Philly bound

August 22: Philadelphia

CHOP, here we come! James has an appointment on the 22nd for...?? We don't have many details yet, but when do we ever...? We know what CHOP (Children's Hospital of Philadelphia) can offer, so they'll assess him and admit/test/operate based on his condition at that time.

Until then, he is having a wonderful time at home with his sister. Since she had been staying with grandma, they weren't actually reunited until a few days ago. Lots of giggles are finally filling the apartment again, as James becomes more at ease and less guarded by day. We had two doctor visits already this week, and his effusion has not noticeably progressed. CHOP clearly thought this wasn't urgent, since they didn't schedule him immediately, and this made our local docs nervous - but "not urgent" is a-ok by us.

First follow up done!

It's been a wonderful yet rocky few days. We're thrilled to have James home, but he is clearly affected by his summer ordeal. He wandered around somewhat in shock on his first night, and continued to be stiff and scared yesterday. It took 24 hours to convince him to leave the apartment again (to go to the playground) and he's been having nightmares.

His doctors wanted him back by Wednesday to follow up. It was not easy to get him back to in the hospital today. He managed like a champion, but the emotional toll is significant.

Unfortunately, today's follow up was not encouraging. The effusion has continued to progress. We are waiting for CHOP/Philadelphia to give us an appointment once they review today's test results, but we expect they'll want to see and admit him sometime next week. 

He's now having fun with his evening to start to make up for the challenging day!

Homeward bound

We're not done, but we ain't staying here!

James' tube hasn't had output in over a week. His X-rays and ultrasounds show that there is still fluid, and it's not all old - so the leak still exists. This problem of pleural effusions isn't resolved.

But, we've exhausted all the standard treatment options. We could wait longer to allow more fluid to drain, but the tube isn't even draining anyways... His effusion doesn't seem to be accessible by chest tube. There is no point in giving it more time.

The good news is: most of the fluid has been removed over the past month, and the leak appears to be a slow leak, so it doesn't seem to be critical at this time. We're taking James home to enjoy his summer!

The bad news is: this is just a temporary reprieve. As soon as the fluid builds up again (next month? next week? this week?), we'll be road tripping to Philadelphia to check into Children's Hospital of Philadelphia (CHOP). Their Center for Lymphatic Imaging and Interventions offers innovative imaging technology, thus allowing more precise surgical interventions, which we're hoping will be able to locate and more definitively close his leak.

Also, super reaffirming: CHOP, the only east coast hospital that does this, has performed this procedure on 50 children!! I mean, hey, it's not rare at all!! 😳😳😳

In the meantime, here's a photo of James taking his zebra pilot for a plane ride 😄