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| I received this e-mail from one of our SBS Mothers,
Othello's Mom. Our prayers are with the family. Jim,
I regret to inform you and everyone else that Stormy has passed away. She
received her 4 organ transplant on August 23 and passed away a week later.
I have been keeping up with Stormy and her progress through her website
and emails with her mother, Tavi. Their family really needs prayers right
now, they have suffered a tragic loss.
And from Stormy's Mom.
A while back I posted the story on my daughter Stormy. When I posted it I
said it was the hardest thing to walk into her room. I never knew how true
that would be. On August 23,2003 Stormy made history for Indiana with it's
first multi-vescular transplant. At 14 months old my little girl made
history!!! On August 29,2003 Stromy's body could not take anymore and she
died. Her kidneys failed because of the anti-rejection medication and the
fluid build up caused her lungs to fail.
http://www.caringbridge.org/in/stormyraibryant/index. tm |
My daughter was born with SBS. She had 20 cm of active small intestine.
They did her first surgery at 2 days old. That was one of the hardest
things I've ever been through in my life. When she came back they had put
in a central line for TPN and a G-tube for her to eat. Both are permanent
lines. She has had seven surgeries so far. Her last was on the 19th of
September. They lengthened the intestine she had to 48cm. The TPN is now
starting to effect her liver. but they will not even consider any kind of
transplant until she is 20 lbs.
Stormy weighs 12 14 right now. Her body is not responding to the
lengthening at all. She is only living off the TPN. She has had no
feedings since Sept.18th. She can't handle it. They have said that if they
take her off the TPN she will die. But just to look at her you would never
know. She is not a sickly baby.
My husband and I try to go through every day thinking she'll be
home soon. We almost doubt that theory. There has been no word of when she
may come home. She still has never been here and it is the most difficult
thing to look at her room.Jim,
I am the mother of Stormy. One of your stories. I just
wanted to let you know that she has been listed for a liver, small
intestine, stomach and pancreas. They are also removing her spleen. The
intestine has only been transplanted once in Indiana so far and that was
done on July 24,2003 Stormy may be the first multi vesicular transplant of
this kind done in IN. Thank you for all of your support.
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