As part of this process, Jonah's medical team aggressively tries to remove excess fluid from his body with the ultimate goal of protecting his heart and lung function and allow time for the Fontan circulation to adjust. Fluid around Jonah's lungs can and potentially always can be a problem. This isn't true in every case but it is something the team takes very seriously. After surgery, Jonah's body begins shifting fluid, the diuresis process starts roughly 48 hours later and it slowly gets ramped up to push the limits on every organ. Jonah did not respond to these medications as quickly/effectively as they'd like so they took it to the next level and the next, etc. Finally, the floodgates opened and he began to dump the extra fluid. While Jonah was so waterlogged one of his nurses explained... "He's not eating because his liver and intestines are floating". As he continued to shed the retained fluids Jonah's electrolytes were depleted. Calcium. Potassium. Magnesium. Sodium. We began quickly to replace these both IV and orally. The intravenous route only bumped them up to get him to the next scheduled diuretic where he would lose them again making it a wash. We tried every trick in the book to get these oral meds to stay in his belly. Jonah put the clamp down anytime yogurt, applesauce and a spoon came near him. The push of a syringe wasn't any better because either way he was gagging & puking it up. This went on for too long yesterday and Jonah didn't meet his liquid oral intake for the second day. There we were...what felt like standing on a beach getting knocked down by wave after wave-just getting pummeled. We'd ask all day, every day-"is this normal?" The answer to that turned out to be Yes and No. Jonah's eyes were dark, hollow, black holes. His shoulders sharp, his spine and ribs prominent. He was dehydrated. Extremely dehydrated. Not dangerously though as his kidney function was still good. Mission accomplished!! He was utterly dried out. This is what they wanted for his heart but admitted it was too much for the rest of his body. Rob and I were totally defeated. Desperate. To look at Jonah like that scared us more than looking at him fresh out of the OR 3 times.
Step in---divine intervention. A veteran nurse we never met before came in to change Jonah's sheets after throwing up. She was quiet. We were crying. Then it seemed we both started talking at once. Before the hour was over we had Jonah started on IV fluids with most of his big electrolytes in it and another cut back in his diuretics.
Fast forward to today...Jonah's eaten 3 meals, kept it down, pooped twice, is narrowing the gap between his input and output, his chest tubes were pulled, and oxygen weaned. Literally a night and day difference.
This surgery definitely has our vote for being the most taxing, frustrating, exhausting, confusing, and intense surgery of all 3 repairs. We felt broken last night but we picked up the pieces today to hopefully take more steps forward than we do back.
Take a look at the before and after...
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