the news in brief.

Wednesday afternoon, a committee of Imogen’s doctors and specialists met to discuss her case and officially recommend that she be listed for a heart transplant.  This decision comes as a result of Imogen’s protein-losing enteropathy (PLE), a serious and poorly-understood complication of her Fontan circulation, which first appeared last May.  While Imogen is doing fairly well at the moment (with the support of a boatload of medication), her doctors don’t think it will last–and heart transplant is the best avenue we have left.
If you see us frequently, we may have talked about this news in person; it’s a turning point Zach and I have been dreading for some time now, even as we’ve been preparing for it by working through the testing and paperwork necessary for listing.  But if you mostly stay in touch with Imogen through this space, I imagine this news comes as a surprise, because I’ve really struggled to write about all the changes in her health over the past several months.  Put otherwise: the idea of Imogen needing a new heart–after all we’ve been through to save the one she has–left me speechless.

But we’re here now, and there’s no way out but through.  I’ve been feeling the urge to get this experience down on paper, so I’ll try my best to share details of what’s been going on in a couple of subsequent posts–for those who are curious, for those who may also be heart parents and want to compare notes, and of course for my favorite audience, Future Imogen (hi imogen!).  

I’ll reiterate that, for now, Imogen is doing OK in terms of her day-to-day life: going to preschool, playing with friends, pestering her brothers.  We are lucky that we’ve been able to come to this decision at a leisurely pace compared to many heart failure patients, and that we have time to wait for a new heart–the best heart EVER–to find her.  We really don’t know exactly how the next months and years are going to unfold, but we are ready to take a deep breath and begin.  Again.

fastest cath ever!

Achievement Unlocked: Same-Day Discharge.

I’m happy to say that imogen is back home and resting after her cath this morning.  Catheterizations are always potentially “outpatient” procedures, but I don’t think we’ve ever escaped at least overnight observation (or, as has also been the case, the cath came in the middle of an inpatient stay for some other reason).  But the stars aligned today : no interventions, access through a vein rather than an artery meant her lay-flat time after the operation was only four hours, and she handled the anesthesia beautifully.  Thank goodness, and thank you all for your prayers and supportive thoughts for imogen today.  

cath, again.

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hi everyone,

imogen is headed back to the cath lab tomorrow for another insider look at her heart. we don’t expect any interventions like angioplasty or closing collaterals, just measuring and testing pressures within the system. I’ve lost count along the way, but I think this is something like her seventh career heart catheterization, which feels like it should come with a trophy or at least free parking in the hospital garage. We probably won’t get that lucky, but at least the cath-prep routine is a bit like riding a bike at this point: pre-op exams; stop aspirin; switch to clear fluids and then NPO; post to blog and ask you all for your good thoughts.

I’ve been meaning to dust off the blog for a while now, anyhow, since the past six months have brought some pretty monumental shifts in Imogen’s medical outlook.  more on that soon.  but for tonight, let’s just say that I have the future of healthcare in this country very much on my mind, and I hope that whatever your political stripe, you’ll urge your representatives to ensure that any replacement for the ACA maintain prohibitions against lifetime caps on health insurance coverage and against insurers rejecting those with preexisting conditions.  It’s hugely important for our family, and essential for so many others.

we’ll update tomorrow when she’s out of cath–thank you, as always, for having our back on this journey.

out of cath.

Imogen came through cath well today. She also got a bonus procedure: while they had her under anesthesia, the pulmonary team decided to take a look in her lungs–they performed a bronchoscopy and took some samples to analyze in lab.

Imogen needed a little extra oxygen after extubation, so to be on the safe side, she’ll spend the night in the CICU tonight. She should be able to come home tomorrow or Saturday. Other than closing a small collateral vein that had developed, the cath doctors did not make any big changes–but they did get lots of useful measurements and data. More on all that later. Thanks, everyone, for your thoughts, prayers, and kind words today!

back at it.

just in case you haven’t heard–imogen is headed in for a heart catheterization tomorrow morning. she developed some new issues last month; a long weekend inpatient on IV meds helped some. But after spending the Memorial Day holiday at home, we’re back to the hospital in hopes a cath will provide more answers and possible solutions.

She’s in good spirits, and if all goes well this visit should not be a long one. Thanks for keeping her in your thoughts tomorrow–we’ll keep you posted!

how she is doing, what you can do.

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happy Halloween, everyone.   here’s the quick update on how Imogen is doing: great!

and here’s a slightly more detailed one 🙂  really, she is doing so well.  we’re not quite two months out from surgery, and if you ran into her on the street you’d have no idea it happened.  (however, if you do run into her on the street, please redirect her to our house.  she really isn’t supposed to be out wandering this late.)  there are still a few post-surgical issues persisting–mainly a small pericardial effusion, or a pocket of fluid around the heart, which should go away with time and diuretics, and the questions about arrhythmias, for which she wore another Holter monitor this week.

heading into November with hospitalization in our rearview mirrors, we are feeling thankful: for Imogen’s recovery, for her outstanding medical team, and for all of you.  the support we’ve received from near and far has been, as always, overwhelming and humbling.  many people continue to ask how we are doing and what they can do to help.  well, today we have a special Halloween request: give blood.

vampire give blood

maybe you already give regularly, and if so, that is wonderful.  but if you are like me, you always mean to give blood, but it may have been years since you actually fit it into your schedule.

here’s the thing: it takes a lot of blood to get a heart baby through this process.  over the course of her surgeries and treatments, Imogen has used something like 10-15 units of blood–the bypass machine used in each OHS requires several units, and she needed frequent transfusions during her rocky post-Norwood course.  multiply that by the 960 babies born with HLHS each year, the thousands of babies born with different critical heart defects, and the many, many other reasons that children and adults require transfusions: car accidents, anemia, complications of childbirth, and more.  the need is staggering, and you can help.  commit today to donating blood before the end of the year–you can assign that bonus daylight-savings hour tonight as the one you’ll carry forward and use to visit a bloodmobile or donation center.

here’s the Red Cross page for locating a donation center.
for local folks, here’s how to donate blood at Children’s National.
and if you can’t give blood but would like to make a monetary donation to CNMC instead, you can do that here. (the race fundraiser we planned to participate in a few weeks ago was cancelled for weather.  they re-ran it today, but I needed to spend time with that little strawberry up there and her brothers.  next year!)

finally, I wanted to share this article the Washington Post ran a few weeks ago (best viewed on a larger screen).  it’s a snapshot, in words and drawings, of the Cardiac ICU at Children’s National, where we spent so much time when Imogen was a baby.  reading it was a gut-wrenching reminder of all that she went through, and all that she was lucky enough to dodge.  if you need another reason to support critically ill children and the doctors who treat them, let this be it.

current events.

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).WP_20150929_2248
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:

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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.