Right now, the most likely scenario is that Sabrina will need to stay inpatient at the hospital until she receives her transplant. Although she looks great and is clinically doing well, part of her stability is thanks to a drug called Milrinone, which continuously feeds through her IV. It helps her heart squeeze more effectively. Her heart isn\u2019t healthy enough to manage without it. There\u2019s a small chance that someday she could come home with nursing support, but that would move her to 1B transplant status, which would significantly lengthen her wait time for a donor heart.<\/p>\n\n\n\n
Most Asked Question #2: When will she get her transplant?<\/strong><\/p>\n\n\n\n This question is so incredibly loaded. The short answer: the timeframe we\u2019ve been told is about 8\u201310 months, but it could be longer or shorter. We\u2019re planning for roughly a year of living between home and the hospital.<\/p>\n\n\n\n The longer answer: there are many factors that go into how a donor heart is matched \u2014 it\u2019s not a simple line or number system. Sabrina is so young that she hasn\u2019t developed antibodies that would attack a heart of a different blood type, so she can currently be matched with any blood type (this is known as ABOi). She\u2019s tested every few weeks to confirm this hasn\u2019t changed. But because she\u2019s so young, there are simply fewer donor hearts. So we wait \u2014 and we hope.<\/p>\n\n\n\n Most Asked Question #3: After her transplant, will she be better?<\/strong><\/p>\n\n\n\n Yes \u2014 with some caveats. I may share more detail another time, but in short: after her transplant, Sabrina should feel better, have more energy, and be able to do nearly anything she sets her mind to. She will need to take immune-suppressing medication for life to prevent rejection of her new heart. These medications will make her more susceptible to everyday illnesses. And at some point \u2014 likely within 20\u201330 years \u2014 she will need another transplant. I wish with all my heart she didn\u2019t need this, but if that\u2019s the path we must walk, then daily medication and long colds are a small price for the gift of life.<\/p>\n\n\n\n Most Asked Question #4: What about a pacemaker, medication, or alternative treatment?<\/strong><\/p>\n\n\n\n The Heart Failure Team at Children\u2019s Minneapolis has been wonderful to us, but we\u2019ve also sought second opinions from Mayo Clinic and the University of Minnesota (the three pediatric heart programs in our area). We\u2019re currently awaiting a second opinion from Boston Children\u2019s Hospital, one of the top programs in the country. We trust Sabrina\u2019s doctors but we\u2019re leaving no stone unturned. We\u2019ll do absolutely anything for our daughter.<\/p>\n\n\n\n Most Asked Question #5: How are you guys doing?<\/strong><\/p>\n\n\n\n When people ask this, sometimes my brain just short-circuits and I end up staring blankly. \u201cGood\u201d is polite, but it\u2019s not true. We are not good \u2014 but we are determined that someday, we will be.<\/p>\n\n\n\n Right now, we\u2019re getting by. Our focus is making sure both of our children feel happy, secure, and loved. Kyle\u2019s work has allowed him to be on a reduced schedule, working two days a week. The night before those shifts, he stays overnight at the hospital, leaves early for work, and is home with Audric that evening. My employer has been incredibly accommodating, allowing me to work remotely from the hospital with flexible hours \u2014 sometimes squeezing in a few hours after Audric\u2019s bedtime. We switch off between home and hospital every day. Our parents and Nana Pam have been an incredible support system \u2014 helping with Audric, giving us breaks, and making it possible for Kyle and me to spend time together at the hospital or take Audie to events. Some friends are still helping out by bringing us meals, which is amazing. We\u2019re making it work. Some days are very hard, but we\u2019re keeping our sense of humor, and we\u2019re finding joy, laughter, and gratitude wherever we can. We are determined to make memories as a family \u2014 even if this stage looks nothing like what we imagined.<\/p>\n\n\n\n That\u2019s all for now. Please keep Sabrina in your thoughts, and keep sending up prayers for her. We appreciate it so much. \ud83d\udc9c<\/p>\n\n\n\n #SabrinaStrong<\/p>\n\n\n\n A couple of weeks ago, after getting the okay for outdoor visits, Sabrina got a playdate with her big brother, Audric! She had fun watching him run around the playground across from the hospital, and then we all got to sit in her room and watch some Spidey and His Amazing Friends (a favorite of both Audie […]<\/p>\n","protected":false},"author":2394,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-93","post","type-post","status-publish","format-standard","hentry"],"acf":[],"yoast_head":"\n![\"\"](\"https:\/\/cota.org\/cotaforsabrinaschangeofheart\/wp-content\/uploads\/sites\/6656\/2025\/12\/Photo-8.avif\")
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