I wish your child the best of luck. His strength and pride in facing this make him a real role model for us...at least for me.
Please keep us posted. I'll keep him in my thoughts.
Fran - Italy
You have my deepest prayers for the health of your son.
Our thoughts and prayers go out to you and this young one. may his pain and suffering be eased. I hope that this complication ends soon and he can get back to healing.
God bless.
Hello,
That is a heart breaking story. I am sorry you and your family is going through this.
Pleural effusions can be trouble some problems. It is common for the saturation to drop in the setting of a large pleural effusion. Post operative effusions are common immediately after surgery and in the ensuing weeks. They usually do not persist for such a long time.
Pleural effusions caused by increased venous pressure (causing leaking into the lungs) is usually managed medically. There are invasives tests that can help determine if the cause is increased heart pressures like a swann ganz catheter. In all likelihood, this has already been done and is the reason they think it is from increased venous pressure.
I have not seen a case like this before -- but I also do not work with pediatric heart disease. Unfortuately I am also not familiar with your medical system. In the United States you can request a transfer to another hospital that has more resources -- you may already be at a place like this. If a second opinion is an option, consider finding a way for a second opinion.
If all else fails and it is the heart causing these problems, a heart transplant may be an option. Again, I am not sure that this would be necessary without knowing more about the condition of his heart.
I hope this helps. Please take care and post messages with follow up as you can. Thanks for posting.