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Old Feb 3, 2008, 03:25 PM
Kadensfamily Kadensfamily is offline
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Kadens story - PFIC

Kaden was born March 7th, 2005 weighing in at 7 lbs. 14 oz and looking healthy as can be. When he was 2 1/2 months old, his eyes started turning yellow, called the ped and she said if there were no other symptoms, let's wait 2 weeks until his 3 month checkup. When we walked in the door, she knew instantly that something was wrong. So we had labs and an ultrasound right then and a couple of hours later, we were admitted into Children's Hospital for our first of many stays. After a year of many tests, lab draws, and biopsies we were given a diagnosis of a very rare liver disease called Progressive Familial Intrehepatic Cholestasis. When he was about 10 months old, they had placed a NG tube into his nose for feedings due to the fact that he could not gain weight - he was only 12 1/2 pounds at the age of 1. After his first birthday they surgically put in a G-tube for feeding. August of 2006, we started his testing to be listed for a liver transplant. He was still very small, he was not strong enough to walk let alone stand, and with his disease, one of the main side effects was itching. He itched 24 hours a day. He had very hard, rough skin all over from the itching and his face and hands always had scabs. It was very difficult for him to sleep due to the itching. He could not relax and when he started to relax, he would start itching again and then he would get agitated and that would make him sweat which made the bile come out of his skin and itch more. Kaden was registered live on November 17th with UNOS (United Network of Organ Sharing) and we received the phone call on Wednesday, December 13th at 8:30 am that they had an offer for a liver. We accepted the offer and we went to the hopsital at 11:00am and they took him into surgery at 11:00pm. Kaden's transplant was a completed success. His surgery only lasted 8 hours and 7 hours after surgery, he was breathing on his own. They took him off of the ventilator and a couple of hours after that he was trying to sit up and signing that he wanted to eat. For being 21 months old, the team of doctors were amazed at his recovery. They had never seen a toddler come out of surgery this soon doing so well. The day after surgery, he was sitting up in the ICU eating cheese pizza and chocolate pudding. We have only had 1 set back since then but it was not the liver, it was a virus that he had caught. Other than that, Kaden has gone from doing nothing and being miserable all the time, to a very healthy almost 3 year old little man. He is running now and talking and climbing and playing like a normal toddler should. We want to thank the donor family from the bottom of our hearts. Without their precious little angel, we would not have our precious little angel with us. Kaden has his own Guardian Angel and we will never forget the life lost and the gift that was given to Kaden.
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