End of day report

Another great day of progress all around!

MAJOR HIGHLIGHT: Kim and the kids got to see each other! The kids were pretty overwhelmed at first, but happy tears were quickly followed by excited updates on Christmas presents, friend sleepover stories, and how much they just plain old miss Mommy. The four of us had some time alone to just be together for the first time in 2 1/2 weeks (by far the longest we've ever been apart as a family) and it felt great for us all. They’re excellent lip readers, and they were not stressed, just curious, about all the tubes and machines. It was awesome.

On top of that, Kim got a ton of needed mobility exercise, pushing herself beyond what was being asked of her. She stood on her own for the first time, did some in-place marching, sat up a bunch, and all sorts of other physical therapy stuff. Needless to say, this completely tuckered her out and by night time she was ready to crash. Still, she looks great and her spirits are high.

In more medical-y news, they’re still monitoring the efficacy of the treatment for the antibodies, and will decide in another couple of days whether to run through another round of plasmapheresis. They also did another CT scan today to check in on her lungs and chest cavity, and the analysis of that should be ready tomorrow morning. Based on those results, they may decide to do another lung biopsy to gather more data on her lung condition. The last biopsy was from the inside of the lungs and produced inconclusive results, so they may try one from the outside of the lungs this time which gives them a bit more precision in where they gather the sample. Downside of the outside is it requires general anesthetic and an incision, so they’d only do it that way if they felt it was the best option.

They’ve also identified an atrial flutter, which is kind of like a spontaneous short circuit in the wiring that tells her heart when to beat. This produces some irregular beats, sometimes spontaneously accelerating her hate rate way above normal for short periods. The condition manifests in roughly one third of all lung and/or heart transplant patients and is typically treated with electrical direct-current cardioversion, which is a small shock to the heart to reset its natural pacemaker. This, too, is a procedure that requires general anesthetic (although no incision) and if they do the biopsy, they’ll do both at the same time. She’ll get the cardioversion either way, however, likely tomorrow.

In the time Kim has been in the ICU her meds have changed in some way or the other literally every day. Tonight I asked the nurse to print me a list of all the meds Kim is currently on so that I can do some home research. If I’d guessed prior to seeing the list, I would have said about a dozen different meds (just currently; lots and lots more since December 15th), so I was pretty astounded to see Kim is taking 22 different medications daily as we speak! That’s a pretty intense cocktail, but they pretty much all fall into one of a few categories: Pain / sleep management (everything from Tylenol to morphine), immunosuppressant (quite a few here), infection fighting (here too), cardiovascular assistance (e.g. Sildenafil). Of course they’re super careful and thorough with interactions, dosage, reactions. It’s all pretty amazing.

So the end of a really great day, with an interesting day ahead of us tomorrow. I’ll try to post something a little earlier so Alayne can get some sleep ;)