Jake has officially transitioned from “patient” to “survivor”. He crushed three long walks yesterday, but the highlight was watching him literally chase his heart surgeon down the hallway to ask for a real shower!<\/strong><\/p>\n\n\n\n The surgeon happily approved, and Jake made the long trek all the way to the 12th floor. After weeks of bed baths and wipe downs, that shower was a massive boost for his spirit and a true testament to his increasing stamina. He tackled therapy head-on, working with PT, OT, and Speech to bridge the gap toward independence<\/strong><\/p>\n\n\n\n Jake also gave up his five finger pokes a day for a Continuous Glucose Monitor (CGM) to manage his steroid-induced diabetes. This is a common, and no unexpected side effect of the high-dose steroids and immunosuppression meds needed to keep his new heart and liver safe. We hope it\u2019s temporary, but it gives us the data we need to keep him stable.<\/strong><\/p>\n\n\n\n We had a great visit with the Pulmonary team. They confirmed his lungs are structurally healthy and simply “recovering from the battle” of surgery and high pre-transplant pressures. They are healing and getting stronger every day. They did do some imaging this morning to rule out damage or weakness of his diaphragm due to the en bloc surgery. <\/strong><\/p>\n\n\n\n Amidst all the hard work, Jake had a very special visitor yesterday. He got to meet Kurt Warner, who was here with Baskets of Hope. For those who might not know, Kurt Warner is a Pro Football Hall of Fame quarterback and a St. Louis legend. He won Super Bowl XXXIV, and his life story is defined by faith, resilience, and never giving up. Having a man of that caliber stop by to encourage Jake was the perfect gift for a kid fighting his own way back.<\/strong><\/p>\n\n\n\n Today was a significant but incredibly tough day. We sat down for a family meeting with the full medical team to discuss the long-term roadmap for Jacob\u2019s recovery. To be honest, it was draining. Sitting in a room with a dozen specialists, some of whom we know well and others who we do not know at all, is a difficult experience, and while some of our concerns were addressed, we didn’t walk away with all the answers we were looking for. <\/strong><\/p>\n\n\n\n One immediate victory from today\u2019s meeting was getting ENT on the schedule. Jake\u2019s vocal cord injection is officially set for tomorrow at noon. They will attempt the procedure with minimal sedation. This is the vital “first step” on the path to real food.<\/strong><\/p>\n\n\n\n After eight weeks in the hospital, the physical strain and total lack of control can feel like a heavy weight, especially for a 17-year-old. But Jake is a fighter. While being restricted from eating has caused him a lot of frustration, we see his determination. We are desperately hopeful that tomorrow\u2019s procedure is the “win” that tips the scales, reigniting the fire he\u2019s carried since day one. He has come so far, and we know that a little bit of normal will go a long way in fueling his next chapter.<\/strong><\/p>\n\n\n\n Today served as a powerful reminder that the road from surgery to recovery is rarely a straight line; it is full of unexpected ups and downs. There are days when the current feels overwhelming, and we have to fight with everything we have just to not be washed away\u2014but we are holding. We are anchored by Jake\u2019s incredible grit, the expertise of his team, and the unwavering support of this community. We are moving forward, one step and one prayer at a time, trusting that the same hand that carried him through surgery will carry him all the way home.<\/strong><\/p>\n\n\n\n You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy, that I might sing praises to you and not be silent.<\/strong><\/p>\n\n\n\n Psalm 30:11-12<\/strong><\/p>\n\n\n\n The theme for the past few days has been simple: Momentum. Jake isn’t just recovering; he is trying to reclaim his life. While today brought some heavy emotional challenges, the physical progress he has made leading up to this point is nothing short of inspiring. Jake has officially transitioned from “patient” to “survivor”. He crushed […]<\/p>\n","protected":false},"author":2307,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-439","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\n![\"\"](\"https:\/\/cota.org\/cotaforjacobshope\/wp-content\/uploads\/sites\/6595\/2026\/01\/PXL_20260106_213751661-771x1024.jpg\"){kind=spacer}
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