Sunday, July 09, 2006

Because You Asked.....

Some of you asked for a little more info on Laura....here it is:

Laura was my sister's stepdaughter. She passed away last September. She was born with a rare lung disease. Don't ask me what, because I can never remember the name, but they used the short form, PID, in referring to it and I always think of an STD with that so I rarely use it. Pulmonary something. It was so rare that Laura had an extensive autopsy done after her death and her parents had to undergo testing as well to do studies on the disease to try and help other families going through the same thing. She had a feeding tube until she was five years old. She spent much of her life back and forth to doctors and hospitals and took it all like a trooper, although she hated it all. She used oxygen ALL the time. It was so odd not to hear the tanks clanking around in my sister's car. Her parents were told very early on that she would not live a full life. Even with a lung transplant she was only looking at a life to her thirties at best. Her disease started progressing about two years ago and her doctors redosed her medications, her therapies were increased, and her activities were limited, but eventually they recommended a transplant and after much persuasion Laura's parents convinced her to go for it and she and her biological mom moved to St. Louis and waited. And waited. And waited. She had the rarest blood type and she was extremely small. She went on new medications that puffed her like a beach ball. That was hard on a soon to be high school girl. She waited out the summer and her doctors gave her the okay to enroll in school in St. Louis. She loved school and was so excited. She went for three days and made a few friends and was happy. Then she got an infection, I don't know what exactly, that sent her into the hospital and she never left. What should have been a routine trip (for her) for antibiotic drips and lung treatments turned into our worst nightmare. On her tenth day there (they never could get the antibiotics to work) she was talking to her mom and beading a necklace when she said she didn't feel good and fell backward. She went into cardiac arrest and coded for ten solid minutes. She was in a drug induced coma after that episode but they slowly started bringing her back and she was quite lucid, squeezed my sister's hand and shook her head when she asked her if she wanted her to quit talking (my sister's a talker), but then she started to have seizures and they would drug her up some more and this went on for about four or five days when finally she stopped squeezing hands and her kidneys quit functioning and the rest of her organs started failing. They said the shock from the machine, what do you call that? The one you see on ER that they shock people's hearts with? Anyway, using that for as long as they did damaged her organs beyond repair and when her organs started failing she became brain dead. Her doctors advice was to discontinue life support, which they did. It has been extremely traumatic to my sister. Although she was not her "real" mother, she felt like she was. She was a second mom to her most of her life and in turn we were another family to her as well. She considered me her aunt and my parents her grandparents. We loved her to pieces and she loved us right back. It was really hard to see them all pile out of that car without her. Since we live so far apart it is easy to push it into the back of my mind or pretend she is at her mom's when I call but the family dynamic has shifted, someone is missing and it is sad. Abigail doesn't understand death yet, she is only three, she still thinks she is coming home after the doctors make her better. She asked me once if I missed Laura and I told her, yep, sure do, and she said she did too and couldn't wait until she got home because she had so much to show her and tell her. It was one of the saddest things I have ever heard.


Soooo.....that's the story on Laura. One day I will give you the story on the rest of my sister's family (it's a doozy) but we have things to do and people to see here.

6 comments:

Jennifer said...

Thanks for the story! I read all of Laura's site when I first started reading your blog a few months ago!

sweet memories said...

I dont know how a mother, an aunt, a sister, goes through something like this, my heart is sad for you and your family.I am sorry that this happened to you. I did read sugar bears site a while back too, and her mother's strength really touched me...when you hear something like this, I always look at my life and thank god for everyone's health. . I am sorry for your loss, your sisters loss, your nieces loss, her cousins...you guys are all in my thoughts and prayers...

firstborn said...

andria,

thanks for sharing laura's story...i've been to her site since i started blogging with you a few months back & i am even more touched now than i was when i first read about her in your blog.

she was a very special person who will be sorely missed but never forgotten. take comfort in knowing that she is no longer suffering she had on her last days on this earth & that she is watching over you guys now.

kelly jeanie said...

Thank you for sharing her story. She sounds like she was a special person.

Lynsey said...

Yes thank you for filling us in. She sounds like she was an amazing trooper through all that. Really makes me think of all that I take for granted as well.

Hopefully Abigail will be able to understand one day. Kids are so unbelievably strong though, aren't they?

Pro-Divorce said...

I'll repeat what everyone has said so far...thanks for bringing us up to speed. Your story is truly awful and I have to admit, I look at things like Laura's situation much differently now that I'm a daddy.

Sweet memories mentioned that she didn't know how a mother, an aunt or a sister can go through something like that. Let me tell you all, it's just as hard on a daddy.

I don't know you or Laura from Adam, but my eyes welled up just reading about it.