Today marks two years since Jeremiah was placed on the heart transplant list. The wait has been long, but looking back, time has passed by quickly. He has been living with a left ventricular assist device (LVAD) for nine months now. Just take a moment and think what it would be like to need large batteries wherever you go. To have a thick cord exiting your abdomen. To have to plug into electricity every night for blood to pump through your body. Jeremiah has handled it incredibly well. As his mom, I am in awe of his strength and perseverance.

Jeremiah is status 1A on the list, which is the top in urgency. The wait continues for him due to very high anti-HLA antibody levels, making it hard to find a matching heart. The antibody levels are high for him due to previous heart surgeries, numerous blood transfusions, and the LVAD itself.

For the last seven months, he has been going through desensitization with weekly intravenous infusions to bring these antibody levels down, improve his chances of a match, and decrease his risk of organ rejection. We are thankful for his team of doctors, nurses, and pharmacists that have not given up on him and keep working to make this transplant possible and successful.

Jeremiah has been doing well for the most part, but it is a lot to handle. In addition to weekly infusions at the hospital, there have been a few ER trips (rule out a stroke, and two bloody noses that would not stop). He is immunocompromised, so he rarely goes out in public. He is on 15 medications a day. We have a backup bag packed in case a heart is available for him, but we don’t dwell on when the call will come. We are trusting in God’s good timing and his protection while we wait. It’s kind of hard for me to pray for a heart to become available because it’s like I am praying for someone to lose their life in order for my son to live. So I focus on God’s protection and providence over my son. I have not been updating much because, honestly, it takes a lot of energy. This post comes now to celebrate that Jeremiah is surviving this long journey with a strong spirit, and to ask for prayers as we continue to wait. Thanks as always for your love and support.