Children's hospital in Denver suggested that the Glenwood neonatologist run an ammonia level. The test came back a dangerous 340 and he was airlifted to Denver. By Monday morning Justin awoke from his coma and he was diagnosed with ASA.
As he grew there were several hospitalizations and he begain having seizures.
In February 2000 we met with the liver transplant team at The Children's Hospital of Denver and Justin was listed stat three (lowest priority level) on the liver transplant list. In October 2001 he was elevated to status one because of his recurrent hyperammonias. When a three year old girl from Connecticut suffered an unexpected head trauma on or about January 21 her
family decided that their tragedy should become a group of miracles for other children. Justin received her liver on January 22..
Justin spent most of the three months following his transplant in the hospital. He had three rejection episodes, a bout of dangerously high potassium (which later in the year became too low) and he had to have a second major surgery to open a bile duct that had become obstructed because he had prematurely passed the stent holding it open.
In May we stopped his phenobarbital (which some believed was contributing to the rejection episodes because it was making him metabolize his immunosuppression too fast and making his cyclosporine and then prograf levels erratic). And, we added Rapamune to his regimen (the powerful yet different mechanism of this newer immunosuppression agent is just what he needed). He has been rejection free ever since and with his metabolic problems alleviated.
He was hospital free from May to September. In September, he came down with a virus and spent a week in the hospital but his liver numbers stayed good. Between September and December he got sick a few times but his numbers stayed great. Then on December 23 he became dehydrated and was hospitalized. He was in the hospital December 23, 24th and Christmas Day! However, his numbers stayed great (other than a temporary spike in his Alk Phos possibly related to Bactrim).
His EBV PCR is still zero (boy am I jinxing that. . . I know he can't hide from EBV forever - especially since we're told his donor was EBV+). In February 2002 he spent a day and a half in the hospital because he came down with influenza A. With the fever he got from the flu, his seizure disorder returned. Later in 2002, Justin went on Keppra to control his seizure disorder and has gone nearly 3 years without another seizure episode.
Justin�s last hospitalization was April 2003 for an intestinal bug and rejection scare. He hasn�t had an overnight visit to the hospital since (over 2 years!). In June 2004, his dr was able to stave off a rejection hospitalization by increasing his Prograf intake. Apparently, our growing boy had outgrown his Prograf levels. Justin is still on a very small dose of Prednisone to help with his immunosuppression; however, his dr is weaning him off of it and Justin should be down to just Prograf and Keppra for his daily meds soon. He�ll even tell you that they are his �happy liver� meds.
2004 was quite a milestone in that Justin started eating lots of different foods and lots of them! In October, we discontinued the use of his g-tube and he took his meds mixed in his daily supplemental formula. Since March 2005, Justin has been swallowing his meds orally and the g-tube was finally removed on May 2, 2005. He still takes 2 cans of Pedisure per day to help supplement his calories but he eats a wide variety of foods including: pizza, tacos, salsa and chips, spaghetti, BBQ ribs ,blueberries (lots of berries), lo mein noodles, waffles, yogurt, ice cream, and much, much more.
Justin has come a long way from when he was 5 days old laying in a coma in the hospital - dying from a mysterious illness. Now he is an active 6 yr old who is headed into first grade in the fall. Justin made such huge strides in his speech development over the summer of 2004, that he started kindergarten on schedule at 5 years of age. In the beginning, he had a full-time aid and went 2.5 days per week. He and I relocated to Denver in Nov. 2004 and were fortunate to get Justin in a wonderful school. He attended kindergarten five days a week for half days and only had an aide for literacy and math as he had made significant improvements in just a few months of kindergarten. In addition, he had one-on-one speech therapy 4 times a week at the school for 30 minutes, plus saw a private speech therapist for another hour a week. For a kid that was slow to talk, now we can�t get him to shut up! ? The tremors that are a side effect of the Prograf make writing a challenge for Justin but he is improving. His school had him fitted for an adaptive wrist weight and he used a slant board. He is now working with a occupational therapist to assist with his motor planning and fine motor skills. Justin loves playing soccer and kickball with the kids at his school-run daycare. And he started swimming lessons this summer. Due to all the physical therapy he had previously gotten at the pool, he is in the more advanced section of his swimming class. He loves the water slide at the rec center and had to swim � the length of the adult lap pool to get clearance to go down the water slide. I think we may have a future swimmer/diver on our hands, because Justin just loves the water! It is so wonderful seeing his personality blossom now that his health isn�t such a struggle
Birthday: March 23, 1999 Home: Denver, Colorado
Age at Diagnosis: 5 days Siblings: None
Other Diagnoses: Liver Transplant
Liver Status: Transplanted 1/22/01
