Surgery Part 1

Wow what a day. Lily spent almost 13 hours in the operating room. I got to the hospital at 6am and was able to get some snuggles in before they took her to surgery at 7:30. Two surgeons, an anesthesiologist, and a nurse practitioner came to talk about the surgery shortly before she left. The first part of the surgery was completing an assessment of her anatomy. They did a bronchoscopy and some imaging to create a game plan for her surgery process. There were several different ways it could have gone. What they found was that her gap was a little bigger than we thought. It was closer to 6cm versus the 4 to 5cm our surgeon saw at her last gap study a couple months ago. They also found she has tracheomalacia. They explained to me before surgery that this is very common in kids with EA, and that if they found she had it, they could fix it most likely during the surgery. And that is what happened. Essentially, it means her trachea was loose or floppy, and it needed to be sutured to her spine in order to keep it from collapsing when she coughs. It's hard to explain, I'm sorry. So they sutured the trachea in two different places to her spine. The surgeon said that will most likely fix the problem. Sometimes they have to go back in a second time to further fix it. Boston Children's Hospital website for Esophageal Atresia has some really informative videos for anyone who is interested in learning more of the details.

After securing her airway, they put sutures on both ends of her esophagus. The sutures are outside of her incisions in two places. One for the upper esophagus and one for the lower esophagus. Every couple days, they will increase the tension on the sutures in order to strech both ends until they are close enough to attach. It usually takes about 2 weeks. Unfortunately, that means she will be intubated and sedated for that whole time. It would be very bad if she was awake and pulling on the sutures. After the two ends are close enough, they will take her back to the OR to attach the two ends, and then they can start weaning her off of the sedation. They will monitor the progress of the stretching by xray.
Sorry if this is very confusing. I'm a little overwhelmed myself with all the information we received today. We'll continue to update the blog with her progress. She's back in her room finally after 13 hours and doing well. The surgeons were very pleased with how everything went. They said the esophageal tissue was healthy. Thanks for all the prayers, texts, and emails of support.

Before surgery 

From a booklet I got today

Family walk

Rose loves her sisters 😊