Days are blending into each other and I’ve pretty much lost all track of time.
Mike and I completed intensive training to take Colby home 24hrs on the Parenteral Nutrition. It was determined that breaks off the line were not safe for Colby due to his hypoglycaemia. We are getting closer to discharge! Which is exciting and terrifying. Being responsible for this kind of medical care at home feels pretty overwhelming, but I know we are capable of doing hard things! 

Last night took a rocky turn when Colby woke about 2:40am. I went to prepare a bottle for him, as he would normally wake through the night for feeds… and when I went to his crib, to my surprise, his PICC line was lying in the bed. He’d ripped it right out!
Thank God he wasn’t bleeding from the sight. But then his blood sugar dropped rapidly and we had to get access as quick as possible. 

After 3 attempts, a doc from the PICU was able to get a long line in and we have been running dextrose fluids since. The team is hopeful interventional radiology can get Colby in today to put a new central line in, as nobody wants to run his nutrition through an IV. It’s too viscous, the risk of it going interstitial and burning his skin are high. 

I’m thankful this happened in hospital, and not at home. 

Colby’s itch has become out of control once again… he bleeds every day and has scratches all over his body now. We assume the picc was pulled out as he scratched the dressing off and then yanked it altogether. 

On the transplant side, I spoke with an incredible woman at living donor services this week named Michelle! At the time, she said there were 7 confirmed blood type matches, and a bunch more intake packages she was waiting on. I got an email yesterday to say that “donors are in active testing”. This is so exciting, but doesn’t mean we stop here! We push hard until we get this boy a liver, so please don’t stop spreading the word! We still believe that a living donor match is his best chance! 

If you (or someone you know) has O type blood (+ or -), is 18-55 and healthy, and is interested in learning more about what it takes to save a life with a piece of your liver, please reach out to me, or directly to living donor services in Edmonton! 
780-407-8698

I learned this week that there are ELEVEN children waiting on livers from Sask to BC and North! It’s not just Colby that needs your help, so share share share, and at the very least, please consider registering as an Organ Donor! 

I’m tired, but the fight is still on, so we push forward! Keep the 🔥 lit!