JUST KIDDING on the blood drive, and other tales of Friday the Thirteenth.

In a very disappointing turn of events, today’s blood drive was cancelled due to a broken bloodmobile generator (and a broken backup generator, and a broken assistant-to-the-backup-generator…). Bummed is an understatement. I know so many people set aside time to come out today, and I was really looking forward to popping over to visit with you and take pictures for Imogen to see. A million thanks to the UCNS community and Jessica & Stephanie especially for agreeing to host, handling the scheduling of many volunteers, and then handling the last-minute unscheduling when the drive fell through. I hear some people came over to the hospital to donate, and that there will likely be a reschedule once the bloodmobile is up and running again, perhaps in September. I’ll keep you posted. Thank you all for your intentions.

Yet–as bad luck would have it–downed bloodmobile was not the biggest Freaky Friday news item at Children’s National today. A pressure issue in the District’s water supply put part of the city, including our hospital, under a precautionary Boil Water notice. Inpatient children throughout the institution were spared their daily baths, and a truckload of Kirkland water bottles was dropped off to provide for consumption (alas, no ice!).

And Imogen is tonight recovering from her own share of 7/13 ill fortune: unfortunately, the chest drain placed below her incision last month finally came loose on Thursday afternoon, and she made another trip downstairs to the OR today so her friends the interventional radiologists could place a new chest tube on her right side. The good news is that the procedure went well, and creative placement work by the IR doctor means she can still sleep on that side of her body . The bad news was that she endured a needlessly long NPO window just after she had finally gotten the green light on a full return to eating and drinking earlier in the day. Again, bummed is an understatement; you can imagine how disappointed and frustrated we were by having to tell Imogen–yet again–that she couldn’t drink, and that we didn’t know for how long.

I’m happy to report that she closed out the day with a walk around the hospital, including a visit to Cardboard Doc McStuffins, and a much-awaited slice of naan pizza. (Our Hyattsville neighbors will appreciate that the echoing sound of Imogen screaming “SPICE SIIIIIIX!!!” down the halls of the CICU has convinced more than one employee to give our local restaurant a try.) We are praying that with the evenness of a date-turn to 7/14 comes a balanced weekend of rest, clean water, and ongoing repairs for our girl.

blood drive tomorrow!

hello everyone! imogen is plugging right along: she did 72 hours of dialysis then switched over to start another round of plasmapharesis, since that process can use the same catheters and she still has some rejection antibodies circulating that could stand to be removed. Smoke ’em if you’ve got ’em, I think they say.

We’ll decide next week whether it makes sense to continue imogen on some form of dialysis–the kidneys are back in business for the time being, but it may make sense to keep dialysis in the mix for additional support for a while, since she responded so well and we know her kidneys are still sensitive overall. TBD.

For each new 72-hour round of dialysis, and for each day of plasmapharesis, guess what imogen uses? that’s right: DONATED BLOOD and blood products! so I am really excited that many of you will be turning out tomorrow when University Church Nursery School will be hosting the Children’s National Bloodmobile. If you are signed up, consider this your reminder; if you haven’t signed up but have availability tomorrow, you could contact organizer Jessica LaGarde at massage at peaceathand dot net to see if there are still slots for participating. The good news: even if you can’t make it to this blood drive, you can always donate at the main CNMC campus on Michigan Ave or your local children’s hospital or Red Cross blood donation center. And send us a note and/or photo if you do! We’ll keep a list going for Imogen, then force her to write thank you letters in a couple of years, once she’s learned to spell.

“at least the machine is cute” and other things we tell ourselves to feel better about dialysis.

And it really is–cute like a Star Wars droid-extra, anyway, one of those b-grade robot actors who rolls behind R2 and C3PO in a diplomatic scene, or serves drinks in an intergalactic bar.

