Watching and Waiting

Do you ever have those days when your mind races a thousand miles an hour when you weigh all the variables that could impact the outcomes?

That's where I'm at. And it's exhausting. I've started this post a couple times... but it hasn't seemed quite right. Up until now, I've written about past experiences. This is the first time I've made a post in real time, which makes it hard to know what to say and organize my thoughts.

Poor Tulla is teething like crazy, so she's a drooly mess. She's been spitting up more often, which is a new development. I have to keep an eye on it, because she still aspirates on thin liquids, and spit-up is considered a thin liquid. Even though she doesn't take a bottle, this is still a risk for her. Since she aspirates silently, I have to watch for other cues, such as louder breathing and coughing.

I also noticed her nose was a little runny the other day. With any other one of my children, I wouldn't have batted an eye at it. A runny nose is just a runny nose. But with Tulla, a cold isn't necessarily just a cold. Since her one lung has a smaller bronchus tube, congestion can get stuck in there. It can easily turn into bronchitis, which was part of her earlier oxygen problems.

Her oxygen levels have been stable, which is a huge source of comfort. I hate to be the person who over-analyzes things and freaks out over nothing, so I haven't rushed her into the walk-in or anything. It would make me feel silly if they said she was fine and sent me home. Instead, I've just been watching and waiting.

Debating if something is happening, or if I'm overreacting.

Then there's the smoke from the wildfires in Canada. That's difficult for people with asthma, and it's also hard on little lungs. Tulla already has two inhalers, so we're keeping her inside as much as possible.

We've also been practicing eating almost every day with thinned purees. They want me to practice with her two to three times a day, but with how crazy my life is with all my kiddos, I'm lucky if I get a session in every day.

So I think about all these factors - teething, spitting up, runny nose, wildfire smoke, and eating. They run around in circles in my head day and night. I knew something wasn't quite right last week, but I didn't have anything concrete to go on.

It was just a feeling I had. My mom has always encouraged me to listen to my gut. I might do so reluctantly sometimes, but I've learned that that little voice is usually right, especially when it comes to Tulla.

Midway through the week, I noticed her breathing was getting a little louder, so we started her "sick" plan. This involves extra inhaler puffs and a nebulizer/clapping treatment twice a day. (Because I definitely have time for that with everything else going on.) Yesterday, she started coughing again. Her cough and loud breathing had been gone for weeks.

Hearing them again is triggering for me. It makes me worried that I'm going to end up back in the children's hospital. But that's better than not going in and denying her the care she needs. It's the start of a mental struggle and spiral that I've gone through before. It takes everything I have not to fall back into it.

With any of my other kids I would have gone to the pediatrician first. Now, I really do like her doctor, but I don't feel like he always knows what's best for Tulla. He has dismissed some of the symptoms she was dealing with in the past. When she was only a few months old I knew she was sick and something was wrong after the first time her Owlet monitor alarmed overnight. He thought it was something viral since it wasn't pneumonia (she sounded horrible), so he sent us on our way. If we had caught it then, it might not have developed into such a horrible infection.

Suffice it to say, my confidence in him has been shaken. So this time I went to Tulla's team at the children's hospital. Her sweet nurse immediately validated my concerns, even though I accidentally called the gastroenterology (GI) nurse instead of the pulmonology side.

It's such a different experience from the typical, "she seems healthy, so she's most likely fine and you can go home" that I brace myself for. The first comment she made was "She's got a lot going on!" Yes! Yes, she does. Thank you for seeing me. It was a relief.

She talked me through each potential concern on my list, ruled out the wildfire smoke and eating, and now it's probably something viral. I'm supposed to keep an eye out for the development of a pattern with her spitting up. We may need to consult GI and adjust her feeding schedule if it does, since it's potentially dangerous for her.

Tulla's pulmonologist is the next person I'm waiting to hear from. Starting her sick plan of the nebulizer treatment and clapping therapy in the meantime is the right call.

She may need to be examined by her pediatrician or go to the pulmonology clinic. For this weekend, we watch and wait. We monitor and make sure nothing gets worse. We're already one week into her having symptoms, so if they continue for another week, she'll probably need to be put on antibiotics.

I do feel lucky that things aren't a lot worse. If antibiotics are the only thing that needs to get added, we're doing okay. We are much better prepared for a new illness with the home oxygen, nebulizer treatments, and safe feeding compared to where we were a few months ago.

I think it's crazy that I could tell before there were any visible symptoms that something was up with her. It just leads me to encourage other parents out there - trust your gut. Find a good support system that spurs you on. Above all, never be afraid to contact your doctor, and get second opinions when you know something is wrong, even if you don't know what it is.

Right now, we're stable and prepared, so I'm praising God and holding on to that.