Tuesday, February 19, 2008

Joshua’s Story

On May 26, 1999 a beautiful, baby boy was brought into this world. Like most HLHS babies, Josh looked completely normal weighing 6 pounds and 7 ounces. Josh was diagnosed with HLHS two months before birth at a routine ultrasound. After diagnosis, Josh’s mom was urged to abort the pregnancy. This was an unthinkable thing to do and the option was quickly thrown out. We were extremely thankful to find out about Josh’s CHD before his birth. Many hours were spent researching and connecting with other families that had been through what we were getting ready to go through. Upon delivery, Josh was flown to Kosair Children's Hospital in Louisville, KY. Two days after birth, Josh underwent a very long 22-hour Norwood procedure. The procedure was so long because too small of a shunt was put in the first time, and the surgery was pretty much performed twice. The second time a larger shunt was put in. After Josh got home from the Norwood, he was taken to the ER three times due to high heart rates. Finally, at about 3 months old, Josh was diagnosed with WPW Syndrome, and underwent a radio frequency catheter ablation surgery to destroy the extra pathway. On October 11, 1999, Josh had the Glenn surgery. He got out fairly quickly, but was readmitted for two weeks because he developed a staff infection. On September 5, 2001, Josh had is Fontan surgery. Everything went smoothly, and Josh was back home in less than 2 weeks. Since Josh’s Fontan he has not been admitted to the hospital except for the heart cath. he had on March 17, 2006. The cath. went absolutely wonderful! The only thing Josh’s cardiologist had to be done was balloon the stent in his pulmonary artery due to narrowing. Josh’s O2 sats were in the 97-99% range. Josh had an EKG, echo, and X-rays on March 1, 2007. Everything looked great and his O2 sats were 93%. Josh has had multiple cases of bronchitis and pneumonia, but all in all he has been very healthy for living with half a heart! The family gives all the glory to God and continuously praises Him for his grace and mercy!

Josh’s full diagnosis: HLHS, TGA, Ebstein’s Anomaly, WPW Syndrome

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