Meet Dylan
My son Dylan was born on June 27, 2018 in Lafayette, La. He just turned 6 months old two days after Christmas. Just a few hours after Dylan was born, they took him to NICU for testing because they thought he had a heart murmur. A few hours later, we learned that he had truncus arteriousus type 2. We were shocked and heartbroken, because the whole pregnancy, we were told the baby looked good. Dylan was transported to Children’s Hospital New Orleans by helicopter the day after his birth. A few days after he was in NICU there, we were told he more than likely had 22q. They were waiting to see if he
had T cells, which he does. At 9 days old, Dylan had his first open heart surgery. Two months after his surgery, he had to have a stent put in his left pulmonary artery. A month after that, he had to have hernia surgery. Dylan also had a leaky valve, instead of having three flaps(leaflets), he had four. His amazing heart surgeon, Dr. Timothy Pettit, has never done a surgery with the valves like that before. He will need at least one more open heart surgery and another catheter surgery. We have met with Dylan’s immune dr, Dr. Paris, he said we don’t have to worry too much about Dylan getting sick. From his 22q, Dylan also has hypocalcemia. He sees a endocrine dr to monitor his calcium levels. He was on vitamin d, calcitrol, and calcium carbonate. As of now, he’s off the vitamin d, and lowered doses of both calcitrol and calcium carbonate. Dylan is also on lasix, digoxin, recently replaces with Epaned, and 1/4 aspirin. We were told because of him being under anesthesia so long at such a young age, he might be delayed maybe a month or two. We have 3 steps(early step intervention) working with him. He has a teacher coming every two weeks, as of now, he seems to be on track with his milestones. If he’s behind on any, it’s only by a few days if any. On one thing he does, the teacher said he is ahead, which is great news. Dylan’s cardiologist told us he can be a normal kid playing sports and everything.
Thanks for hearing Dylan’s story.