is Day 14 post-transplant. If we have learned anything on this journey, it is that recovery is never a straight line. This weekend was filled with incredible physical milestones mixed with some significant discomfort.To be honest, today was rough for Jake and for us. His belly filled with some excess fluid. While the doctors have assured us that this is not a medical or safety concern, it is quite uncomfortable for him. Seeing him in discomfort is so hard. To help manage this, the team made some changes to his pain management. They have now adjusted his PCA (patient-controlled analgesia) to deal with his new discomfort. Thankfully, this seems to be giving him some relief.But even in the midst of a rough time, God gave Jake the strength to show up and fight.Despite the discomfort, Jake hit some massive milestones this weekend: * He reached his goal feed amount! * He was taken off his last vasoconstrictor. This is huge because it means his new heart and liver are sustaining his blood pressure on their own without that extra support. * He stood up and took steps! PT came by, and Jake was able to stand twice and even take two steps. We are so proud of his determination. * The Vent is almost ready to come off. His settings are now just a step or two away from extubation. We are praying that we are hours, not days, away from seeing that tube removed and hearing his voice.*His external pacemaker has been disconnected. His heart simply does not need it. We are shaking off the exhaustion of today and preparing for tomorrow. We know this journey is a marathon, not a sprint, and today proved that Jake has the fighter’s spirit needed to cross the finish line. We are standing firm and ready to face tomorrow because we know we do not walk alone.”So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” — Isaiah 41:10

Hang in there! You got this and I know you are feeling the support/thoughts/prayers of hundreds of people out here monitoring your progress.
Wow! Praying for the discomfort to ease up and disappear!!! Your messages each day are something I look forward to. Almost like Christmas every day!!! Keep overcoming brave, young man!!!!
Keep fighting the good fight! You are so brave!
Wow! Those are big steps you took today! Tomorrow is a new day. We’re all with you!