I don't quite know how to describe these past 24 hours. Elise and I have gone through every emotion imaginable. As we sit here on Monday night, the road to recovery has gotten longer and is higher risk than ever, but Paxton is here, he is stable, and he's still fighting.

When Paxton went downhill fast yesterday afternoon, it was a quick decision to intubate him as his O2 levels were dropping. He then went into the cath lab overnight, and the answers we got weren't unexpected.

The conclusion: his body isn't handling the Fontan surgery's physiology. His pressures have gone up, negatively affecting the efficiency of the rest of his body.

We met with a team of doctors, surgeons, and nurse practitioners this afternoon. After consultation with each other, their colleagues in Omaha, and counterparts around the country, Omaha has decided they cannot effective support Paxton any further. They laid out the likely courses of actions a bigger hospital would take. All courses of action at this point lead towards getting him healthy enough to go on the transplant list. 

We don't know where we will transfer to. For now, he needs to get a little healthier in his lungs to have a transfer to anywhere be less risky. While the ICU team in Omaha works on that, they are also sending out his files to all the bigger pediatric cardiology hospitals in the country. We'll find out this week who is willing to accept him as their patient, and we'll be able to make a decision from there.

Today has been baby steps towards a transfer. His lungs are opening up a little bit better on a little bit less oxygen support. He also has some diuretics to keep getting excess fluid out. 

Our little man is the bravest kid I know. He needs a lot of things to go right over these next hours, days, and months. But there's a path. While he goes down this path, his good buddy "Cookie Dough" is sitting right by his side like he has nearly his entire life.