A Little More Hope in Our Journey

Abigail got discharged from the hospital Tuesday night, which we are so thankful for! She always seems to do better healing at home and outside of the hospital, and we were all ready to get back to the apartment.

While she was inpatient, they increased her feeds by 40 mL to hopefully help her gain some of the weight she has lost. Since coming home, Abigail has been so happy and is already back to being her energetic self!

On Tuesday, Dr. Rahbar, Abigail’s ENT surgeon, spoke with us about the next steps in her airway journey. Thankfully, we got some really encouraging news. The part of Abigail’s airway that the other ENT doctor said was collapsing is not the part that was repaired during her airway surgery in April. The area that is starting to collapse is right where her trach goes, and Dr. Rahbar said this is very common in children who have trachs. Once the trach is removed, that area will usually harden on its own because there will no longer be anything putting weight or pressure on it.

Dr. Rahbar does want to remove Abigail’s tonsils and adenoids in the next few months because they are enlarged, but he wants to give her some time to heal from her jaw surgery first. We should find out the date for that surgery sometime next week.

He also wants us to really push capping once the swelling from surgery has gone down. He believes Abigail may be able to tolerate capping now, and once she is able to tolerate it 100% of the time, he would be comfortable moving forward with removing her trach. That was such an encouraging thing to hear!

Thankfully, Abigail hasn’t been experiencing much pain, and we are so grateful for that. Today we also started using a device called a TheraBite, which helps stretch her jaw and keep it from getting tight while she continues to heal.

This upcoming week is going to be a busy one. Abigail has appointments every day, so I’m sure the week will fly by!

Earlier today, we went to Barnes & Noble to get out of the apartment for a little while. As thankful as we are to have a place to stay here in Boston, not having much to do at the apartment can certainly get boring, so it was nice to get out.

We are continuing to take things one day at a time and are so thankful for all the encouraging news we’ve received this week. Thank you all so much for your continued prayers,.