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Carter ended up having his surgery sooner than they had hoped because his tet spells were getting worse. It got to the point where we would hold our breath when he needed a diaper change or to be repositioned. Even the small things would spiral out of control quickly. We were counting down the days and hours until he could have his surgery.
I remember telling his surgeon that it was worse watching him have tet spells than it was waiting for him to come out of surgery. It seemed like multiple times a day we would have just about the whole unit in our room helping him out of one of his tet spells. When his surgery was finished, we felt a sigh of relief. We were glad his tet spells were over. We could finally enjoy our little boy again!
Unfortunately, his six month follow up echo showed that he would need another open heart surgery at 13 months old. Eventhough he appeared happy and healthy, his heart was still struggling.
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