|
Justin Wyatt 
Hi!!! We are setting this up so that people can know that
I'm a kid with a bad heart.
When I go to a new child w/ congenital heart defects site, I like be able to see right away what CHD they have, it FINALLY occured to me that maybe people would like to know what Justin's were too and a little of the background history, SOOO...
Justin was born 4/12/88, when he was one day old, they took him to the nursery to check him and it was a while before they came back, they said he turned blue while feeding so they wanted to do some tests, It was one of the worst days of my life. Justin was DXd w/ Transposition of the great vessels (aorta and pulmonary artery were switched)ventricular septal defects (holes in the wall between his ventricle) pulmonary stenosis /atresia (his pulmonary artery was so narrow blood could not get out of his right ventricle)and a few minor things. I was told he needed to be transferred to either CHOP or st Chris and would need heart surgery.I knew of Dr.Norwood at CHOP so had Justin transferred there. the short version is because of his pulmonary stenosis and where it was located, Justin was not a canidate for the switch so would need to have a BT shunt at 10 days,this would help him until he was big enough for the big surgery, when he started feeding after he got off the vent he had projectile vomitting so at 17 days old he had surgery for pyloric stenosis. when he was 18 months old he had a repair called the Rastelli. part of the repair included having a conduit (tube) go from his right ventricle to his pulmonary artery, normally the conduit would be out grown and need replaced all thru the childs life, Justin was lucky because Dr. Norwood did a modified version, using Justin's own heart tissue and part of his pericardium (the sack around the heart) in hopes the conduit would grow w/ Justin so he could avoid numerous surgeries, he also didn't get a pulmonary valve so he wouldn't keep needing that replaced as he was growing. When Justin was 10 he had a surgery to cut out a blocked part of his conduit, he also got a pacemaker.
when he was 11, he got bacterial endocarditis (an infection in his heart) that required a pic line and 6 weeks of IV antibiotics.
for the next few years he had a few caths and stents, to keep opening his conduit,that would get blocked w/ scar tissue and calcification. Which brings us to where this page was started.
Justin's banner made with love by
THE HEROES BANNER SITE
Please, Visit my caringbridge brothers and sisters. I always wanted some, now I have tons!!!
Kylies Page
Jordans Page
Rebecca Lynns Page
Serenas Page
MARTY LYONS FOUNDATION The MLF has granted me my wish to go to Disney with my parents. I plan on going as SOON as I recover enough from surgery to go on the "TOWER OF TERROR". I wonder if they let you skateboard in the park?
GIVE KIDS THE WORLD
This is the cool place we are going to stay when I go to Disney-
Do you think if we put hats and t-shirts on Comet and Zero anyone will notice!?
TUMBLEWEED FOUNDATION I am a featured child this month on Tumbleweeds! Check them out and share your good thoughts and prayers with other kids like me that need some extra blessing.
Journal
Sunday, September 16, 2007 10:25 PM CDT Please donate to Justin's goal for Heartstrides walk for CHD, Awareness, support and research his page is www.heartstrides.kintera.org/mybadheart
Thank you.Hopefully someday research will make it possible for Justin next valve/conduit replacement to be done with one that could last forever as well as much needed CHD research to help all the kids and adults with CHD.
I also will but a clickable link in the bottom of the page, Thanks Lyn
###########################
Justin is doing really well. I'm sorry for the lack of updates, but honestly sometimes I drive me nuts, I'm almost afraid to type or say things are going well, too many times it has come back to bite me. Justin had his 6 week postop check up a couple weeks ago and everything in his heart looked good for Justin. The main concern was the conduit and that looks fine so that was a relief. Justin once again amazed everyone and got complete movement of his arm back before that appt, so doesn't need pt or ot, which has him pretty happy. AND he doesn'thave to go back to his adult CHD Dr. for a year. We are going to try and schedual his appt w/his pc so it works that he sees him 6 months after Dr.Webb so he'll be checked every 6 months for a few years at least. Last week he started school again, I can't believe he is a Sophmore.He is full time but the way his scheduled worked out with 2 classes that are 1 night each week he has alot of time off. That works out perfectly since he still gets a little tired if he does alot. He also has worked a couple shows doing load outs. The first one he was surprised at how weak he was and out of shape but last night he felt alot better. Everything just takes time after having the 2 major surgeries in June, but all in all I am thrilled once again at how well he has done.
