Abigail was discharged from the University of Virginia this morning, and we headed straight home—everyone was more than ready to get back. Unfortunately, we got stuck in standstill traffic for over an hour, so we didn’t make it home until later this afternoon. 

 

I was able to talk with both the ENT at Boston and the ENT at CHOP today. The ENT at Boston shared that he feels the doctor at UVA did everything he himself would have tried to remove Abigail’s tonsils and adenoids. His current plan is to move forward with the airway reconstruction surgery (LTR) in the spring, as he had told us before. After she heals from that surgery, he would then attempt the T&A again. Our concern with this approach is that typically doctors don’t recommend leaving the trach in for too long after reconstruction because it can affect healing and even cause scar tissue to grow. I realized afterward that I forgot to ask him how long is considered “too long,” so I’ll need to follow up with him on that. 

 

The ENT at CHOP wasn’t surprised that the surgery couldn’t be completed yesterday. He explained that this is actually common in children with small jaws. When we go for Abigail’s airway evaluation in October, he’ll assess whether he might be able to safely perform the T&A then, or if it will need to wait. He also mentioned that in some cases, children need to undergo reconstruction surgery first, then the T&A, and sometimes even a second reconstruction surgery before the trach can finally come out. At that visit, he’ll examine her airway alongside the full team—GI, pulmonology, and the plastic surgeon—and then give us a clearer recommendation for next steps. 

 

Devin and I are really hoping we’ll be able to make a final decision on Abigail’s care after hearing CHOP’s input next month. Please continue to keep us in your prayers as we walk this journey with Abigail, especially during this next stretch. Thank you for being with us every step of the way.