The plan

Yesterday was a big day full of meetings with Doctors and surgeons and everyone else who wanted to have a say in Pierce's care moving forward. His primary surgeon described it rather well when he said that the main problem with all of the misinformation we have received is due to an over abundance of chefs in the kitchen. 

After a nice long discussion though, we did finally come up with a plan that they may even stick to this time! Yesterday they restarted his NG feed, and increased it steadily to 45 ml/feed over 45 minutes as of 8 am this morning. In contrast his last attempt on Friday they did only 10 ml over a two hour period. Then at 2:30 today he was taken to the OR where they placed a sort of electrode down his esophagus to do what is called an impedance study. It basically records for the next 24 hours every instance of reflux, as well as how far up the esophagus it goes. Once that is finished it will take the surgical team a few days to interpret the information and see how aggressive his reflux is. 

The next for sure step is a second bronchoscope. That could be done any time between Friday and next Tuesday, depending on the availability of the ENT surgeon. The scope would be looking for two things. First, Dr Fenton believes there is a possibility of a laryngeal cleft. If that was present it could account for the majority of his symptoms and a simple surgery could correct it. The next thing they look for is a localized narrowing of the trachea. Something to show evidence of the innonimate artery pressing down on it. Once they have the answers to those two questions plus the results of the impedance study, we will have enough information to make a much more concrete decision about how best to move forward. 

Pierce is continuing to be a rockstar, and although I hear them say it about every baby to every parent, I feel like they REALLY mean is when they say what a cute little boy he is! On another quick note, Amy and I would like to express how incredibly grateful we are for the support we have received from everyone. The phone calls and texts of encouragemrnt from friends and family, Kristi and Ski for putting up with our craziness for a wonderful thanksgiving dinner, Guy and Carol Ann for their nonstop support, Dave and Dorothy Gregorson for being so quick to run down the hill with a helping hand, and everyone else. Truly we are blessed and I for one don't know how I will ever repay all of the kindness. So again, sincerely, thank you!