And that’s a wrap for this stay at hotel CHOA! We feel equally terrified of the “worst case” as we do hopeful for the best. It is comforting that John has looked very good for the past few days.. 

Some changes to his feeds seem to be helping his breathing, as there was continued concern for aspiration. Given the improvement with the thicker milk, it seems that may have been the case. Fortunately we’ve modified other things so that he can drink his milk (which is almost as thick as honey) through a bottle and continue to improve his oral skills! We’re cleared to start purées in the coming weeks. 

His G tube site is already healing nice and he seems to be in minimal pain. This will be instrumental in consistent weight gain and helping support him on days when his breathing isn’t ideal. 

We have no idea what the coming months will look like, and the worst case scenario that lives in our head in almost paralyzing, but we’re praying and hoping for a lot of good days ahead.