Hi everyone,

First of all, the cath last night went well. A lot of good news came out of it. His Fontan pressures measured at 16 (under 18 is good) which was a big concern with his Glenn pressures being higher than normal originally heading into surgery last week.

There were unknowns going into the cath about fenestration that was put in during surgery already closing and how. If it had been due to clotting, there would be a higher risk of a stroke.

The fenestration was closed, but just from normal bodily function of closing it, not due to a blood clot. A stent was put in to keep it open. While the stent settles in Paxton is back on hepperin to prevent excess clotting. Anatomically, everything looks good.

Now the bad news. Drainage is still high out of his chest tubes, around 1.6 liters of fluid in the previous 24 hours. That includes the time he was in the cath lab, so it would be expected to be elevated a short time after that. He's also still not eating a lot. A serving each of veggie straws and barbeque chips were his diet today. This is still normal when someone has chest tubes in, which of course can't come out until the draining slows down. It's all a domino effect.

Mentally, Paxton is struggling being stuck in the hospital all day. Some toys he would normally love at home, he has little to no interest in here. He asks constantly throughout the day if it is time to go home.

The PT team here has done a great job of having him be interactive when he's walking around which is helping keep him engaged. He's taking a walk each day that is getting stronger and a little longer every time. Once he can't go further, he's taking a "walk" around the floor the rest of the way in a wheel chair. The PT team is hiding puzzle pieces along the route for him to find, which he seems to enjoy. 

Today, he even had a friend to help him find the puzzle pieces! Check out the picture of him with Frito, one of the hospital's therapy dogs.

We will keep the updates coming as we know more. Right now we're hoping for a "boring" end to the week where fluid outtake reduces, eating improves, and vitals continue to look good.

Aaron and Elise