Justin W. - Quilt Finished in 2006
Born: April 12, 1988
Illness: Congenital Heart Defects
A Thank you from Justin's Family!
Written May 25, 2006
We got the quilt yesterday. It is absolutely beautiful and Justin really liked looking at where everyone came from. Thank you so much,
Lyn and Justin
Justin W.'s Story
written by mom Lyn
Justin was born April 12th 1988 a beautiful 5 pound 11 oz little boy. The very next day he turned blue while feeding and a few hours later we were told he had complex congenital heart defects (TGA,VSD, pulmonary stenosis/atresia). He would need at least 2 open heart surgeries to survive, we were also given the option of "compassionate care" which was just ot take him home and keep him comfortable. That was not an option. Justin had his 1st open heart srgery at 10 days, after getting of the vent and being able to feed, he had projectile vomiting and was diagnosed with pyloric stenosis and had surgery to repair that at 17 days old. Justin came home for the first time when he was 5 weeks old.
When Justin was 18 months old he had his "repair", a Rastelli, he was home in one week, but soon developed complications and was in and out of CHOP for the next 6 weeks, with fluid problems, croup and RSV. We almost lost him a few times.
Justin did great from the time he was 2 until he was 10. He played baseball, soccer, basketball loved to swim and was a Cub Scout. Life was good. Then in December he went for his routine cardiology appointment and they found his pulmonary artery was blocked with scar tissue and calcification. They scheduled a cath and the results were so bad he needed open heart surgery to replace a section of his pulmonary artery the next day, he also got a pacemaker.
Justin bounced back quickly and was playing baseball that March, he also graduated to Boy Scouts. The next year he got a strep infection in his heart and needed 6 weeks of IV antibiotics. When he was in the hospital that time there were no PS games to play because someone stole all the games off the children's heart floor, so he collected all the games his friends out grew and took 32 games to DuPont.
When he was 12 his pulmonary artery was narrow again and this time they were able to balloon it open in the cath Lab and use 2 stents instead of another heart surgery. The longer they could put off surgery the better to lessen the chances of him outgrowing the conduit (tube) they would use to replace the part of his pulmonary artery. He continued to lead a really active life.
When he was 13 Justin began working on the rank of Eagle Scout, his community service project was to make hug pillows for other kids having heart surgery. It helps with the pain to hug a pillow when you have to cough or laugh and the regular bed pillows were just too big for the kids. They were such a success he still continues to make them, and earned Eagle at 14.
The next couple years he had a few more caths to try to open his pulmonary artery, but was really starting to be tired a lot. In July 2004 his pacemaker broke and he needed another surgery to remove it, luckily his rhythm was ok and he has been able to do well without one, but as soon as he starts having problems he will have to have another one put in.
In May 2005 he had the conduit that is part of his pulmonary artery replaced and also got a pulmonary valve for the first time. He has been feeling much better. He will need his conduit and valve replaced surgically for the rest of his life, until the doctors can come up with a better material, which hopefully will be in a few years, since every time he has another heart surgery it is more dangerous because of all the scar tissue that builds up.
Justin is a very caring young man with a lot of empathy for the younger kids with CHD. He tries to help answer any questions they or their parents might have about growing up with CHD and dealing with surgery. We are very proud of him.
Written by Justin's mom Lyn in November 2005
