Warrior Wednesday

Vincent, 3.5 mths old

HLHS

Our sweet boy, Vincent “Vinny” Jeremy Paolucci, just 3 months old and was born with Hypoplastic Left Heart Syndrome (HLHS), a rare and complex congenital heart defect where the left side of his heart did not develop properly. Most babies born with HLHS undergo the Norwood procedure within the first week or two of life. Because of complications, Vinny wasn’t able to have his Norwood surgery until he was nearly one month old, meaning he had to overcome even more obstacles before he could receive the lifesaving operation he needed. From the very beginning, his journey has been anything but typical. Since his surgery, our hospital journey has been filled with one challenge after another. Instead of recovering and going home, Vinny has remained hospitalized his entire life because of ongoing complications. He has struggled with recurrent fevers that doctors have not been able to find a cause for and has required extra oxygen because his heart and lungs have had a difficult time working together. As doctors prepared for his second heart surgery, they performed a heart catheterization to better understand how his heart was functioning. The catheterization showed that some areas still need attention, including narrowing in one of his pulmonary arteries, but it also gave the team important information to help plan the next stage of his care. After the heart catheterization, Vinny suddenly stopped breathing after leaving the cath lab. The medical team had to act immediately, performing CPR for about 1 minutes 30 seconds and given emergency medications to restart his heart. Thankfully, they were able to stabilize him. After this event, Vinny remained on a breathing machine. Doctors tried taking him off the ventilator on July 7, but within 30 minutes he wasn’t able to breathe well enough on his own and had to be reintubated. An MRI performed afterward revealed that Vinny had suffered a small stroke in the right side of his brain, in an area called the thalamus. This was devastating news for our family. One piece of good news was that doctors found no excess fluid around his brain, which was a huge relief as we recently found out he had cloud collection .They continue to monitor him closely and will watch for any long-term effects as he grows. On July 9, he was once again taken off the ventilator, giving us hope. Sadly, on July 11, he developed severe breathing problems, poor blood circulation, and signs that his body was in shock. He had to be placed back on the ventilator for a third time so his body could rest while doctors worked to stabilize him.