Still Healing, Still Praying

Abigail is still inpatient as she continues to heal from surgery and as we work with her medical team to figure out what is causing her to lose weight.

We’re thankful that she has been doing well from a respiratory standpoint and was able to move from the PICU to the Complex Care/Surgical Floor. Her pain seems to be under control for the most part, which we’re thankful for.

On Saturday, Abigail had a CT scan of her face and neck to make sure her jaw looks the way it is supposed to and to see if the surgery has helped open up her upper airway. We were hoping she would be able to come home today, but when they weighed her, she had lost even more weight. Because of this, the team decided to keep her inpatient so they can increase her feeds and continue trying to determine what is causing the weight loss.

She also woke up more swollen today than she was yesterday. Please pray that the swelling begins to go down soon, as we know that will also help decrease her pain and make her more comfortable.

Tomorrow, the ENT surgeon who performed Abigail’s airway reconstruction is supposed to come talk with us about the next steps. The ENT who checked her airway last Thursday was not the surgeon who performed her airway reconstruction, so we’re looking forward to speaking with Dr. Rahbar and getting a better understanding of where things stand and what comes next.

This Thursday, Abigail is scheduled to begin intensive oral therapy to help keep her jaw from becoming tense as she continues to heal. Next week, she has outpatient appointments scheduled every day. As of right now, we expect to be in Boston for another two weeks.

We’re continuing to take everything one day at a time and are thankful for every bit of progress, even when the road feels longer than we expected.

Please continue to pray for Abigail and for our family. Pray that the doctors can figure out what is causing her weight loss, that her swelling and pain improve, and that the meeting with the ENT tomorrow goes well. Most importantly, please pray that we can continue taking steps forward toward the day Abigail can finally have her trach removed.