A mixed day, as most are. Jordan was crabby, screamy, & generally miserable today. We don't know why, but really wish we did. Was she in pain? Uncomfortable? Were the screams associated with seizures that we just aren't seeing yet? (High-pitched screams are a general neurological marker for seizure activity, but don't mean anything in and of themselves.) We just wish we knew. Ibuprofen didn't help, but holding her did. Devon pulled out all the stops: the Nojo Sling, The Baby Bjorn, even the MaxiMom carrier (which just arrived yesterday from eBay). We'll find something for each of us to tote her around in eventually.
Today's good news: Despite her crabbiness, Jordan was so "stable" we can hardly believe it. Of course the lab wasn't open, and the orders were a bit screwed up, but the nurses on the Peds floor managed to get her blood pressure (as usual), and her blood for a CBC and BMP. White blood cells were down to 10,000, sodium was up to 141, and potassium is holding steady at 3.5. The table salt seems to be doing the trick for her and her blood pressure is handling it fine. Yippee! Tuesday will be a big follow-up day, with another round of labs (to make sure we aren't going overboard on the table salt), physical therapy, and then another ~1-hour EEG to see how her brain activity is doing after one week off the ACTH. Still no sign of seizures (knock on wood).
We're still trying to dig out from our unplanned week away. My list is finally getting shorter, but I still have a ways to go to get "caught up." Avery got a hair cut (finally), and Jordan's drawers and medical files & supplies are finally sorted, filed, & organized. A couple of projects I started in the hospital are waiting to be tied up, but I'm getting there. Honestly, I don't know why I always think that a stay in the hospital will be like a spa treatment: I'll catch up on my reading, sort though all my photos, sleep all night and nap as I want all day while Jordan is fed, changed, medicated, & monitored my a loving team of nurses & doctors. Somehow it NEVER turns out like that! Not even close! It's often a battle to make sure she gets the medicine & monitoring she needs, and forget the feedings & changes. Then there's the added stress of not being at home to take care of Avery & everything else on the home front. Oh well, I can dream, can't I?
Devon is trying to dig out, too. He'll be down in the basement "laboring" away tomorrow as though it's a regular work day. We're still so grateful that he can be flexible with his work, and when he can't, his company is completely understanding.
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