Lovely Weather We’re Having…

As we had to head to the basement with every siren in a twenty mile radius going off!!!

So – tornado warnings aside – I have to get down a few other medical details for today or else i will forget. If you are lucky enough to be up this late to read it, THANKS!!!!

Anyways – Kendall is definitely showing signs of complete over-exhaustion from our trip since yesterday. Her sats (oxygen levels in her blood/circulating through her system) were crappy for her, while her HR was way too high. Not a good combo (she was 91 over 180’s). I can’t even imagine how high her heart would have had to go in order to actually bring her sats back up. So I hooked her up to the oxygen, cranked it up to 2 liters, and an hour later FINALLY started seeing the numbers improve.

Should have probably just kept her on it continuous for the past 24 hours (or more), but I didn’t, so we get today – which is more of the same crappy numbers, more irritability, zero appetite, not being able to last for an entire therapy session (granted she had three today), and then, the reason for this post, what may or may not have been a seizure. It was weird enough and long enough that it freaked her therapist out, even more so when i said, oh she does that a lot, but that’s the longest i have ever seen her go. i really was kind of ok to just blow this off until the therapist brought it up again at the end of our session. Then i couldn’t stop thinking about it.

if it WAS a seizure, it was an “absence” seizure (petit mal, simple partial). Basically she just “zoned out” – which she does whenever she is super tired, all my kids do, heck even I do – but i can still respond during mine, and the other girls are always quick to snap out of it if you clap/call their names, etc. Kendall’s today lasted a full minute (her therapist thought it was longer), she was completely unresponsive to anything we did during that time, and she was just clearly not THERE during this time.She also had this weird hand flutter at the end of it, and then as soon as we were in the car after therapy she was CONKED out (about twenty minutes after the thing happened).

Regardless, my issue is more that I think we need to get this HR/sat thing under control, even though it is clearly related to her level of exhaustion. I called Dr. A’s office, where they were of course more concerned about the possible seizure, and think she needs to be brought in for an evaluation. Which, yes, she might, but really, it’s besides the point. She doesn’t have a seizure disorder, so whatever it was, it was caused by or triggered by the stress she is under RIGHT NOW, and THAT is what we need to figure out/control. They are calling back first thing in the morning once they see if they can squeeze her in to their schedule, but hopefully i am able to get just a good o2 regimen out of them over the phone which is all i really wanted. I think she just needs to get back to her rhythm, catch up on sleep, get the o2 support for a few solid days, maybe get her b12/carnitine boosted up for a few days, and call it good by this time next week.

UNLESS she is doing all this cause she is brewing an infection somewhere, which would suck, because the longer it goes, the more likely resistant it is to the omnicef, which means the more likely she is to need to go in for IV meds. So hopefully its not that. hopefully it wasn’t a seizure. hopefully all of this is because she just got too worn out last week, too worn out LEARNING HOW TO WALK!!!! i need to make that its own post!

anyways – i know this is a scattered one. i just had to get some of those things down.


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  1. our ILD guru’s point blank said that if a child is needing oxygen and not getting it….and they are prone to seizures…it tends to set them off. So keep reminding yourself oxygen is way better than seizures.

    And be sure they change how they have written your script so the HHC quits trying to torture you guys.

    Love Dug

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