to avoid donations from people with MS when there may be something in the blood that is a contributing factor to developing the condition.

As an organ transplant requires the consent of the recipient, they can be informed of any potential risks before they make their decision. The availability of organs is also limited and so any potential risks are weighed against the the consequences of not proceeding with the operation.

In comparison, it is not possible to identify a donor at the point when the blood is being used, so any potential risks have to be screened out at the point of donation.

Hope this helps answer your question.

on Mar 07, 2011

Update

 

brilees left lung collasped again so it will probably be a couple of weeks longer

on Mar 07, 2011

Hang in there buddy. We're rooting for Brilee! And the rest of the family.

on Mar 07, 2011


By [URL=http://profile.imageshack.us/user/disturbedcomputer]disturbedcomputer[/URL] at 2011-03-07

on Mar 07, 2011


By [URL=http://profile.imageshack.us/user/disturbedcomputer]disturbedcomputer[/URL] at 2011-03-07

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