Yesterday was supposed to be KayTar's hospital follow-up appointment with endocrinology, however, I had midterms...so I called 3 separate times to cancel it and reschedule. I attempted to get in touch with a Real Person, but it is increasingly more difficult to speak with a real person in the hospital clinics, so I settled for leaving a message each time. After midterms yesterday, I came home long enough to have lunch before heading to the kids' school to help with Book Fair. The phone rang and it was the endocrinologist. She said, "KayTar was supposed to have a follow-up appointment today, is everything okay?" I explained I had tried to cancel it several times, but evidently no one had been checking messages. Halfway into our phone conversation, I got a call on the other line from the scheduler, she had FINALLY check her messages, just a tiny bit too late. It all worked out well, though, because we did the follow-up over the phone and it saved me about 3 hours.
Long story short, 4-5 out of 20 items on KayTar acylcarnitine profile were abnormal and she had a small elevation of her free fatty acids. For those of you who are not native speakers of Medicalese, this indicates that KayTar probably has an underlying metabolic condition. Based on these specific labs, it is likely to be a fatty acid oxidation disorder, but no one knows at this point. In fact, all of this may lead nowhere in the end...as we've found to be the case more often than not. Her lab results received an automatic flagging in the hospital system and the metabolic clinic was alerted, so we'll be following up with them as well. I'm glad they did get a bit of a lead from that horrible, horrible study, though...it makes me feel just a little less terrible about all of it.
Regardless of how the results turn out in the long run, KayTar is doing very well now that we have added cornstarch to her morning feed. All of her numbers have been in the 80-90 range! She was sick recently and although she did get ketotic, she never became hypoglycemic. We're pretty pleased with how well it is working!
Enough medical talk, though. It has been a while since I've done a Quotable KayTar post, so I'd like to leave you with a few of my favorite recent quotes:
"Mrs. M's (the librarian at school) lipgloss makes her lips look so plump! She's like a hot lady!"
At cub scouts on Monday, the scout leader started to do announcements and KayTar piped up, loudly, "Yadda, yadda, yadda..." Josh almost DIED from embarrassment.
When telling my mom that her friends at school don't believe that she got to go to NYC for a photo shoot and be in a magazine, "You know, everyone is SO jealous of me."
While we were in the hospital she said, "I don't really want my skin to get darker, so I'm not going to eat any melons." I asked, "Okay, but why aren't you going to eat melons?" And she said, "Because of the MELANIN!" (she knows melanin is what makes skin darker, and she assumed it came from melons, LOL!)
Last week, KayTar got a conduct mark for kissing a boy in PE. When I asked her why she did it, she said, "Because I was looking for a little romance!" This one takes the cake.
OMG those quotes are hysterical- Kaytar sounds like such a character :)
I love the Kaytar quotes!
That last quote cracks me up! She's such a kick. I'm glad you were able to get some sort of a lead on what's going on. Hope the follow up goes just as well... minus the reschedule drama...
I was actually going to request a Quotable KayTar post from you, so this just pleased me to no end. Love that girl!
where do they learn that "hot" business? oy. my kid says it too. i hate it.
glad that the simple addition of cornstarch is helping.
Post a Comment