When Good News and Hard News Collide: Abigail’s Surgery Day

Yesterday, we got to the hospital around 5:30 a.m. for Abigail’s surgery. My dad met us at the hospital to help with Gunnar since children aren’t allowed in the pre-op or post-op areas, which we completely understand.

At 6:00 a.m., we checked into pre-op, and they quickly called us back to start getting Abigail ready for surgery. We spoke with the surgeons one more time and signed the consent forms. Even though it was so early in the morning, Abigail was happy, energized, and ready to take on the day.

At 8:00 a.m., they took Abigail back to the OR. She cried as they took her away from us and rolled her into the operating room. It’s always so hard to watch her cry as she goes into surgery, but one thing I’m so thankful for at Boston Children’s is how wonderful the staff is at getting down to her level and making her feel as comfortable as possible.

This time, Abigail took her baby doll into surgery with her. Her baby dolls are such a comfort to her. She loves being a little mommy and taking care of her babies, so it was sweet knowing she had something familiar and comforting with her.

Once Abigail was in the OR, Devin and I headed to the cafeteria for some breakfast. We tried to keep ourselves busy and distracted, even doing crosswords while we waited.

About an hour into surgery, we got a call from the ENT doctor, Dr. Nuss, who was evaluating Abigail’s airway while she was already under anesthesia. He called to let us know how her airway looked following the reconstruction she had in April.

Unfortunately, he didn’t have the news we were hoping for.

He told us that Abigail’s airway is partially collapsed again. He explained that this could help explain some of the things we’ve been noticing lately, including the frequent moments when Abigail becomes mute and how restless she has been while sleeping.

He told us he would speak with Dr. Rahbar, the surgeon who performed Abigail’s airway reconstruction in April, and have him reach out to us in the next few days. Dr. Rahbar is currently out of town, which is why he wasn’t the one evaluating her airway yesterday.

Obviously, this was not the news Devin and I wanted to hear.

It means that Abigail will likely need another airway surgery, which is a very big surgery in itself. Two types of airway reconstruction surgeries can be considered—an LTR, which is the surgery Abigail had in April, and a CTR. Once we are able to speak with Dr. Rahbar and have a better understanding of what he recommends, I’ll share more about the differences between the two.

After we got off the phone with the ENT doctor, Devin and I felt discouraged. It felt like, in some ways, we were being brought back to square one. We had come to Boston hoping to get Abigail’s jaw reconstruction completed and continue moving forward, so hearing that her airway may be collapsing again was hard to hear.

Throughout the day, we received updates about every 90 minutes on how the jaw reconstruction was progressing. Every time my phone rang, I prayed it wouldn’t be more discouraging news.

While we waited, we spent most of the day with Gunnar and my parents, finding things to do around the hospital and trying to make the hours pass.

Then, around 3:00 p.m., we finally got the call we had been waiting for—Abigail was done with surgery.

We met with the maxillofacial surgeon, who explained that the jaw reconstruction went well. He told us that this should provide Abigail with a more permanent solution for her jaw until she is finished growing and can eventually have her final jaw surgery.

That was such a relief to hear.

After talking with the surgeon, we headed up to the PICU to see Abigail.

Walking into her room and seeing her was hard. Devin and I felt like our hearts were being ripped out of our chests. Her face is extremely swollen, and the incisions from this surgery are much bigger than anything we have seen before.

They had to shave a section of Abigail’s head because one of the incisions extends from her head all the way down toward the bottom of her jaw. She has four incisions in total—two around her jaw, one behind her ear, and one on her rib area where they took the graft.

Seeing our little girl like that is heartbreaking, even though we know these incisions are part of what will hopefully give her a better future.

Yesterday was a day filled with many emotions. We are thankful that her jaw reconstruction went well, but we are also carrying the weight of the news about her airway.

Right now, we are taking things one step at a time.

Please continue to pray for Abigail—for healing, for the swelling and pain to improve, and that this jaw surgery will be successful and truly help her. Please also pray for Devin and me as we prepare for our conversation with Dr. Rahbar about what comes next with her airway.

Most of all, pray for peace. We know we are not in control of what happens next, but we continue to trust that God is with Abigail through every step of this journey.