Tenuously still at home

Quick trip to the kids
museum on Thursday

I know I haven't been the greatest at blogging since we've been home. Housewife-ing takes up most of my time these days. So the last time I left off, we were waiting on an appointment last Friday to tell us whether or not we were going to have to go back to Seattle to take care of the fluid around Brandt's right lung. Spoiler: we didn't go. But there's more to the story than that.

After getting that news on Monday, I spend the entire week scrambling frantically to find some sort of childcare for Wade that could potentially last a few weeks, if need be. The solution we ended up with was a surprising one...a combination of Montessori preschool in the mornings and a family friend watching him in the afternoons until Tanner got off work.

Both of these were very unlikely options for multiple reasons. First and foremost, I've been planning to steer clear of preschools all together, as part of my homeschool plan, but after seeing how much he liked the social aspect of it when we were at the Ron-Don, I've been changing my tune on it a little. On top of that, the teacher there has a niece that is followed by Dr. Ruggerie as well, so she knows all about the ways that heart babies turn the world upside-down. Because of that, she's bent over backwards to make this work for everyone, condensing her interview/tour/trial phase into about 48 hours instead of the week or so it usually takes. Even though we didn't go to Seattle last weekend, we plan to keep him enrolled through the end of the "semester" because he seems to love it so much!

Turns out, Brandt has figured out how to take pictures of
actual things on my phone. There's probably 15 of these
on my phone at the moment...

Then the friend that stepped up to watch him in the afternoons was, until recently, a career woman, working 60ish hours a week! Just a couple weeks ago, she quit (heroically, in my opinion) and is enjoying pseudo-retirement for the time being. Talk about timing! She and Wade get along wonderfully, so it was a good fit all around.

So we got that all figured out just in time for our appointment on Friday morning. It ended up taking a few hours to get ahold of everyone that needed to be consulted, but the final opinion was that despite the fact that he still has quite a bit of fluid on his lung, it wasn't worth a flight. Seattle doesn't want to jump right in to putting in a new drain, in part because it's miserable to try to keep them attached to a two-year-old, and part because he's been doing okay without it thus far. All they would do differently is put in an IV for his diuretics to be administered that way, because it works a little better through the bloodstream. As far as that's concerned, though, his current oral dose gets enough of a reaction to overflow a size six diaper, so no one is concerned on that front.


However. We're not in the clear just yet. We're still watching his sodium levels...had another lab draw today that was far from the highlight of the afternoon...and are keeping an eye on his X-rays. The plan right now is to reevaluate week by week, with an X-ray every Friday, followed by an appointment with Ruggerie and phone consult with Seattle. Each Friday will bring the chance of flying to Seattle again, but thankfully, it won't be a spur-of-the-moment thing. If anything warrants a trip, they'll give us a couple days to get our life here packaged up a bit before we leave. That alone takes a lot of stress off my shoulders, not having to be packed up "just in case" every weekend.

#sweatyselfie
Yuck.

Anyway, that's the news for now. Home, but tenuously, and I have no idea how long this phase will last. Until the fluid decides to evacuate, essentially. For now, I have kids that need bathed and put to bed so that I can follow suit. Between preschool drop off and pick up, an hour at the gym, and two doctor appointments, today was long, and I'm exhausted to the point of falling asleep on my feet from herding cats all day.





One last quick note (since Tanner just took over bath time): This is Ruggerie... I don't think I've ever gotten a picture of him before! After Brandt pitched a fit over being back in the office on Friday...too familiar and reminiscent of the hospital, I think...Ruggerie has been determined to win back his trust, because he just adores these boys. He got far enough today to get a hug out of Brandt, which seemed to make his day. We're incredibly lucky to have such a great doctor at the head of everything here.