Ok, for the sake of those who only check this blog..
Jack spent three weeks at Primary's during our last stay. They did a "Thoracic Ligation" and a "Pleurodesis" while we were there which is where they went in through his side, clamped off a bunch of his lymphatic system to help prevent leakage, and then they scraped the inside of his chest wall so the lung would heal to it, thus eliminating any cavity for fluid to accumulate.
After that surgery, Jack's diaphragm was paralyzed on the right side. So, six days later, they went BACK in to pin down his diaphragm. That was successful, and 5 days after that, we went home.
I'm a crazy, psycho worrier ANYWAY, so everyday I wake up and wonder if his eyes are puffy from sleeping on his face, or if he's symptomatic again. Though he is still under weight (always has been, since birth..) he is doing really well, and has a LOT more energy than ever. He can last much longer while playing, or swimming, or running, than ever before. It's wonderful.
He is on Lasix 3X, Aldactone 3X and aspirin 1X, daily. He does great with his med's. Sometimes he asks for them.
This has been a remarkable journey- one that we never expected. And I have more respect and admiration for Jack than I thought could be possible. He was SO strong, and was SO great in the hospital. Even the times that we all were about to lose our minds...Jack still managed to maintain cooperation while there. I'm so happy for him.
Though this is post Fontan, I hope to keep this blog updated for those who want to know about "after" the surgeries. How is life different? How is the child better? Do they have limits?
There are all questions I had, and now I can be one of the people to answer them..