Wednesday, December 1, 2010

Update on Emily

Yesterday, we got a full assessment on Emily.

Her survival depends upon a transplant. Once she is six weeks old she will registered with an organization similar to UNOS.  To become a candidate for transplant she will have to 20 plus lbs or so, so surgery is in the future. There has been some discussion of using Boston Children Intestine and Multivisceral Transplant Program.

In essence Emily has severe short bowel syndrome. She lost all of her bowels, with the exception of 9cm of her small intestines and small portion of her large intestine (sigmoid colon).

The majors issues over the next two years or so are nutrition and infection. It is a high wire act. She will be in NICU for 6-8 months, maybe less maybe more. It will be along stretch. Say some prayers for Emily and family

11 comments:

  1. What a beautiful baby Emily is... :) .... my prayers are with all of you to give her strength and courage... xo! Hug, Kerstin and Lena (Vancouver, B.C. Canada)

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  2. Good luck and you all are in our prayers..

    Wayne POP-POP to Debbianne IS S-F since May of 09

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  3. I'm so glad she made it through the initial surgery! May her good luck and strength continue!!!

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  4. My cousin's son has Hirschsprung's Disease. He currently has an iliostomy. He has very little bowel function. They've been to Boston a few times. Though my cousin isn't proactive in his care( a whole 'nother story), he's gotten excellent care in Boston.

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  5. I'm glad she's made it through this first stage. I live in western Massachusetts and have taken my daughter to Boston Childrens on several occasions. I hope she does well. NYC is doing a new transplant program for kidneys. It sounds a little ghoulish - but they send a second transplant ambulance on certain calls with a staff who stay in the background and talk with the family if appropriate.

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  6. She is on the top of my prayer list! Your family has had a heaping helping of things to pray about hasn't it Mr. Fennel? You're a strong man and an incredible father and grandfather and I'm proud to call you my good friend!

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  7. Prayers are being said from Vermont to Texas for Emily.
    God Bless you all love Gail

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  8. "Poppy" thank you so much for the update, I follow your blogs daily. I have been praying for little Emily, she is a strong little girl and a fighter. I wish only the best outcome for her, she has made it through step one, the initial surgery.... now on to getting her stronger and stronger for step two.... thoughts, love and prayers to you and your family. Kellie Ghering

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  9. I am so sorry your family is going through this! I have a daughter with CDKL5, so I understand the emotional rollercoaster ride of life with this disorder. I cannot imaging how your hearts must hurt with the challenges Emily is now facing. All of you will be in my prayers. Ed, you have been such an encouragement to me, and I know God will bless you for the wonderful source of strength you are to your family.

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  10. My prayers are with you. Wishing Emily the best. And voting for Haley on the Pepsi Refresh, right now CDKL5 50K is #8.

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  11. Poppy and Haley checking on the functioning of the comment section.

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