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***CALEB JAMES RASBEARY*** 5-4-02 ~ 4-29-07
Welcome! Our son Caleb flew to heaven on April 29, 2007 while waiting for a second small bowel, liver, pancreas, stomach and kidney transplant. This page has been made for everyone to know our beautiful little angel.
CALEB'S LIFE STORY Hi my name is Caleb, and I was born on May 4th 2002 in Texas. I weighed 5lbs 4oz at only 32 weeks. I was born with a condition called Gastrochisis, where some of my intestines were on the outside of my tummy. The day I was born, we discovered that my intestines on the outside had twisted and died, leaving me with only 27 centimeters of small bowel. I was immediately given tpn and lipids for my nutrition. My surgeon told my mom and dad that because I was so short gut, I may be able to eat a hamburger by the time I turned 18 years old, and with that said, my journey began.
One month later the doctors connected my intestines and gave me a g-tube and a j-tube. After the connection I could not absorb anything, so I had an exploratory surgery in order to try and get things to start working. The surgery was not a big success except for the fact that my intestines had grown to be a whopping 54 centimeters. Everybody says that was a miracle. After that, my intestines were still not working well, so once again I had to have a 4th surgery and this time they had to remove 5 centimeters of my bowel, which left me with 49 centimeters. Finally, I was able to absorb 10cc/ hr threw my g-tube, but it still was not enough to grow.
Since I was the oldest and biggest baby in the preemie nursury, all the Doctors and nurses called me "The King of the Nursery". I finally was about to break out of there for the first time and go home for Christmas, but I started bleeding and had to go to the nicu for awhile. It was there that they started talking to my mom and dad about transplant. I then got to go back to the preemie nursery for Christmas and on December 29th, my mom, dad and I flew to Pittsburgh for an evaluation for a small bowel and liver transplant. One week later I was placed on the waiting list.
We then flew back home to Texas Children's Hospital and my mommy and daddy could finally take me home on January 17, 2003. I had fun at home, but I was only there for 4 days, because I started bleeding again. So back to the hospital we went. Well, on February 3, 2003, at 10:00pm we got the call that we had been waiting for, and we were flown to Children's Hospital of Pittsburgh. I finally went for surgery on February 4, 2003 at 10:00am on my 9th month birthday to receive my new small bowel, liver and pancreas. The surgery lasted 12hrs. The doctors said that my old organs were the worst that he had ever seen and because they had to give me so much blood, they were not able to close my belly. Since my belly was open, I had to be paralyzed for 10 days. I did have a hard time coming off the ventilator, but finally one month later, I was able to conquer that obsticale and get off the vent.< Finally, I was able to go to the floor in my own room. I was up there for 3 weeks and got to go to the hotel on April 8, 2003. We lived in the hotel for about 3 months and it was great seeing the world for really the first time in my whole life. My two favorite nurses Shelly and Rachel from Texas Children's Hospital and my Pawpaw and Nana, flew up to see me for my 1st birthday. I was so excited to see them. Unfortunately, I did have some liver rejection, but we got that under control with a lot of steroids. Then finally on July 5th we flew home to Texas to see my house again. After only being there a few hours, I got my first line infection, but at the time everyone thought it might be rejection. So there we were flying back to Pittsburgh. Everything was fine, so we flew back home for the second time. I then only got to stay home for about a month, because I started bleeding again. So we got flown back to Pittsburgh, where they found some ulcers in my intestines, which was caused from being on steroids. I managed to stay clear from Pittsburgh for about a year and half, but in Feb. of 2006 I had to have exploratory surgery because my belly was very distended and they found a blockage in my intestines. So when they went in for exploratory surgery they noticed that part of my bowel was very unhealthy looking. They did have to take out 40 centimeters of bowel and after the surgery they took biopsies on the outside of my bowel that did not look healthy. So when the pathology came back it showed I was having chronic rejection. Which they called it a rare phenomenon and that they haven't seen it happen to any of their patients since 2001. When they do scopes and biopsies from the inside of the bowel it shows no rejection. So they decided to re-list me for new organs. My mom says that I have been so strong through this big set back and I always seem so happy.
Unfortunately after a hard year of waiting for my new organs, I flew to heaven on April 29th 2007. So much has happened to me in my little life and I want to thank all my family, friends, and strangers who have been praying constantly for my health and happiness. I will never forget you all and I pray that you will never forget me. Love Always Caleb
Here are some of Caleb's transplant friends and links to their web sites.
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