^i^ Caleb H.
North Carolina
12/22/09 - 4/10/17
Diagnosis - Pulmonary Atresia with Intact Ventricular Septum, recent heart transplant recipient.
THEME: Favorite Cartoon Characters (Mario, Mickey Mouse, Minnie Mouse, Goofy, Angry Birds, Minions, Smurfs, Alvin and the Chipmunks, Care Bears, Sponge Bob and Bugs Bunny) THESE ONLY!
Due Date: 2/1/17
Caleb's Story
We had no idea anything was wrong with Caleb until 16 hours after he was born. They told us that something was wrong with his heart. He was transferred to a larger hospital. His oxygen saturations had dropped into the low 50s. He wouldn't live through the night without intervention. The next day we met the doctors who would be caring for him. They told us that he had a heart condition called "Pulmonary Atresia with Intact Ventricular Septum and Tricuspid Stenosis". In short, he was functioning with half a heart. He stayed in the NICU for 3 months until his first open heart surgery where he had a PICU stay of 5 weeks. He was sent home with a feeding tube and long list of meds.
He did fairly well for the first few years of his life. In 2013 we moved back home to North Carolina and things started to change. The doctors were planning his 3rd stage repair surgery. They did multiple heart caths to determine when he would be able to move forward, but they all showed "sinusoids" … pressurized blood vessels which compete with the heart for blood flow. This made him inoperable. We changed hospitals 3 times and it had been determined that his health was starting to deteriorate. He was put on supplemental oxygen at home. He had 6 heart caths in 2 years, all with the same outcome. He was listed for transplant on March 17, 2014.
On June 16, 2016 we were admitted at Levine Children's Hospital for an IV med for heart failure. Caleb was bumped up to 1A on the list. The next day we found out that a heart was found. In fact, 3 offers came in, during the first 12 hours. His 825 day wait was finally coming to an end! On June 18th, he received a new heart. He recovered well and was released on July 1. He has been admitted once more since then with dangerously high potassium levels but everything is getting back on track. He is a miracle in every sense of the word and loves to make people laugh!
"Thank you so much!
This quilt is awesome. He is loving it. You guys are all so special. I can't say it enough."
