Today was an absolute whirlwind. We arrived at the hospital at 9am and did not return to our hotel until 5:30pm. Our day included a video swallow study, anesthesia consult, meeting with the pulmonologist and ekg & echo. I am in love with this hospital and the people we met today. Our day was soooo loooong because each and every person was incredibly thorough, professional and kind. Ben was so tired by the end of that day that he fell asleep during his echo. Easiest echo ever!
There’s not much in the way of results to report at this time. The real information will come on Wednesday when Ben is sedated for a chest CT, flexible bronchoscopy and rigid bronchoscopy. The pulmonologist we met with today explained that when he started practicing in the 70’s, complete tracheal rings were considered a death sentence. Yikes. He also said Cincinnati Children’s is incredibly aggressive in their approach – they are willing to take on cases considered inoperable. BUT, they are also very conservative and look at all aspects involved, heavily weighing the consequences, before recommending surgical repair. Tracheal reconstruction is no joke. And at the moment, the only information we have is a 3mm neonate tube had to be used when Ben was intubated for his tonsillectomy. The size of a stir straw!
Today’s doctor was also very familiar with healthcare in China. He’s been to Shanghai and Beijing to help train doctors on safe bronchoscopy techniques. So when he asked me how much I know of Ben’s history and I replied, “Well, I know he’s alive,” he totally understood. Ben is our little miracle and it’s such a privilege to be his family.