Today has been a day full of trials, but even more so, it has been a day full of miracles. We are learning that on this journey, fear and faith often walk hand in hand.

First, the good news: Jake continues to do well off ECMO. Because he is stable, the team has been able to lower his sedation significantly. After days of waiting, we finally got a glimpse of our boy. Seeing him “there” with us again has been healing for our hearts.

However, the day was not without its scares. Overnight, Jake spiked a fever of 103. Thankfully, it was back to 98.5 by the afternoon. The team believes this was just a physical response to the stress of yesterday’s surgery. Because of the fever, they decided to postpone his Cardiac Cath, giving his body a little more time to recover. We also received his one-week heart labs, and everything looks good, another answered prayer.

The biggest trial came from a concern from Neurology during his exam. They noticed that Jake was not using his right arm as much as his left. He is able to move it, grab, and squeeze with that hand, but he was unable to hold the arm up in the air. We hoped this was from the ECMO cannulas, which had been running over his right shoulder. But to be safe, the team ordered a Head CT, which showed a blood clot on the left side of his brain. This led to a CTA to better visualize the vessels.

The results were terrifying, yet miraculous.They found that Jake has a thrombus (a blood clot) on the left side of his brain. This is most likely a complication from being on ECMO. But here is the miracle: the clot is “non-occlusive,” meaning it is not blocking blood flow. Blood is still able to reach all vessels of his brain.The treatment for this is anti-coagulation medication, which Jake is already on from transplant. God protected him even in this complication.

While it was a stressful day, we realize we have been given another miracle. We are grateful for Jake’s amazing team. They jumped into action the moment they suspected a problem and kept Dan and I informed every single step of the way. We are ending the day exhausted but holding onto our faith.

“When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown.”. Isaiah 43:2