Zoe Still Sick
Zoe is still not quite herself. She continues to run a low-grade fever and sleeps a lot. Her eyes have a hollow-ness to them that I couldn't really describe to the doctor. It's just a look she gets when she is sick. We took her to the doctor on Tuesday because we thought maybe she had a urinary tract infection. But her urine was fine. Which is great. But we still don't have an answer as to what is wrong. The doctor said her lungs sound good- so that was great news. So we are going to give her another couple of weeks and if she is still having fevers, we will take some blood cultures and do a chest x-ray.
For now, we just wait.
And watch every little sign that something isn't quite right.
We are not the type to worry. But when our gut tells us something is wrong and we aren't sure what, it worries me. This is not typical for Zoe. Typically it is very obvious that she either has a GI bug or a lung infection.
Zoe's Feeding Study
Good news on the feeding study though (and here I try to focus on the positive because I know how lucky we are that Zoe is doing as well as she is). Zoe did not aspirate on any of the food or liquid during the test. They did mention that she "double swallows" liquids and liquidity food. This means she brings the food under her epiglottis before pushing it forward and swallowing it correctly the second time. She also tends to store food in her mouth when she eats (this we already knew since she will sign "more" even when her cheeks are bulging with food!) Neither of these findings is concerning since it is not causing her to choke or aspirate on her food. We were very glad to hear this. Actually "very glad" does not really capture our relief. We were pretty sure she was not aspirating on feeds but worried what it would mean if she was. And so we are pretty freaking thrilled that we don't have to deal with that right now.
The Next Step
So the next step will be an upper GI test where Zoe will have to drink barium while they take xrays to tract where the liquid goes as she swallows and digests it. This may or may not show us the reflux she is having. Sometimes she refluxes well after a meal, not always during or right after. So it may not show up. We have made the decision to hold off on starting reflux meds since her lungs sound good right now. If she continues to get lung infections, we will again consider putting her on meds if we think she is aspirating on her reflux.
Thanks for the Support
Anyway, thanks to all of those who read this blog and keep us in your thoughts. I appreciate that I may type things that not all people want to read at times. But it is important for me to have somewhere where I can express what I am feeling. Gavin and I don't have many friends and our families live far away. And I have a feeling my colleagues want to scream sometimes when I am talking about Zoe, yet again. And so it is nice to be able to type whatever I want and people can read it or leave it as they want.
For now, I am going to pour myself a bowel of cereal (my comfort food). Gavin is working tonight. Zoe was so exhausted from her day at school that she fell asleep at 5:30 without eating any dinner.
Only she knows what her body needs.
And so I will creep into her room and watch her sleep.
Count her breaths.
And try not to focus on the blue hollows circling her beautiful eyes.
3 months ago