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:->Destiny:->




Welcome to Destiny's Web Page. Destiny was born on Aug.11,2002 in Dallas,Tx. She was born with a genetic disorder called Megacystic
Microcolon Intestinal Hypoperastalisis Syndrome. Which basically meant her digestive track did not function properly. There is a lack of the motility nerve cells from her esophagus all the way to her bottom. Her intestines where tiny with no movement at all. Her bladder wouldn't contract to release. At birth she had over a liter of fluid trapped in her bladder. The doctors didn't give much hope for her to live past 6 months of age.
At only five days old she went for her first surgury. They placed a central line in her chest to give her intravenous nutrion called TPN, she also received a g-tube, to try and give her feeds but ended up just using it to vent her stomach because she could not tolerate the feeds, and she also received a vessacostomy so her bladder could drain, and an ileostomy.
After research I knew what had to be done... Destiny needed a multiple organ transplant. There's very limited hospitals that have performed these transplants so we went with the top recommended... Children's Hospital of Pittsburgh. The doctors in the Dallas area did not feel comfortable with managing Dessy's care as an outpatient so at 8 weeks old we were transferred to Tx.Children's in Houston where we would continue our goal to make it to Pittsburgh,Pa. to be evaluated for transplant.
While in Houston Destiny's intestinal wall was ruptured during a study and immediate surgury was required.
In Nov.2002 we were transported to Pa. for evale. After 5 days there Dess was listed for a multivesiral transplant. We went back to Houston to wait.
In less than a month I was able to take my baby home for the first time.
She was already very jaundice from the damage to the liver the TPN causes. She did pretty good for about a month then went back and forth in and out of the hospital with GI bleeds and needing many transfusions.
In May 2003 the liver failure got too out of control and Tx. wanted us to be in Pittsburgh where her chances of survival were better. She was made a status one on the waiting list.
After a long wait.. On Aug.27,2003 we got the call that organs were available for her. Aug.28,2003 she received a stomach, small bowel, liver and pancreas transplant.
She has done fairly well with the transplant, no rejection at all until Sept 2004. She showed mild rejection on biopsy. She actually had a pretty bad case of graft vs. host which means there was a large amount of donor cells in her stream. With this there is a less likely chance of rejection. But she has always done things a bit different.
Destiny is a very unique and complex little lady though.
In March 2004 she had an achalasia of the esophagus, which means the muscle in the esophagus spasmed shut and had a very serious surgury in April to release that. That was a very hard and scary time. For months she was unable to eat and it took a long time for her to recoporate.
Then she has developed different antibodies that started attacking her platelets and red cells (Evan's Syndrome) which she needed chemo for that and it was resolved.
Right after that a clot in her leg that she received thinner shots for about 3-4 months.
Then she got a horrible virus that she will always have its just a matter of keeping it from rearing its ugly head again.
She also has IGA nephrosis (nephratic syndrome). It effects the kidney functions. She looses alot of protein in her and has to have replacement along with other medicines to treat that.
Her stoma output has been a battle since transplant and with the esophagil problems she requires lots of fluid to drink when she eats. So they wouldn't let her eat for along time. But just recently, mid Oct.04, she has been allowed again. Now she's a whole new baby. Very happy!! Eating is great for the quality of life.
On Sept.30,2004 she went for g-tube placement that required an open surgury because of her transplanted stomach. We want to attempt slow feeds to the bowel and get her off TPN again.
On Jan.27,2005 Destiny recieved her kidney. Which the kidney suffered some trauma and has what is called ATN (acute tubular necrosis) and is not functioning properly but is expected to regain full functions in time. There is still a high protein loss in her but we are hopeful that will correct as well.April 2005 Destiny's kidney kicked in and is doing great. She had developed another clot in her inferior venacava so we were forced to start thinner shots again and we all beleive that is what helped her kidney to begin functioning. She remained on the Lovenox for 10 months this time, we just recently in Jan.2006 stopped them and she is still doing well without those shots. Thankfully!!!
Nov.3,2005 I received a call from our Endocrinology Dr. and with several symptoms present she diagnosed Destiny with another gentic disorder called "Allgrove Syndrome".
She continues to be in good spirit through this all. She is a fighter and a wonderful blessing from above. She steals the hearts of everyone she meets. She is a mircle baby with a destiny!!!
This page has been created to keep everyone updated on how she is and what is going on in her life.

*God bless our donor's families* Without the families making the dicision to save a life in their time of grief, Destiny and many others would not have been given their second chance at life...
***BECOME AN ORGAN/TISSUE DONOR***

Journal

Monday, March 1, 2010 2:47 PM CST

Wow it has been along time since my last update on here. Destiny has been doing pretty well. We had a wonderful Christmas. 2010 hasnt started out to great, tho. She was admitted in January for RSV and currently inpatient for high output & fevers. She has had 2 scopes done since coming in on friday, the 1st one was inconclusive so rescoped today. Results should be back this evening. All cultures are negative so she is playing in the playroom right now.. Her favorite thing to do!!! She is feeling alot better and we hope & pray for the best results to come back and start the homeward bound process. Please say a prayer for her and my sisters. Older sister just lost her husband Feb 2nd, he passed suddenly at home due to intestinal problems. My younger sister was in a major car accident Feb.11 with lots of injuries. Still in the hospital with many surguries to come and a very long road to recovery. Our family has experienced alot lately & know that God will bring us peace thru these trying times. Thank you for your continued support:-)

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Hospital Information:

Patient Room: TEXAS HOME!!!

Children's Hospital of Pittsburgh
3705 5th Ave.
Pittsburgh,Pa 15213
412-692-5325

Links:

http://www.caringbridge.org/va/makenzie   Very special little lady
http://www.caringbridge.org/pa/louis   Aunt Chris loves you, Big Lou...
http://www.caringbridge.org/visit/kennethcantrell   meet Kenneth- Destiny loves Kenneth her


 
 

E-mail Author: cruelladelight@yahoo.com

 
 

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