^^Angel^^ Trenton L. - Quilt Finished in 2006

Born: February 15, 2005 - Passed: April 12, 2009

Illness: Alagille's Syndrome, Pulmonary Stenosis, Post-Liver Transplant, Immunosuppression (Trenton didn't pass because of his illnesses.  He passed after falling out of a second story window)

Trenton L.'s Story

Written by mom Crystal

Trenton was born on February 19, 2005.  He was a quick delivery with no complications.  He was very small (5# 6oz, 18 inches) and 4 weeks early.  After two days under the warming lights, we were sent home.  Before we left the hospital, a cardiologist came in to tell us that Trenton had a heart murmur caused by pulmonary stenosis.  He said that should grow with him, and shouldn't cause any problems in the future.

So we took our beautiful baby home.  The next morning, when we all crawled out of bed, I noticed that Trenton's eyes were VERY yellow.  I called the doctor's office, and they asked us to take Trenton in for lab work.  When the results came back it showed that his bilirubin was pretty high.  They told us to take him back in for labs the next day then come straight to the office, which we did.  When we got to the doctor's office, they put us in a room to talk to us.  Labs started slowly rolling in, and as they came in my heart continued to sink.  Finally the bilirubin results came back. Trenton had a something called hyperbilirubinemia, which is extremely high bilirubin.  They told us that they wanted him admitted to the NICU.  What we though was going to be a short stay turned into a whole month...

They ran tons of tests, and finally came up with the diagnosis of Biliary Atresia.  Less than 24 hours after they told us the diagnosis, they were taking him into surgery. They performed what's called a Gallbladder Kasai (attach the gall bladder right to the liver).  Trenton came through that with flying colors!  We waited for a long three weeks, and still didn't see any difference.  Finally Trenton made it back up to his birth weight (his weight had dropped to 4# 9oz), so they discharged him from the NICU. 

Three weeks after coming home (and 3 admissions in the meantime), the doctor's decided to perform another surgery, a Traditional Kasai, because the first was unsuccessful.  They removed his gallbladder, and attached a piece of his intestines to his liver.  Trenton came through this surgery with flying colors!

Four weeks later, and still no change, our GI doc decided to refer us to a Transplant specialist.  We were referred to the University of Michigan.  The doctor there told us that he didn't think that Trenton had Biliary Atresia, that he had Alagille's Syndrome.  After some tests, the doctor's beliefs were proved true. 

In October of 2005, Trenton was listed for a liver transplant.  He was on the list for a total of 29 days.  We got the call Thanksgiving night.  Trenton had his transplant on November 26, 2005.  At the time of the transplant, he was 9 months old, and only 12 pounds.  His skin was a horrible greenish yellow color, and he was miserable!  Trenton went through THIS surgery with flying colors! 

In December of 2005 Trenton was admitted for an infection of his Broviac line.  The doctor's decided that is was time to pull it out.  When they pulled it out, they did an echo of his heart.  That was when they found that the pulmonary stenosis that should have been growing with him, wasn't.

Cardiology at U of M was called in to consult.  The did a Heart cath in January, and on February 21, two days after Trenton's first birthday, they performed the fourth and hopefully last surgery, open heart surgery.  Trenton had only a few complications from that surgery, and is now doing great!  He is gaining weight, and as of this update, is at almost 17#! 

Written by Trenton's mom Cyrstal in March 2006