last week was a toughie. we were flying so high after Imogen’s quick initial discharge that watching her falter and be readmitted felt incredibly defeating. alright, we thought, we know there is no “done” with HLHS, but couldn’t we at least get more than a weekend to pretend otherwise? beyond that, it ended up being one of those admissions where we heard “she can probably go home tomorrow” for a few days running. annoying.
but. BUT. get out she did, and even in time for another fun weekend at home. 5 days, 4 nights–it was not exactly a Caribbean cruise, but if last week ends up being the low point of our Fontan experience, I’ll take it. I really did try to remind myself of all the good parts last week. She was not in the ICU, she did not have chest tubes, she was not on a ventilator, not even on oxygen for most of the visit. the kids–girl and brothers–held strong. we survived the pope-mageddon traffic to and from the hospital, we had lots of support from family and friends, and I even got out of jury duty (by which I mean I completely forgot about it and missed reporting. whoops. they’ll either arrest me or make me fill out some paperwork and come back another day).
when life gives you lemons, you play Guess Who in a wagon.
there were two things holding Imogen back last week: the first, fluid in and around her lungs and heart, is a common post-Fontan complication, and the IV doses of diuretic helped immensely. Unfortunately, an x-ray yesterday showed the fluid already beginning to reaccumulate. Since it is not bothering her too badly yet, the doctors added an additional oral diuretic to help the fluid move along. Judging from the volume of her diapers after the doses we’ve given–it’s working. We’ll go back on Thursday for more xrays and bloodwork to make sure the fluid is coming off and electrolytes are not going too wacky.
last week’s other excitement was the reappearance of some unusual heart rhythms. arrhythmias feel like a BBC miniseries playing in the background of all of Imogen’s other heart adventures–the plot advances slowly, and while most people don’t really care, a few folks get very excited over it all.
I’ll preface the following picture by saying that I generally try hard not to post images that glorify the “medicalness” of this experience. This is a story about Imogen (and her family) and not a slideshow of all the crazy/intense/uncomfortable/gruesome things she goes through. even though she does. that said, I thought this one fell into the “too silly not to share” category–a picture of her with three different sets of electrodes running, when a few different teams decided they needed her telemetry all at once. don’t worry, they’re just stickers:
If you think there is something really disturbing about this picture, you are right: this visit, Imogen discovered Barney on Netflix. and she’s hooked. sigh.
With respect to the arrhythmias, the immediate verdict seems to be the same as it has been every other time these have cropped up: her heart is different, so sometimes it beats differently. Not to mention she’s still only a few weeks out from surgery. It’s not uncommon for kids to need pacemakers within ten or twenty years after a Fontan, so that could be in Imogen’s future at some point, but it’s in no way under consideration right now. To be continued, I suppose. . . fade to credits, cue the string quartet.
So, last week’s adventures having come to their close, we’re back to carrying on Imogen’s recovery at home. We’re still trying to get the vomiting under control, but it’s getting better. There’s lots of resting and book reading and playing. We’ll start back to speech and physical therapy soon. She has some activity restrictions, but she spent about 20 minutes this morning kicking a soccer ball around the yard so it’s nothing too bad. We’re shuffling through follow up appointments and managing a robust medication schedule (like the good old days!), but I’m hopeful many of the drugs will come off quickly this time.
The hardest pill to swallow is not a pill at all: it’s a new regime of twice-daily injections of an anticoagulant. She’ll stay on it for at least the next six months to help prevent the formation of blood clots in her new Fontan circuit. Because, hey, all two year olds love shots (and all their parents love giving them)! Ouch. Still, I know that home injections are part of the management plan for many conditions, and we’ll get through this, too. Anyone who’s been in this boat with their kids and has tips or stories to share, please do.
Well, that post got long–all the news that’s fit to print! The next post will contain some information about the Children’s National 5k in which I plan to participate this weekend (unless the jury police catch me first). Because after three weeks sitting around the hospital eating twizzlers–a warm but bloated thanks to all the donors!–I could use an excuse to exercise.