We arrived late last night in Pennsylvania after a long drive with traffic and several stops along the way. We made it to CHOP around 9 a.m. this morning, but Abigail didn’t get taken back to the OR until around noon. 

 

Dr. Phinizy (Pulmonology) said her lungs look pretty healthy overall. He collected some samples from her secretions to make sure there’s no infection, since he noticed a little redness. 

 

Dr. Ryan (GI) said her esophagus and GI system look healthy and that he didn’t see any signs of acid reflux, which means the medicine she’s on is doing its job. He also placed a probe through her nose to check if any acid ever reaches her airway. 

 

Dr. Borek (ENT) shared that Abigail’s airway is very critical. She has a grade 4 stenosis, which means she cannot breathe without her trach. He explained that it would be very difficult to intubate her by mouth because of her severe upper airway obstruction. 

 

She also has severe stomal collapse and scarring, along with multilevel airway disease involving her tonsils, jaw (mandible/maxilla), and tongue base — all of which cause major obstruction in her upper airway. Because of this, he doesn’t feel she’s a candidate for a single-stage reconstruction at this time. 

 

He said the area of collapse at the stoma would ideally be treated with a resection of the diseased cartilage and an end-to-end attachment to the cricoid (CTR could also be an option). However, because of her current airway obstruction, he doesn’t think she could safely be without her trach right now. 

 

Dr. Borek believes the best approach is to give Abigail some time to grow before doing another jaw distraction and then moving forward with the airway reconstruction afterward. He also shared that he doesn’t think letting Boston proceed with the planned reconstruction in April is the best idea since her trach couldn’t come out until her upper airway is more open after another jaw distraction. He’s also unsure if Boston plans to do multiple reconstruction surgeries. 

 

Devin and I would really appreciate your prayers as we try to figure out the next step and which hospital to move forward with. Both hospitals are excellent when it comes to complex airway cases — they each just have their own pros and cons.