But the fun stopped there.
The surgery team came in late this morning to inform us that Dr. Starnes agrees with the cardiologists that plication of his diaphragm is necessary. He is scheduled for surgery tomorrow, mid-day.
They will access his diaphragm by making a new incision on his right side and separating his ribs. Then they will suture his diaphragm down so it no longer expands. I can't tell you how sad and angry Abe and I are over this.
Paresis of the diaphragm during open heart surgery is fairly common, but it's also avoidable if they are cautious of the phrenic nerve. At some point during his Fontan, his phrenic nerve was disturbed or damaged causing his diaphragm to expand in a state of shock or paresis. It might/maybe/possibly heal itself over time, but that isn't guaranteed. And until it does, it's crowding his lung. As you can imagine, that's a very dangerous scenario for a single ventricle kiddo.
Our little guy has been through so much. The suffering feels endless. We know this is necessary. We know this is temporary. We know we will get to take him home soon. We know we will see him running and playing again. But man, enough is enough. Blessed are the families that never have to see their child experience this type of pain.
Please continue to send love, prayers, positive energy and healing thoughts to Santiago.
