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My sister has been away from her blog for a while. Normally I would never ask people the world over for a favor. But this is a special circumstance. I know some of you follow my niece’s journey. She is 12 now, and things are not going well. Worse yet, she is starting to understand things I guess I always hoped she wouldn’t have to. I am going to link my sister’s latest update. All I ask is that you please read it and send some positive vibes out to the universe on behalf of Angel, her sister and brother and my sister. We could use the support and I thank you.

Below the text is the link

We finally got to the source of Angels pain and fevers. Her native kidney is covered in cysts and is very infected. It would seem easy to want to just take the kidney out ,but as Dr C explained is not that simple. First off infection needs to be under control secondly it would be an extremely complicated surgery. Her native kidney was not exactly in her back area like usual but slightly more in the middle of her body. This is why it was so easily believed to be a stomach or bowel issue.
In addition to being in horrible pain and high fevers on and off she is feeling terrible emotionally. She is missing school which although she has made it to a few classes ,she was truly looking forward to school this year. She is feeling sad that her body doesn’t work properly, she is feeling sad that she doesn’t know if she will ever be able to have children and a family of her own, she is feeling sad that she doesn’t have her comfort zone and support from years of seeing her dialysis family three times a week, her Dad being gone and her life has just undergone so much change in the last few years.
Seeing my daughter crying in pain for as many days as I have is totally overwhelming and if it wasn’t for the support from my Dad and sisters and my children I would really be a basket case. I have been blessed with a few friends who check on us regularly and I am totally thankful for that.
Please keep Angel in your thoughts as she will be in the hospital for a while,the pain will continue for a while and honestly we have no idea how much this will affect her transplanted kidney and her overall health.
Tomorrow morning she goes in to have her stent in her new kidney replaced. I can only hope for her to feel better and know she is truly an amazing little girl who is a true inspiration

#teamangel

https://m.facebook.com/story.php?story_fbid=1753910121527194&substory_index=0&id=1742244136027126

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Back to the place she knows so well, and welcomed by those who are dedicated to help, but have become family. Tampa General Hospital, where everybody knows her name. It was a simple gesture, saying welcome back on the board in Angel’s room. To a casual observer it may not even be noticed. To me, as aunt of one of the most amazing people I know, that gesture was symbolic of the many years of love, heartache, triumph and hope that we have all shared in the amazing 12 years of Angel’s life.

Angel came into the world  at St. Joseph’s Women’s Hospital, but soon found a second home at Tampa General. She was born with Vater Syndrome, a relatively rare set of congenital anomalies requiring life saving and life preserving surgeries, medications, an amazing and dedicated set of physicians, ARNP’s, nurses, hospital employees and the super hero (thank you for the words my beautiful friend across the pond) mom whose dedication and love help Angel thrive in ways no one could have predicted.

Back in the hospital after only a few days home, I had time again to reflect on how lucky a chronically ill child is to have an envelope of love and dedication surround him or her in an environment that us foreign to most people.

After just a few minutes in the room, it was time for shift change. A nurse that had never met Angel came in. This is rare. Meanwhile a nurse from The IV  team came in put a new sonogram guided IV into her left arm because the one in her right arm was no longer useful. That nurse had cared for Angel in the ICU  many times before. Another nurse stopped by to sit on the bed, hug Angel a few times, talk with the new nurse and reminisce. Even though she
had cared for Angel only a few days before she said, “I remember when you used to make me call you Princess Fiona.”

I had forgotten Angel’s Shrek period, but it did remind me of the day that Angel was dressed in a beautiful dress for her hospital wedding to Diego, a cartoon character she loved so well. 

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So then began the trip down memory lane. Remember when Angel had the sign on her hospital door saying that all who enter must put money in her bank? Remember when we used to spend every Saturday snuggled on the big blue chair watching movies till we fell asleep?  Remember when Angel would say, “be right back,” and walk to the other side of her crib to pretend she was going to the potty?”

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How about all the Halloween parades and the Christmas parties? Or what about last month when the cashier in the cafeteria told Angel she was sorry they didn’t have donuts anymore? Or the time we sat for hours watching her sleep after the takedown of her colostomy or when she sat in her doorway crying, “water” when she was on fluid restrictions and none of the nurses wanted to walk by her room?

Most people can go their whole lives not entering a hospital. Some go occasionally and don’t give it much thought. For some, hospital is a home with extended family who come to know and love each other, know spouses, children, uncles, aunts, cousins and grandparents. For those people, I hope they have a place to go to like TGH. A place where doctors and nurses stay, and care, and keep giving.

“Be glad there’s one place in the world
Where everybody knows your name,
And they’re always glad you came;
You want to go where people know,
People are all the same;
You want to go where everybody knows your name.”

source: http://www.lyricsondemand.com/tvthemes/cheerslyrics.html

Welcome back, welcome back, welcome back.

Love you, Angel.

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My daughter received a kidney transplant in 12/2015. She is now 12 years old and she was on dialysis for 8 years prior to receiving her transplant. She has other health issues, besides her kidney disease and it was a combination of reasons that she needed to wait that many years for a transplant. We […]

via BK Virus and Kidney Transplants — Have I told you about the time?

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I have been wanting to write part two on “the Mask” but nothing I share could compare. Please read about my beloved niece and send us some
good juju.

Have I told you about the time?

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