Apparently writing these late at night is the only way, so here’s a little update from yesterday!

Firstly, thank you for supporting our family. We feel the love and prayers and well wishes, and are so grateful you care for our Colby! 

After my last update, we had a few days of testing off the TPN that showed us that Colby can no longer naturally sustain his glucose without intervention, or continuous nutrition. The best way I can describe it, is that his TPN feels like life support. Without it, his body is so unstable. 

The teams met a few days ago to brainstorm some ideas for how we could get him any breaks off the TPN, as they don’t like to send kids home on 24hr support. Currently we’re testing corn starch being given as a complex carbohydrate (mixed in liquid, he takes this orally by syringe). We tried it today while still connected and watched his blood sugar remain quite stable for a couple of hours. This seems to be the least invasive approach to an attempt at stabilizing for “time off”. I don’t know the clear path yet as we’re taking it day by day, but this felt encouraging. It was encouraging enough that he took it no problem! Colby has a lot of texture challenges when swallowing, but this kid is such a champ! 

Tomorrow Mike and I start training for home TPN! The thought of being able to bring Colby home is so so exciting, still weeks away, and also a little terrifying to be the ones in charge of his central line access at home. The risk of infection is high. But we are so capable, and my hope is we pick it all up quickly! I’ve been a studious parent all of Colby’s life, trying to be the best caregiver I can be. I’m hoping our training goes smoothly! 

We still do not have a liver donor match for Colby, but I’m hopeful we are getting close. It’s been nearly 3 weeks since Colby was officially listed for transplant, and with the number of people that have reached out and called living donor services, I can’t help but feel maybe we’re getting close… 

Being listed for transplant is very hard emotionally. And mentally. I’m thankful in a sense that Colby is so little to not understand the gravity of it all. Waiting for an organ, is something I wouldn’t wish on anyone. This whole idea that you must be sick enough, and yet not too sick, is… well, sickening. I can’t help but think of the many many people waiting for their own second chance at life. If you’ve ever considered for Colby’s sake, please consider maybe for someone else in your life. Or someone you don’t even know! Did you even know you can donate an organ anonymously?! We hold so much power in the decisions we make, living a life of free will. What an absolute privilege and honour. 

And to those that have been “overwhelming” the system in calling to inquire about being a match, THANK YOU! Let’s flood the system with positivity, and gratitude, and a willingness to learn. My hope is they rise to the occasion, and we can spread the word that there is so much we can do to help each other, human to human! 

The greatest gift I’ve given myself since Colby’s precious life joined ours, is to be a willing student in life. Unafraid to say when I don’t know, or don’t understand. Willing to learn more and do better. Any parent of a complex child knows that the learning never stops. We may wish it to sometimes, even the things we learn are things no parent should have to face. But head-on, and head-high, is the only way through the trials and tribulations. 

If you made it this far in my update, thank you. Grateful you care 🫶🏻

*photo by my lovely friend Azra (Revel Photography) who came and snapped a few pics in the room yesterday!