The aerodigestive team's triple scope

If you've made it this far, or if you're just joining us now, welcome and thank you for being a part of Team Tulla. I've gone through her history from birth to seven months. It's wild how much can happen and how much things can change.

I've been juggling appointments, sometimes several a week, trying to figure out what needs to be done. The time has finally come for her to meet with the aerodigestive team for her triple scope. Just to refresh your memory, the second time Tulla was admitted to the hospital for oxygen issues, she had a swallow study which revealed significant aspiration. It was enough that the speech pathologist determined it was unsafe for her to continue eating orally.

The NG tube was heartbreaking to watch them put in, but the results have been nothing short of miraculous. She's back on the growth curve and the healthiest she's been since birth. They were unable to perform the scope at that time because she also had a cold and couldn't safely go under sedation.

Now, six weeks later, we are headed back those three and a half hours to the children's hospital for the aerodigestive team to figure out what is going on inside Tulla's body. We have all the specialties - ENT for her mouth and throat, pulmonology for the airway, and GI for the stomach. Speech pathology will also weigh in, and of course, there is an anesthesiologist involved as well.

I won't bore you with the mind-numbing list of technical names for the procedures they would perform while she was under, but it is enough that the process will take almost four hours.

Four hours of sitting in a small recovery room without my baby.

Four hours of Tulla getting scoped by cameras, both soft and rigid.

Four hours of scraping and collecting biopsies.

Four hours wondering if this will finally reveal any answers.

So I waited. Thank goodness I wasn't alone. My mom had traveled with me to help and keep me company since my husband had to work. I would have gone crazy in the quietness otherwise.

Slowly, each specialist stopped in with an update after they had finished their portion.

Pulmonology revealed that Tulla has a small left bronchus tube, the one that connects her esophagus to her left lung, and that it was very inflamed. Things collect in there and she isn't good at coughing to clear them.

ENT told me she had a small notch at the top of her voicebox where a wall structure should have been. This potentially explained one of the areas we had seen aspiration during the swallow study. They added a filler to see if closing that gap would help.

GI found that there is stomach tissue inside Tulla's throat, which is extremely rare. They see it less than 2% of the time, and most of the time it's stumbled upon when looking for other issues. It's harmless, but can cause some acid reflux.

Other than that, everything looked good structurally.

My first thought was thank you Jesus. My second thought was, what does that mean for her? She still clearly has issues with breathing and swallowing, so what would the next step be? I didn't know, but I was ready to find out.

I saw my favorite speech pathologist, the one who finally got her the swallow study last time, and talked about a plan. They wanted another swallow study. In order for it to be accurate, Tulla would have to practice first, or we were setting her up to fail. However, it wasn't safe for her to eat by mouth. We came up with a plan for Tulla to practice with a spoon dipped in milk so that she got the taste, and could work on the muscles without as much risk of aspiration. If that went well, we would upgrade to a thinned puree.

If her breathing didn't get noisy and scary again, we would do the swallow study in a few weeks after she had recovered from her scopes. There was a chance she could start on solid foods. Even though we still had more questions to answer, it felt like we were taking steps in the right direction.