Not much to report!

Today was just another wait day. We can't do much to speed up the rate at which his tubes stop draining, so it was more of us sitting around and keeping a toddler and four-year-old occupied all day!

We did go on a couple walks around the unit, both under his own power and in a wheelchair (and a wagon, later on). Yesterday he actually did two full laps, walking, but today he didn't quite make it a full one. I think his tubes were making him a little sore, because each time he stood, he'd hunch over, like he was trying not to let them pull so hard. We've kept on top of the Tylenol for that.

Still working on the sodium. I asked about the actual numbers today, and it turns out that at his lowest, Brandt's level was 128 (don't know the actual unit of measurement). Normal is 135, and critical (where seizures could start happening) is 125. So he was getting pretty close there! Now he's up to 131, and we're hoping to get that a little higher still, with his labs in the morning. We're still pushing the super disgusting sodium supplement, as well as Gatorade. Although, we found out today that milk has higher sodium levels than Gatorade. Go figure. And better still, he'll actually drink milk!  He's not a fan of sweet drinks, and will boycott his sippy cup when there's anything but milk or water in it. So in our efforts to get more sodium and electrolytes into him, he was running low on liquids. Yesterday, I started letting him have about as much milk as he'll drink, and shockingly enough, that's when his sodium levels started to rise!

We did get some exciting news, though...we might get to remove his drain tubes tomorrow! The general rule of thumb is 2mLs per kilo (2x15=30) per tube (30x2=60) per 24 hour period. Two days ago it was at 82, yesterday was 38! We technically could have pulled his right one today, but they decided to save it and do both tomorrow, because they do drug him up a little for the procedure, even though it is a bedside thing. As always, though, I'll believe it when I see it. Things like this have a fun habit of moving the goal post an extra ten feet just when things start to look promising. I've turned into something of a cynic, I think.


We're looking forward to having these tubes gone, though...the discomfort associated with them is generally the culprit behind appetite loss, which has been driving me crazy for a while now. For example, tonight for dinner, he had a handful of French fries (yay sodium!) and a bite of rice. Breakfast was a nibble of bacon and a couple bites of toast, and lunch was two bites of peaches and one of a grilled cheese. No wonder he's lost two pounds.