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 She said that KayTar was acting a little strangely, complaining of a headache, being a little withdrawn and not KayTar-like, and talking about being "spinny" (which is the big clue word for her episodes).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!
she is just the most beautiful little mystery
Oh, I was holding my breath the whole time I am reading this. You are so graceful under all this worry. I hope one day it all makes sense and you can put it behind you.
Poor little princess has so much on her plate for such a little girl!
I'm glad to hear the nighttime puking has stopped for now... Hoping it lasts! That has always freaked me out- when I find my girl throwing up in the middle of the night in bed, all I can ever think is "what if I hadn't heard her/ checked on her? Would she have been ok... or?"... So I can't even imagine what it would be like to have it happening so often. You are so strong to take this all in stride, keep a level head, and handle things as you do. Bravo, Mama :)
Well, no one can say your life is not full of intrigue and mysteries, Kyla!
That's the scary thing about these kids. They have gone through so much that they don't complain about the pain that would knock most of us out. I've learned that if it gets to the point that AJ starts mentioning pain or seems a little "off", it's time to just go to the emergency room. Kaytar's an amazing kid!
Doesn't one of her teachers have an EpiPen? One of the kids in our class has peanut allergies, and there is a Pen in the classroom as well as the nurse's office...
flutter is right--she is a lovely little mystery that one is.
she has so much on her shoulders, poor little princess.
I am sure you have already addressed this but shouldn't the teacher have access to an epipen AND to an inhaler. There has to be somewhere in her room where they can be locked away from the other children, but I would think they would want one close by "just in case".
It is so odd to me that reflux and asthma are linked. When my son was an infant he was diagnosed with reflux & asthma and they told us they were directly tied. Luckily he outgrew both things. I hope the "magic pharmacist" medicine works for Kaytar.
I came accross your blog through another one i was reading and even though I will never meet you or your precious daughter I read about her weekly and keep you in my thoughts and prayers.
I;m sorry about the worry--it probably will never quite go away, will it. T.'s had a handful of "almost episodes" in the time since she's been off the Topamax. They've never become full-blown episodes, but she's been teetering on the edge a few times. Her neuro thought it might be her growing body trying to figure out what to do with the episodes--recalibrate itself to deal with them in different ways.
She DOES keep you hopping! But, at least it seems you got the reflux solved. That's one thing down.
Well, isn't that just weird . . . I'm glad the puking has stopped though!
reflux is a beast...glad you found away to beat it!
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