Today we had an interdisciplinary meeting with Benjamin’s doctors and support teams to review his care plan and what support he will need moving forward. As always, we continue to advocate for the best care possible for him. 

 

Because of Benjamin’s many diagnoses, he needs a hospital with a strong multidisciplinary system where communication is seamless and collaboration is constant. Right now, there are differing opinions within his current team about how much each condition is contributing to what we’re seeing clinically. 

 

What we do know is that his lung disease has led to significant heart involvement, including PPHN (persistent pulmonary hypertension), BPD (bronchopulmonary dysplasia), right-sided heart thickening, and now pulmonary vein stenosis. Together, these conditions may be affecting overall perfusion throughout his body, which could be playing a role in his inability to tolerate feeds—but this is still being debated, and there is no single clear answer yet. 

 

It is an extremely complex and rare combination of problems. With the right treatment and expertise, there is hope that he can outgrow many of these challenges, though pulmonary vein stenosis will require ongoing, specialized care. 

 

After much discussion, we believe Boston Children’s Hospital may be the best place for Benjamin, and we have begun the transfer process. The most difficult hurdle right now is insurance approval for transport, as he will likely need to be life-flighted by plane. 

 

It’s incredibly hard knowing that insurance decisions can impact the timing of life-saving care. We are continuing to push, advocate, and fight for Benjamin every step of the way. 💙 

All and all Beni looks comfortable today! He was lucky enough to have one of his favorite nurses. We sure will miss the team that got him this far!