November 3, 2023

Today was a big day for David. He had his first surgery which placed Goretex bands around his pulmonary arteries to restrict blood flow to the lungs. It was hopeful that this would have worked with the plugs placed within the arteries on Wednesday, but David’s body wasn’t ready for it at that time. It was too risky to try to place the plugs via catheterization again with the two stents he has, so today David went the more conventional route to wrap the bands around the arteries. Today was a good day for the surgery since David’s body was heading down the path of needing them soon, but he was still stable. Now his lungs won’t be flooded with all the blood that comes from his heart, but rather some will be diverted to the rest of his body as well. 

David was stable overnight, and they did not have to adjust anything. That always makes us happy to hear. He did have a “bath” overnight in preparation for his surgery. David also had moments of alertness and moving his arms around. As noon approached and he had his second bath, we got word that his surgery needed to be pushed back due to a different emergency surgery that needed the cardiac surgeons in attendance. Around 3, David left his room (we said he was part of a train with all of the contraptions that accompanied him), to head to the operating room. We were able to see him in his room again around 6:30 this evening. He’s been sleeping since he’s been back – likely still heavily sedated. He has a little puppy on his dressing covering up his surgical opening, and a new line that will likely be in for a week to drain extra fluid from the area of his surgery. Most kids have that line removed sooner, but due to his nutmeg lung, the surgeon recommends keeping it in longer to ensure any excess fluid comes out. 

We’re not sure what the next steps are at this point, but I’m sure David will tell us. He’s already done way more than anyone anticipated, and each day we’ve had with him has been a blessing. We’ve been taking it one day at a time at this point. I will be discharged tomorrow afternoon and we’ll try to find a new balance that will work so that we can spend as much time with David as we can, but also provide support at home for Eli and Anna.