Remembering Progress isn't a Straight Line

My heart broke a little yesterday. Tulla cried. That in itself is a sentence that is hard for me to write, because she's always such a happy little girl. Yesterday, she wanted to eat solids, and I couldn't let her. She's too young to know what's going on or understand why her feeding plan has changed. I want so badly for her to be able to eat by mouth like other little ones her age. But right now, it's just not safe.

Tulla doesn't understand how just last week she was excitedly exploring new textures, but now I'm only giving her thinned purees.

Her pulmonologist was back in the office yesterday, and we chatted a bit about Tulla's symptoms. She outlined a new airway clearance plan. The short story is that our everyday plan is going to get a little more complicated.

We had a virtual appointment to go over all the details. Apparently, I asked too many questions to just write it all out in a chat message! I'm not surprised, and I'm grateful for the ability to meet virtually instead of trying to drive two hours away for a 9 am appointment.

Even when she's healthy, she's going to need to do a vest treatment for 20 minutes twice a day through the winter. The vest inflates and pulses, squeezing gently to help move mucus and whatever else is sitting in her lungs. I'm sure there's a much more technical way to explain it, but I'm just the mama, so I'll stick with the simplified version.

When she's sick, we'll have to do two nebulizer treatments and the vest treatment every four hours.

We're starting yet another round of antibiotics. For those of you keeping track, this brings us to our fourth round this year. If she continues to get sick and is unable to clear things, we may switch to a long-standing antibiotic that she will take a few times each week instead.

The question still remains: what is causing her to sound this way? We don't know.

It could be her tracheomalacia, the compression of her trachea. I knew it could cause the wheezing sound, but I also found out it can cause bacteria and mucus to get stuck and lead to further illness.

The injection used to fill the small cleft when Tulla had her scope in June could have worn off and need a permanent repair. This would be a surgical procedure performed by her aerodigestive team. A gap could mean that she's aspirating again, like she was before. That would mean her "safe" swallows aren't really all that safe anymore.

It could be that she aspirated on the new, unfamiliar textures we were beginning to introduce. Or, she could be aspirating on the liquid that comes up when she refluxes. Either one of those can cause things to get into the lungs that don't belong there.

Her pulmonologist mentioned that the aerodigestive team might also want to do another scope if she's still struggling with her breathing by the time we see them in December.

It's such an emotional roller coaster. I truly thought we were at the cusp of turning the corner towards the next step of her being able to eat normally. I had hoped the three week antibiotic course would clear up whatever was stuck in her lungs so that she can breathe easy and we could move on.

On Sunday I had a friend comment on the way she sounded. It was a simple question about if she was feeling okay, or if she usually was a noisy breather. My mind flashed back to when Tulla was only a few months old. I used to get that question all the time, and shrugged it off, not knowing better. The doctors I had seen at the time told me it was her baseline. Then everything with her hospitalization and specialist team happened, and I learned that it isn't normal. She can sound better.

I'm not good at explaining all that concisely in that sort of setting yet, so I wasn't quite sure how to answer. After summarizing everything as best I could, I shrugged and said something to the effect of, "so yes, and no." It doesn't have to be her normal, but it's something we keep coming back to.

This week feels like we're taking steps in the wrong direction. I guess that's the way it goes sometimes. It's never a straight and simple course. Each step does bring new insight, new tools, and new techniques that I never would have learned about otherwise.

For now, we're starting her new airway clearance plan while we wait for the vest to arrive. We're also moving forward with the blended diet through her G-tube in hopes that it will help with her reflux, and she's started the antibiotics. We're hoping that these changes will help her breathe more easily and get healthy again. We'll take it one day at a time, and pray for the best!