As the Fontan surgery approaches, I've been struggling a bit more with what it takes to raise a CHD child. When we first heard James' diagnosis, we decided we'd give him the best life we could and make sure he was happy, and that would be enough. No matter what his future held, I made peace with the uncertainty by focusing on giving him happiness and love to make it all worthwhile. It's a promise that I find myself breaking...
We knew we couldn't predict what complications he might encounter, and while he's done wonderfully in most areas, the feeding is a serious issue. As long as he refuses to eat, and throws up what little we do get in him, we have to continue the feeding tube. He hates the tube, and keeps throwing up violently enough that it pushes the tube out. He vomits daily, sometimes more, and the tube has had to be replaced almost daily as well because of how often it comes out. We gave him more frequent and longer breaks as the vomiting accelerated, but now his doctors have given me a stern reminder that his low weight will negatively impact the surgery. Pick up the pace, they say.
He needs to gain, and in order to gain he needs to eat.
Yet forcing him to eat makes him cry. Throwing up makes him cry. Placing the ng tube makes him cry. Going to the doctor for frequent checkups makes him cry. Something hurts, and he can't tell us what or why, and no tests or dietary changes have brought us any answers, and so on we go for the remaining weeks pumping him full of formula and watching him scream and sob as his body tosses it back out again.
I wish I could just make him happy and let him enjoy his days, but instead I'm pushing him toward things that make him miserable.
Please please please let's hope that the surgery gives him a boost in energy and he starts feeling hungry on his own.
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