Pulmonology Appointment & Eating

Today we had an appointment with Ainsley's pulmonologist. He was the doctor who was instrumental in getting the Nissen Fundoplication to protect her lungs from aspirating stomach content. He was brought onto Ainsley's team in August. And agreed with Cincinnati's finding of bronchiectasis based on the chest CT they did there.

Today I asked about the bronchiectasis and whether a second chest CT is warranted. Ainsley has never had the classic symptoms of bronchiectasis. No respiratory infections. No mucous that just sits in the lungs. No unproductive cough. She did cough a lot but there were always secretions. The doctors dismissed it as typical trach adjustment that she would grow out of. Now that she is doing so well after her fundo she is wearing her PMV all the time. And her secretions and therefore the coughing have really minimized. When she is not sick we are suctioning only 3-4 times a day max. It is a HUGE change. She is even wearing her cap for up to 5 minutes at a time. He was really pleased.

In addition she has started taking more of an interest in eating. Still just tastes but she is again opening her mouth willingly. And she even PUT A CHEETO IN HER MOUTH during therapy on Tuesday. This was her first attempt at putting regular food in her mouth ever. Normally it's just puree or liquids. Her therapist was wowed. Even though it was really just a crumb it was huge progress for Ainsley. So I am concerned that she could be aspirating small amounts now that her airway swelling has improved some. And if she does indeed have bronchiectasis that could be damaging to her already damaged lungs.

I would love to have another chest CT with the hope that somehow the damage is gone so that I don't have to worry about it getting worse. Of course aspiration is still not good and should be prevented but my level of concerned is heightened due to this diagnosis. I'm not even certain that she is not aspirating her saliva. Dr. D. said that if we really want it we could do the chest CT, but he'd rather put it off and just have it on our radar for the next year. We don't want to expose her to radiation unnecessarily and it's likely she'd need to be put under anesthesia so she's still enough to get a good image. So I can live with that.

He did order a repeat swallow study. I feel it's time. Lately I have not really seen trace amounts of food/drink in her secretions when she eats but we need to know for sure. Especially if she is going to be eating a few bites of food here and there everyday. So that will likely happen soon.

It will be great to know if she is safe to eat now that her airway is opening up.


Here she is "eating" a Cheeto. When your kid won't eat you'll feed them anything.


Happy as can be with a Cheeto in one hand and a Caesar Snapea in the other.