Day 69. 

 

“How are you?” 

Well, I’m coping. I’m invested… heart, soul, all of my being. So I’m here and I’m not leaving and I’m gonna be a part of every single step of this journey, no denying that. 

 

Pain was not well managed yesterday, to a fault of no one. Efforts were given all around within our limitations. 

 

Colby had what’s called a bedside paracentesis. They insert some very large needles into his abdomen to drain ascites (fluid) out of the belly. This relieves pressure, and allowed Colby to have his first stools in days, and passed some needed gas, as his abdo is still quite filled with air. An NG would be a great option for another child in this situation to allow air to escape, but nobody feels confident putting anything down his throat with the current variceal situation. 

 

He was still thrashing overnight when awake. And we adjusted meds to allow for some more rest. This morning has been much of the same. 

 

Some labs have come back better, and some worse. We’re in a strange limbo of knowing if we’re improving or not. 

 

The day ahead will tell us much. Or nothing. But as always… his care is world class, his hair is still a vibe, and he is rocking all of our worlds in every way 🫶🏻