Had his 4 open heart surgery in February during cny. Yes CNY again. What are the odds right?
The stay in the hospital was longer than before. And more complications arise after the surgery. One of his diaphragm paralysed and have to go thru a plication surgery. His heart swing from extreme low to extreme high.
Every brand new day I pray that things will get better. I don’t get it why it didn’t.
We have accepted that Noah has PVS.
- Pulmonary vein stenosis is a rare condition in which the veins that carry oxygen-rich blood from the lungs back to the heart are narrowed. This is a different condition than pulmonary (valve) stenosis (PVS, PS) and peripheral pulmonary stenosis.
- Pulmonary vein stenosis can occur in several forms. Many children have what is called intraluminal pulmonary vein stenosis, meaning that abnormal growth in connective tissue cells causes the walls in the pulmonary veins to become too thick.
- It is usually a progressive condition, meaning its severity and symptoms increase over time.
- Sometimes, pulmonary vein stenosis can occur as a complication of another heart or lung problem.
- The exact cause of pulmonary vein stenosis is not known.
PVS is actually an incurable disease. It really took me a long while to accept this fact. But I’ve quite past the phase where I grieve because nothing can change fact. I can’t possibly be more positive. People who met us probably can’t tell what we are facing.
We are not giving up. Boston children’s hospital have a specialist team that deal with PVS. They have a clinical drug trial that might the condition. We have approached them and waiting to see if Noah is a suitable candidate. We are also ready to let him go thru another surgery if needed.
And if there is one definite way to help, it’s a double heart and lung transplant. But do you all know Singapore doesn’t have heart and lung transplants for kids? It’s so sad because there are many kids who died from Congenital heart defects and the only way to save them is a transplant.
Maybe because we live in a society that discussing about organs donation is a taboo. But how many people actually know the importance of having this problem around?
I really hope the voices of these families can be heart. Heart babies deserves a chance to a new lease of life….
Anyway the good news is that Noah is finally hitting his Milestone. He is crawling, trying to pull himself up to stand and he is starting to get more talkative. Yes 17 month is really late for a child but what matter most is I lived to see this moment that I’ve waited for so long.
All we needed now is miracle… And anything that can be done to keep Noah going. Anything.
