On Friday, we were on a mountaintop. Jake was progressing so fast. He was up, walking, and breathing so well that he was back on a standard nasal cannula during the day. He was doing so well, in fact, that the team made a plan to move him out of the ICU and into the TCU (Transitional Cardiac Unit) on Saturday, with the Rehab floor being his next stop after that. From Rehab, he will eventually discharge but not without a very important stop on the 7th floor to ring that transplant bell!

However, this morning we hit a bit of a setback. Jake had a significant coughing fit that caused his sats to drop into the 70s. He was unable to recover hit sats so he placed back on CPAP, which brought his numbers back up to the high 90s. A chest X-ray revealed the cause was a large pneumothorax (air pocket) on the left side, in addition to a smaller one on the right. The team decided the best and safest course of action was to place a chest drain, similar to a chest tube but specifically for air on both sides. This will allow the air to drain so his lungs can finally, fully inflate. The right pneumo drained immediately but the left seems to be following suit with time.

While this feels heavy to face setback after setback, this is a “speed bump” rather than a road block. We have to keep reminding ourselves that all the big things are going right. Jake is one of only about 40 pediatric patients in the entire U.S. to ever undergo a dual heart and liver transplant. That is a staggering statistic. Recovery is grueling because the miracle is so massive.

A year from now, it won’t matter if he spent six weeks or eight weeks in these hospital walls. What will matter is that he has a healthy heart and a healthy liver that will give him the best life possible. We are playing the long game, trusting that every hard day now is an investment in a lifetime of health later.Thank you for continuing to pray for him through these “speed bumps.” He is a fighter, and he isn’t finished yet.

Let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith.Hebrews 12:1-2