The bedside procedure from yesterday unfortunately did not provide the resolution we were looking for. This morning’s X-ray showed only marginal improvement on the right side and a worsening on the left.

The challenge we are facing is tied directly to Jake’s post-Fontan anatomy. Because he has undergone multiple thoracic surgeries in the past, his chest cavity contains significant scar tissue. In a typical lung, air pockets (pneumothorax) are connected and can be drained by a single tube. However, Jake has a lot of scar tissue so the air is isolated in different pockets. Because the small pockets are not communicating well with one another, the drain couldn’t reach all the trapped air from where it was.

The team decided to take Jacob back to IR (Interventional Radiology) to see if, with fluoroscopy, they could safely place the tubes to remove the largest pockets. This setting allows the surgeons to precisely target the largest pockets to ensure the lungs can finally expand fully and stay inflated. In IR, they were able to place two new chest tubes to target the the largest areas.

The results were almost immediate as the post-procedure X-ray already showed very small to no pneumothoraxes for both his lungs. This is the breakthrough we have been waiting for. Hopefully, this will finally give his lungs the space they need to fully expand and get going.

It is never easy to see Jake go back into a procedure, especially when we are feeling the effects of a long inpatient stay. However, seeing the visual proof of improvement on the X-ray has given us the “second wind” we needed. We are hopeful that this intervention is the turning point that finally clears the way for him to make progress. While he now has 5 tubes in place, we are hopeful we can start shedding these tubes in a few days. He had already moved off the CPAP back to high flow this afternoon. We will continue the use of the CPAP overnight.

Jacob, like the warrior he is, handled this setback with grace and purpose. We are so proud of his resilience and so thankful to have this speed bump behind us.

We thank the Lord for being in that procedure room with Jake today and for the clear improvement we see in Jake’s lungs already. It feels so good to have been given another answered prayer. We know God has big plans for his future. We pray that this is the definitive turning point Jake needs, that his body heals quickly from today’s procedure and that these tubes do their job perfectly without limiting his ability to move around.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13