When I was in Austin a few weeks ago to testify in front of the Senate Finance Committee, I received a frightening call from KayTar's teacher. She said that KayTar was acting a little strangely, complaining of a headache, being a little withdrawn and not KayTar-like, and talking about being "spinny" (which is the big clue word for her episodes). I was four hours away from home and my heart nearly stopped as I listened to her teacher. I told her that I would have my mom come and get her, because I wasn't there to judge her condition for myself and I'd rather be safe than sorry. I called my mom, who immediately went to pick her up, and I called Josh to inform him of what was happening. In the end, it turned out to be nothing. KayTar maybe had a little headache and chose an odd time to tell her teacher about her previous episode...going to see the butterflies and getting all spinny. My stomach was just in knots, though, I've never not been with her during an episode and the thought of being far away and unable to comfort her or keep and eye on her was really unbearable.
The following Monday, right as I was about to leave to pick KayTar up from school, I received another phone call from her teacher. She said that when KayTar was in her inclusion class she started telling the teacher, "I can't breathe. I need air. I can't breathe!" So they sent her back to her regular teacher who took her to the nurse. The nurse was not there, so she called me. I went to the school immediately and found KayTar in the nurse's office with her teacher. KayTar said, "Ms. M gave me my Albuterol, but she put the blue thing (inhaler) right in my mouth (instead of using the spacer mask)!" Evidently, they couldn't locate her spacer mask. Regardless, she seemed to be breathing okay by the time I got there. When I put her into her carseat, I gave her Albuterol (through the spacer) from the med bag I keep in the car and we drove home. She seemed fine to me, but continued to tell me that when she was in Ms. G's class she couldn't breathe. I'm not sure what happened or why, but it was a little unsettling...especially the fact that the nurse wasn't present and her medications weren't easily accessed. What if she has an allergic reaction and needs her Epipen and the nurse is off-campus? Yikes.
A few weeks ago I mentioned that we thought KayTar's lifelong history of nighttime vomiting and asthma exacerbations might be tied to reflux. We were unable to give her the solutabs because they clog her g-button, but we were able to get it specially compounded into a liquid, thanks to our magical pharmacist. We started her on it three weeks ago and (knock on wood) have NOT had any nighttime vomiting or asthma problems, even with this latest illness. She may have had not-so-silent silent reflux for years! She never indicated any sort of reflux pain, so it wasn't on our radar. It all seemed cough-mediated and she has always had quite the reputation as a puker. This new trend of NOT cleaning up vomit at least once a week has been kind of wonderful. I wish we had figured it out all those years ago!