Two New Fistulas

Audrey's esophagus as lit by barium. You can see the connection point, the shelf where food gets stuck, the changes in direction, and that subtle black webbing on the left side is where her fistulas were passing barium into the lungs in response to Dr Manfredi squirting barium directly into them. 3 days later, she's still finishing coughing out that stuff. We need to know if food and drink are quietly causing her lung damage over time, or if the fistulas are remaining closed when she eats. That will determine the urgency for the resection surgery, whether we need to do it as soon as possible or can wait until June like I'd prefer due to my responsibilities at home.

Be Still and Know

I've re-learned a valuable truth this week. Sometimes, the healthiest thing for a worrier is for things every now and then TO go just as wrong as they worry it will, and then see that the world keeps on turning and things will be OK. On Thursday afternoon we were supposed to have an important test at the hospital, but the trains broke down for a while during the time we needed to travel. I called a cab and was told they'd be there in 15 minutes, but it never came. A second cab also did not come. A third cab, from a different company, offered us a ride and then changed his mind when we were half loaded, because I only use a card instead of cash. The swallow study had to be canceled, but luckily, the world kept turning.

When I left my house in Utah, I left a meticulous list of each day's responsibilities for my oldest kids, with boxes to check off to help them keep track and reminders for things like practicing their instrument. Arguably the most important was Eden's sweet harp teacher coming to our home on Friday to give her lesson in lieu of us coming to her--a valuable opportunity also for her to help Eden learn to tune and repair our harp. Eden woke up, got herself ready, practiced her instrument, went to the back room for something, got sidetracked, and missed the knock at the door. The harp teacher went home. Hearing about this has again, for many reasons, made my worry level for my oldest daughter spike above that for my youngest. But, the world kept turning.

Our long day at the hospital yesterday was very informative. Audrey has not one, but TWO fistulas that have grown connecting her esophagus to her lungs. The shape of her esophagus at the connection site is the likely culprit for food getting stuck so often; there's a distinct bend in the road and a wide shelf at the point of the angle. No dilating was done because of the risk of widening or rupturing the fistulas. The resection surgery we sidestepped in January needs to go back on the schedule, and we're waiting on the results of a chest x-ray to determine how urgent the surgery is. They are looking for signs of food debris in the lungs which could lead to permanent lung damage. Audrey hasn't had any issues with aspiration pneumonia yet from the fistulas, knock on wood, and since the number of moving parts in my family that hinge on my being home right now is unreal, my preference is to put off surgery until school's out for the summer again. I also learned that she still does not have full function in her vocal chords, meaning we were right to worry when she coughs so often while eating. Luckily they were able to do the modified barium swallow test we'd missed on Thursday, after Audrey was awake enough from anesthesia, and that was helped by the fact she hadn't been dilated so her throat wasn't too sore. Those amazing ladies in the feeding team had Audrey feeling like a movie star as they closely recorded her swallowing function. She ate grapes, watermelon, chips, applesauce, and drank an entire 2oz barium-laced apple juice box, and every single swallow was ABSOLUTELY PERFECT. Considering 3 years ago she'd been aspirating with every swallow, and those vocal chords aren't closing all the way, this news was a gargantuan relief.

We left the hospital in the beautiful sunlight, took a train and walked through the public gardens full of pink flowers, listened to my favorite street musician play his Spanish guitar, went to the playground and splashed together in the water until sunset. Because we had been prepared to stay overnight at the hospital, I even had a dry change of Audrey's clothes for this spontaneous adventure. It was wonderful. So yes, she needs major surgery again. And yes, the future is uncertain as to how long that will be and when, and I pray we will find ways to keep the family healthy in every sense during that time. Yes, I'm OK. More than OK. And the world is still turning.