Almost time to go home (for some of us)

 Just a quick update to say Lily is doing well. She's been on CPAP since she was extubated last Thursday. The team is slowly working on weaning her off the CPAP to room air, and also slowly weaning her IV medications. She's on a pretty low setting on CPAP right now (6 at 30% for you medical folks) and they've been giving her short breaks with the CPAP off. Today they were able to shut off the versed completely.. yay! One sedation med down, two more to go. Next they will start weaning her morphine (which is really for pain, but can have a sedating effect). A doctor told Joe today that it could take 5 days to 2 weeks to wean the morphine 😬

Tomorrow (Tuesday) is her esophagram. They'll put some contrast down her esophagus and take some images to make sure there is no leak. If there is a leak at the repair site, or anastamosis as they call it, she may need a chest tube and they won't be able to start using her G tube until the leak is resolved. If there is no leak, then they can start using her G tube right away for feeds and medications. 

On Wednesday morning, the rest of us are heading back to Michigan. We'll stop somewhere in New York again Wednesday night and drive the rest of the way home on Thursday. Joe will fly back out here sometime next week most likely while I stay home with the other two and work on the weekends. 

Not going to lie, it's a pretty defeating feeling leaving without Lily. We knew coming out here that there was a chance she would need longer than a month, but we were very hopeful that she could come home with us. We really can't say how much longer she will need which is why we're heading home. We can't just keep our family out here indefinitely when we have jobs and insurance to also consider. Housing is also an issue when you don't know how long you'll be here. I hate to complain, but the communication at Boston Children's Hospital (BCH) has been very poor. We get conflicting messages from day to day, and no one can seem to give us satisfactory answers to our questions about her length of stay. We're really missing our Grand Rapids team. 

Trying to stay positive. She had a very successful surgery and everyone tells us that her recovery is going very well, despite the fact that it feels so slow to us! It's hard to move at a snail pace when we're so close to the finish line! Almost there.. almost there..

Lily with her CPAP

Snack break at the park

Happy Cora