IMG_4359.JPG

After toeing the line several times already during this post-transplant course, Imogen’s kidneys finally gave out this weekend, and the CICU team called in cardiac anesthesia and interventional radiology from their Sunday barbecues to place dialysis catheters and initiate CRRT, continuous renal replacement therapy.  It’s a fancy name for a kind of hemodialysis that has Imogen hooked to yet another machine all day and night, doing the work of her kidneys while her body can’t quite manage it.

This episode of kidney injury was definitive–but not permanent, we feel certain.  Dialysis is a good tool when needed.  The machine’s filters are effectively removing the high levels of blood nitrogen that left Imogen disoriented and lethargic over the weekend, and we are already seeing the (slow but steady) return of urine production, something that had come to a complete standstill.  We are told that kid-kidneys are very resilient, compared to adults’, and that other cardiac patients who reach this same point in treatment go on to do well even after long stints on the dialysis machine.  We’re planning for a days-not-weeks scenario, and feel somewhat hopeful that the doctors can use this time–and the ability to finely tune her ins & outs–to address some of Imogen’s ongoing fluid balance issues.  And then that funny droid can totter right back out of this room.

We have fewer answers for questions about what anyone can do to break Imogen free of these cycles of kidney injury and lung distress and gut overwhelm.  We know part of the answer is time, just time.  But if Zach and I could find a way for this recovery time to be less dramatic, less painful, less unpredictable for her–gosh, we would love that.  We’re pushing, again and again, for Imogen’s doctors to work together and come up with plans that will prevent such sharp swings in her condition, and ultimately manage her to a point of recovery that gets us out of this ICU and back home.

June 2018 at the hospital-9

As it is, Imogen’s mental resolve outpaces her kidneys (most moments, anyhow).  When she has energy for nothing else, she demands to be read to, and her will to fuss and fight with any provider who crosses her remains strong.  And then there are the less fussy moments, with the nurses and doctors she has come to trust–especially those who include Imogen in her own care, whether it’s peeling back dressings that need changing or doing her own finger stick for glucose tests.  Today, after a long weekend of worrying and missing her smile and voice, I nearly peed my own pants with pride when she turned to the dialysis nurse and calmly asked, “What are you doing with that machine?  I feel curious about blood.”  My girl.

June 2018 at the hospital-16

June 2018 at the hospital-3-2

June 2018 at the hospital-1

Thanks again to everyone who continues to support our family from near and far with food, community, and positive thoughts.  We are able to take care of Imogen because you have looked after of the rest of us so well.

 

 

 

checking in, hanging in.

apologies for omitting a cath update before now, and thanks to all who have checked in on that front. it’s funny, we have been downstairs to cath lab so many times this visit, for actual caths and for other procedures performed there, that I suppose the novelty of that space has worn off a bit–and along with it (for me) some fear. which is only to say: sorry! if I got too blasé and anyone else felt worried by a lack of news. mostly I am just groggy and days are blurring into one another and I know you all understand 🙂

for one reason and another, biopsy results were slow returning–but largely reassuring. still no acute rejection (yay) and while it looks like we need to continue treating Imogen’s AMR to be sure all antibodies continue to clear her system and stay repressed, there were no big surprises in the heart tissue itself. In terms of heart function, her diastolic dysfunction (high venous & filling pressures) is unchanged, but overall squeezing function is also unchanged, i.e. good. So, still waiting on time to work its magic and fully reconcile this body and heart to one another. Waiting and waiting.

in how-is-she-feeling news, this week is better than last week. Imogen’s diarrhea remains intense and unresolved, but her electrolytes are more balanced and she has a bit more energy. she is back in the saddle with PT/OT and we’ve been massaging excess fluid out of her legs as we are able. her indefatigable preschool teacher was back again today and–despite just coming off a hard OT workout–Imogen was able to paint for a few minutes on a clay sculpture project from two weeks ago. Last week she couldn’t manage much more than lying in bed and listening to books during Mrs Wright’s visit , so seeing Imogen up and participating again, even for a short time, made my heart happy.

