Hi guys, i am a Heart mom. My son was born with heart defect with Dextrocardia with complex heart defect, Heterotaxy of the asplenia, Inlet single ventricle, Malposed great arteries, Atrioventricular valve insufficiency and Nonclussive 6mm thrombus versus fibrin. We’ve been in and out of hospital for the last 3 years of his life. When he was born on July 2014 the third day they did an open heart surgery on him called the BT shunt after 5 months they rversed that. We we’re in the hospital for almost 12 months then we brought him home for 2 months and went back in the hospital 2015 for his 3rd heart surgery called GLENN procedure. Stayed there for another 5 months took him home before xmas of 2016 and ever since his been home with us, he developed a 48degree T5 scoliosis as well but this lil guy is very strong and active even with his brace on. He got sick Dec 15 2017 and when we did an Echo (EKG) his heart valve is leaking severely, cardiologist schedule an Open heart surgery again last friday ( Jan 5 2018) to fix his valve and do the FONTAN procedure, but he got an infection (strep pneumonia) so we are here at the hospital since last week Jan 4th, when we got admitted he had seizure right in front of the nurses, but thankfully when they did a CT scan and EEG everything is ok in his brain. I have a 4 year old daughter as well with Hypoglycemia and she is on strict diet, as her sugar goes down pretty quick if she too much sugar. We don’t have family here in las vegas that can actually help us take turns to stay at the hospital and its really hard for me to leave him alone. We exhausted our savings to get some lodging right next to the hospital and expenses we have along the way. My mom and mother in law was here to help out but my mom in law went back to philippines and my mom is going back to california for work as she is financially supporting me as well.
Thank you so much for all the support.
Jon ryan had 4 open heart surgery and this one will be his 5th. He also have scoliosis that needs to be infused (surgery in the back) but we are finishing first all his heart need then maybe we can do the surgery for his scoliosis. Jon ryan is the most sweetest boy and stubborn at same time but this boy is full of life, his always laughing and active even with his body brace on!!!!
Please pray for safe surgery!
Thank you so much for all the support and generosity.
- David White
- Kristine Hafner
- Yven Ofiana
- Nerisa Manguiat
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