A few days ago, Alisha and I got to meet a boy named Caden. I'm actually not sure how to spell his name, so it could have been Cayden, Caiden, Cadin, Cadon, Caydon, or Caydin, but I will just call him Caden. Anyways, Caden is a 7-year old boy who has gone through a similar path to Roscoe. Caden has pulmonary hypertension caused by chronic lung disease (although not as severe as Roscoe) and complicated by pulmonary vein stenosis like Roscoe's. He was re-admitted to UCSF for a remodulin treatment while Roscoe was there, which the doctor's commented was quite a coincidence as the combination of these factors is very, very rare.
Caden was born at 22 weeks and 5 days and spent 6 months in the NICU before going home. Before you think I made a typo, you read that correctly that Caden was born 6 weeks earlier than Roscoe. Caden's hypertension was detected after he went home around 1 year old. Caden had one surgery to repair his narrowed pulmonary veins, but the veins developed scar tissue. The scar tissue and vein narrowing got so bad that eventually his left lung (the same side as Roscoe) was receiving 5% of the blood to his lungs, with his right side receiving 95%. At that point, the doctors and Caden's parents chose to remove Caden's left lung to reduce the pulmonary hypertension it was causing. Since then he's had a cardiac catheterization each year to check the remaining lung. He continues to be on treatments like remodulin to presumably deal with his chronic lung disease.
UCSF arranged for us to meet with Caden's mom (Stephanie) so that she could talk to us about the road she's been down and give us a picture of what Roscoe's future might be like if the surgery was successful. There is a 50% chance that Roscoe won't develop scar tissue, but there's also a significant chance he won't survive the surgery. We were surprised to learn that Stephanie was also a UCSF cardiac ICU nurse, so she could explain lots of the technical details. We were thankful that yesterday we arrived to find Stephanie as Roscoe's day nurse!
The visit and ongoing conversations we've had with Stephanie have been encouraging but also sobering. We know now that Roscoe will face frequent checkups and re-interventions at UCSF after his initial surgery. Stephanie told us that Caden is sometimes (though not always) admitted to the hospital when he gets an illness. Based on the huge smile on Caden's face, we also know that this hospital time won't dampen Roscoe's spirits. Before we met Caden, each of the doctors and nurses would crack a smile on their face when they spoke about him because he was such a character. Though we want Roscoe to spend as much time at home as possible, we know that his future hospital time will be filled with smiles.