gijanet
Well-known member
Both my guts and heart have been ripped out yet again...........
Zoe, a beautiful little five year old girl, just lost her battle with her CHD. She died yesterday in her mother's arms. Her mom Tammy has been so supportive of me during Katie's ordeals and frequently posted on Katie's carepage. I am afraid that I am the one suffering a meltdown today.........all I have been doing is sitting around crying. Katie made me a card and told me that everything is going to be okay. I guess this one just really hits too close to home as we await Katie's next surgery.
You guys are so good about praying. Please pray for this family as they try and deal with their overwhelming loss. TAmmy is seven months pregnant, too, so I hope that she manages somehow to take care of herself.
Below is Tammy's post, and Zoe's picture can be seen at www.tchin.org/portraits/zoe-2.htm .
Thank you so much. Janet
"I wanted to let everyone know that Zoe passed away today.
The last few days have been hard. Zoe's heart did recover from the fontan reversal last week, but unfortunately when they brought her up from the reversal surgery they had to perform CPR and the lack of oxygen caused fluid build up in her brain that got worse over the last few days and eventually made her completely unresponsive to their tests.
Apparently she also had a lot of blood clots that were cleaned out in her heart during the reversal and she also may have had some of those too in her brain. The main reason the Fontan failed is b/c her left ventricle could not pump efficiently enough.
They took her off all of her sedation yesterday b/c her liver was damaged and they thought that she wasn't waking up b/c the drugs were starting to build up -- in hopes that she would start to wake up and show some signs that her brain was not damaged, but things just got worse over the night and eventually she was not showing any signs by the morning. This week has been the worst possible thing I hope to ever have to go through and I find comfort in knowing that Zoe doesn't have to ever feel any more pain or ever be tortured again. I wish she was never put in these unfortunate circumstances. She was such a perfect little girl who never deserved this -- the last thing she said to me before they sedated her for the reversal was that she just wanted to dance. She loved Angelina Ballerina and always wanted to dance around. Now she can.
I was able to hold her until her heart stopped today at 12:30 - I am so much in shock right now, and appreciate all of the good thoughts and prayers that everyone has sent out.
Even the surgeon wished that we would have never tried the Fontan again, but said it was the only chance at buying her significant time. If we would have only known.
This is all so unbelievable. I really have loved talking to everyone and know that this fortunatly isn't the way things usually go and kids are usually okay and pull through.
Thankyou again for everything that everyone has done - I love all of you.
Tammy, wife to James, and Mom to beautiful Zoe Sequoia.
7-20-99 to 9-5-04
www.tchin.org/portraits/zoe-2.htm
Zoe, a beautiful little five year old girl, just lost her battle with her CHD. She died yesterday in her mother's arms. Her mom Tammy has been so supportive of me during Katie's ordeals and frequently posted on Katie's carepage. I am afraid that I am the one suffering a meltdown today.........all I have been doing is sitting around crying. Katie made me a card and told me that everything is going to be okay. I guess this one just really hits too close to home as we await Katie's next surgery.
You guys are so good about praying. Please pray for this family as they try and deal with their overwhelming loss. TAmmy is seven months pregnant, too, so I hope that she manages somehow to take care of herself.
Below is Tammy's post, and Zoe's picture can be seen at www.tchin.org/portraits/zoe-2.htm .
Thank you so much. Janet
"I wanted to let everyone know that Zoe passed away today.
The last few days have been hard. Zoe's heart did recover from the fontan reversal last week, but unfortunately when they brought her up from the reversal surgery they had to perform CPR and the lack of oxygen caused fluid build up in her brain that got worse over the last few days and eventually made her completely unresponsive to their tests.
Apparently she also had a lot of blood clots that were cleaned out in her heart during the reversal and she also may have had some of those too in her brain. The main reason the Fontan failed is b/c her left ventricle could not pump efficiently enough.
They took her off all of her sedation yesterday b/c her liver was damaged and they thought that she wasn't waking up b/c the drugs were starting to build up -- in hopes that she would start to wake up and show some signs that her brain was not damaged, but things just got worse over the night and eventually she was not showing any signs by the morning. This week has been the worst possible thing I hope to ever have to go through and I find comfort in knowing that Zoe doesn't have to ever feel any more pain or ever be tortured again. I wish she was never put in these unfortunate circumstances. She was such a perfect little girl who never deserved this -- the last thing she said to me before they sedated her for the reversal was that she just wanted to dance. She loved Angelina Ballerina and always wanted to dance around. Now she can.
I was able to hold her until her heart stopped today at 12:30 - I am so much in shock right now, and appreciate all of the good thoughts and prayers that everyone has sent out.
Even the surgeon wished that we would have never tried the Fontan again, but said it was the only chance at buying her significant time. If we would have only known.
This is all so unbelievable. I really have loved talking to everyone and know that this fortunatly isn't the way things usually go and kids are usually okay and pull through.
Thankyou again for everything that everyone has done - I love all of you.
Tammy, wife to James, and Mom to beautiful Zoe Sequoia.
7-20-99 to 9-5-04
www.tchin.org/portraits/zoe-2.htm
Bonnie
