I should have started these daily recaps weeks ago. The reality is, I just have to go back and read my text threads to remember all that’s been going on. It’s a lot. 

Colby was gearing up for another 5 hour test of the continuous feed from the PN he receives through his PICC line. Yesterday we had to cut our 5 hour test short as his glucose kept dropping (after so many days of stability). We decided today to ramp-down for 2 hours instead of 1. That means we slowly cut down the speed at which he’s receiving his nutritional support (which has dextrose that keeps his glucose stable)… in hopes that he wouldn’t plummet again coming off. 

Today was worse. Within 20 minutes of being off the line, Colby’s blood sugar started dropping. We knew we needed another critical sample (this is a blood draw at the time of a low blood sugar to test for different hormones and such). So we carefully allowed him to go lower today watching both his cgm sensor and doing heel pokes to confirm. 

He started to get to irritable, then came the sweating. Colby’s had low blood sugar before but I had never seen him this symptomatic and it was scary. 

Fast forward, Colby is stable again running the continuous nutrition (we could not continue to “test” time off the line today and put him back on fluids almost immediately). It took a while for his sugars to rebound even with multiple aids. 

We now don’t know whether the answer is to ramp-down for longer (maybe 4 hrs versus 2), or if the answer is that he cannot come off the PN at all. 

 

Colby has been bottling less than ever. He does not eat much food if any, and nutrition has become our biggest hurdle right now. 

 

The ultimate goal is to keep him as stable as possible, and get him as “healthy” as possible for transplant. It’s proving to be so much easier said than done. 

 

Home feels super far away right now. My girls are so sad, we’ve been apart for too long, no end in sight. We are still talking about the possibility of going home on the PN. But we are still hopeful we’ll get a call with a liver any day - which only extends our time away from home but inevitably brings us closer to life together again 🫶🏻 

 

Thank you for your support, and for sharing the word about our brave Lyon! 🩵