One year ago today I created and posted this picture:
I could never have imagined the road that was before us.
There wasn't a big celebration of this anniversary today. Instead, there were many phone calls with doctors and therapists and discussions with the PICU staff about what the next few days hold for Brinkley.
Brinkley's respiratory issues seem to be fairly well under control now, so we will start working on his gastric issues now. Tomorrow we are expecting to have an MII and a swallow study. These help gather specific data about his reflux so that we can decide how best to tackle the issues. We are potentially looking at a surgical procedure. There was some debate today about where that would need to happen (GHS or MUSC). Once a plan of action is decided, Dr Kavarana (our cardiac surgeon) will be consulted and decide where the surgery would need to happen. The placement of Brinkley's pacemaker will make that a tricky decision.
Today he was comfortable and seemed more like himself. I even got a smile out of him tonight. (I think that was because I turned the basketball game on for him.) When I arrived tonight to get him settled for the night, this is what I found:
Thank you for your continued prayers. Please pray for him tomorrow as I am sure he will be grumpy. He hates to be messed with and will be having two tests done. Also, continue to pray for wisdom as we give our opinions on the treatment plans.