I want to write about something and I just can't seem to, at least not with any flourish or skill. It comes out garbled and contrived, a simple rearranging of everything I've ever written in this space.
We don't know.
It doesn't matter.
I'm cool as a cucumber.
Every bit true and untrue depending on the moment being surveyed.
The truth in this moment is, I've been thinking quite a bit about answers lately. I've had the flutter of hope in my chest and the churn of anxiety in my gut. The truth in this moment is I hope they exist, even if I can't quite allow myself to fully believe it anymore.
Dear Super Fantastic Pediatrician,
I have a little theory and I wanted to get your opinion on it, when you have time. KayTar hasn't had an episode in over 130 days now, by far the longest stretch she's ever had, and none at all since her g-tube insertion. (knock on wood) Their sudden and prolonged absence made me wonder if they could have been nutritionally-induced, so I've been reading here and there, trying to piece things together. Could they have been hypoglycemic episodes?
I thought about all of her possible triggers; travel, excitement, waking early; and a common denominator is that in all of those situations is that it is unlikely she would have eaten anything or drank her Pediasure due to the level of excitement and activity at the time. Of course, they happened when she was ill, too, and her nutrition suffers so much when she is sick. Her glucose levels have always been quite low when we've gone in for dehydration or illness, and she has always had clusters of episodes around those times.
The symptoms seem to fit; altered level of consciousness, seizure, vomiting, unresponsiveness, and lethargy; and hit all of the parts of the episodes that are always present (minus perhaps the seizure activity, though she does have those ocular movements during the episodes). Sometimes she has light sensitivity and headache, too, but headache can be triggered by hypoglycemia. After she comes out of the episode, she is usually ravenous. It is the only time she feels and acts on hunger, the only time the sensation seems to breakthrough for her.
I don't know if there is anything to it or not. She's only had labs run once while she was actively having an episode, but I checked them and it was only a CBC with differential, no chemistries. Right after she had her g-tube inserted, she had that week of almost episodes, remember? She would use the same descriptive language, but it never escalated to the same level and we were able to stop them by adding an additional feed. Thinking of that combined with the sudden lack of episodes, made me wonder! Let me know what you think when you get a chance.
Our pediatrician thinks there might actually be something to this little theory I've cooked up and she's going to run it past the geneticists and get their take on it, too. It has been wiggling, partially formed in the back of my mind for some time, and a conversation with Natalie and subsequent conversations with Josh really solidified it for me. After a little research, I came across the predominate clinical manifestations of hypoglycemia and I was speechless; altered level of consciousness, seizure, vomiting, unresponsiveness, and lethargy...the ever present, major symptoms of her episodes. It has been 140 days without an episode and the only difference is that she is now receiving steady, adequate nutrition. Who knows if there really is anything to the theory? I certainly don't, but I wonder just the same and hope that maybe, just maybe this feeding tube has done more than we'd ever have dreamed possible.
The day Obama was elected, KayTar had a muscle biopsy. Tomorrow he will be inaugurated and we still do not have the results of that biopsy. I can almost see them, swirling in front of me in the future just out of reach. I don't know what they will tell us or even what I hope to learn from them, just something more than we know right now, I suppose. One more piece of this massive, beautiful, delicate puzzle.