We will be doing a walk at Sesame Place on Sept 30th that I'm pretty excited about. This walk is for CHD and will benefit www.tchin.org which is one of the very places I was able to meet other families w/ kids with CHD. Justin was born in 88, up until there were computers, then online groups w were so alone and really felt like we were so alone, Justin was in the hospital over 6 months totla in his first 2 years of life, but many of the kids we got close to became Angels so it was so nice to find kids around Justin's age when we found out about TCHIN. The other group that is part of the walk is the Children's Heart Foundation http://childrensheartfoundation.org/ which is another Org that is very important to me, first they provide one of the best books about CHD to any family for free, but more importantly to me their only mission is to raise much needed funding for CHD research. Some of the research they are helping right now is to grow valves and conduits out of the kids(oops adults Justin IS 19 lol)own blood or other cells in hopes that would last forever. Since Justin has already had 5 open heart surgeries and the pacemaker removal AND sternal infection surgery,it would be so wonderful IF when his current valve and conduit needs replaced (hopefully at least a decade away)it could be w/ a tissue engineered conduit/valve which in theory COULD be the last surgery he would need.
I am very bad at asking for donations so IF you would like to donate to our walk PLEASE email me at glwyatt@gmail.com and I will send you the link to Justin or my donation page. Any amount would really help
I'll sign off now but to learn more about why this is so important you can read below.
Thanks again for checking on Justin and always for the prayers, keep them going please.Love Lyn, Don Justin Comet and Zero
************************************8
For those that aren't aware just how much this money is needed here is a little info about CHD and funding. this is from CHF
CHDs are America's number one birth defect, affecting nearly one out of every 100 births, or 40,000 babies a year.
CHDs are responsible for one third of all birth defect related deaths, making CHD the number one cause of birth defect related deaths.
More than 50 percent of all children born with CHD will require a least one invasive surgery in their lifetime. Twenty percent of these children will not survive past their first year of life!
CHD research is grossly under funded. Pediatric cancer research is five times higher than CHD research although twice as many children die from CHD each year in the United States than from all forms of childhood cancer combined.
now more about funding
for every dollar provided by the National Institute of Health, only one penny is allocated toward pediatric research. This means that only a fraction of that one penny will be directed towards CHD research
I didn't take the AHA info off the CHF page, because they are being a little generous according to the last Annual reports from the AHA many people think the AHA funds alot of CHD research, but sadly that is not true. Out of their entire budget less than 25 cents from each dollor raised goes to research (it goes down each year I can find the report)and of THAT 258oes to "pediatric research"
in 2005 23.4 went to all research and I have a paper that says they spent 140 million on cardivascular research 11.7 went to Pediatric research) and last year it was 21.4. here's the 2006 PDF http://www.americanheart.org/downloadable/heart/1165958761497AHA AR 2006_FINAL.pdf
NOW of that 21.4hat goes to ALL research the last number I was able to get was 8f the research goes to pediatric research.(it used to be 10BUT even that is misleading since things they "count' as "pediatric"research if you press for an answer, is childhood obesity,excercise ect
So it works out that for each dollar raised for the AHA about 1 penny goes to CHD.
Read Journal History
Hospital Information: CHOP
home address 117 Columbia Ave
Stratford, NJ 08084
Links: http://www.heartstrides.kintera.org/mybadheart Justin's walk for CHD page
http://tchin.org/portraits/justin-2.htm Justin's story/CHD info and support group
http://www.kristineryan.com/ Wondeful Photographer in South Jersey
|
|
