Recovery- Day 5

We had another restful night! Which is very rare in the hospital. We slept from 10:30pm-3:50am, then it was time for meds and vitals. Santi was back in dreamland by 4:30am. Only to be awakened for an X-ray at 6am. He dozed off again until 7:15am when they came in for a blood draw. The peripheral IV in his hand was removed overnight. I'm not sure if they'll put in another, or just stick with blood draws. 

The not-so-good news is that Santi is still having a lot of fluid draining from his chest tube. It should have slowed down by now. They believe this is due to excess fat in his diet. Per Fontan protocol, he's been on a low fat diet (no more than 25g per day) since surgery. Thursday to Sunday all he had was his fluid restricted servings of water, goats milk and Orgain (an organic supplemental shake).  He regained a bit of his appetite on Sunday and ate plain noodles, peas and carrots. So I don't know where excess fat would be coming from. Anyways...as of this morning he's on a "clear liquid and fruit only diet" to see if it helps reduce the fluid output. Ugh. Do-able, but no fun. 

In the months leading up to the Fontan, our goal was to get Santi to gain weight. He snacked on things like cashews and dried coconut. We discovered Orgain, a high calorie, organic, supplemental shake that he absolutely loves. So now we have to shift to the complete opposite direction, denying him some of his favorite foods. When he comes home he will have to follow a strict, low fat diet for a few months, which shouldn't be too challenging.  As a vegetarian, his diet is inherently low fat. But for the next few days it's strictly clear liquids and fruit. 

He will also be taken in for a special X-ray sometime today. They believe his diaphragm might be paralyzed. Which  is not uncommon following heart surgery.  Looking at the X-ray below, you can see that his diaphragm comes up substantially higher on the left side of the photo (right side of his body). You can also see many of this battle wounds. The drainage tube. The curly q's are alloy coils from closing "collaterals" or rogue vessels during past Cardic caths. You can see the permanent metal wires that hold his sternum together. On the outside, he's a typical toddler, all soft skin and squishy sweetness but the X-ray shows a different story. This kid has known more pain than most adults ever will. What a warrior.