(**and now I’m double late since this didn’t manage to upload on my first try. happy 4th–dreaming today of independence for imogen and justice for all.)

cath Thursday and other imogen updates.

first, the good parts: Imogen’s doctors are continuing to make progress in fighting her episode of antibody-mediated rejection. Her last few blood tests for donor-specific antibodies have come back negative. She will have a cath on Thursday to assess heart function, see whether the antibodies have cleared from her heart tissue, and recheck for any acute rejection. Thanks for sending your good thoughts her way. We are thankful that this very Big Picture issue is slowly but surely responding to treatment.

Other aspects of Imogen’s recovery remain difficult to manage. Last week’s good news: the time looked right to draw back her IV nutrition and reinitiate feeding in her belly (by g-tube and mouth). This week’s bad news: maybe it wasn’t the right time–and the days of vomiting and diarrhea that resulted have thrown her electrolytes and other aspects of fluid balance into disarray. And, after working to a place where she mostly only needed a nasal cannula for oxygen, she’s currently back on the bipap mask full time to support respiratory distress, maybe from a virus, maybe from the fluid imbalances. These and some of the other bumps currently in the road are temporary problems, but exhausting nonetheless–and doubly frustrating when they come on the heels of what we’d hoped was lasting progress.

We’re currently at 50 days in the ICU and over a hundred in the hospital. One of these days we will bring Imogen home, and that day is getting closer–even when we can’t see or feel it. Before this setback, Imogen was back on the PT/OT train, working to take the first steps back toward… taking steps! she’s working on arm and leg exercises in bed, small moments of weight bearing and balance adjustment, and time spent sitting in chairs instead of bed. While that process is going to be intense and painful for her, the sooner we can get it rolling, the better. And her mental resilience–though it’s being tested all the time–has not failed her yet. Among all the procedures and exams and dressing changes, we’re trying to work in as much art making and book reading and card playing and movie watching as we can. She is doing this. She is.

quick update.

just to say that Imogen had a really great Wednesday and is on track for another winner today.

still lots of work to go, but two pieces of great news are 1) the new chest suture/drain situation is holding strong, and 2) donor-specific antibody counts appear to improving enough that we will not have to do another round of plasmapharesis this week–sticking to heavy duty anti-rejection drugs instead.

yeah!

warrior face.

(and if you don’t know this outtake from the Moana soundtrack you should.)

the past two weeks have been something of a blur. after many adjustments to plans and running squarely into some escalations we thought Imogen had avoided, this Monday finds her dealing with several tricky situations.

it turns out I have a hard time sharing bad news; I’m always on the lookout for more hopeful turns that I know must be just around the corner. and really I’m almost always right. Imogen spent the morning in cath lab and then (after parking in the hall for 15 minutes or so) headed into the OR. she’s been in and out of both places for smaller procedures quite frequently lately, enough that she asked whether “that nice lady” with the sleepy medicine would be waiting for her downstairs this morning. it’s high praise coming from her at this point in the hospital stay… maybe she’ll grow up to be an anesthesiologist.

the OR visit today was a more involved one, in which her surgeon explored her chest incision (almost certainly wearing one of those cool pith helmets) and added more sutures to the cartilage portion of the sternum. the high steroid dose Imogen has been on as part of her immunosuppression regime slows wound healing, and recently her pleural effusion had taken to exiting straight through her chest incision, rather than through one of her chest tubes. after some attempts to manage the fluid drainage with a wound vac (a machine as ridiculous as it sounds), the team became increasingly concerned that the situation could lead to infection–hence the more aggressive surgery today to reinforce the incision and also to place a new pericardial drain, which should route the drainage away from the wound. the surgeon MacGyvered a special suture-free attachment for this drain, because we want to avoid putting any extra holes in Imogen’s skin, which is also struggling to heal all over her body. if this new setup is successful in keeping the drainage away from the sternal incision, Imogen can avoid more invasive procedures to try to rein in the chest drainage. fingers crossed.

speaking of infection, Imogen has also been battling–successfully so far–an infection circulating in her bloodstream (see earlier note about downsides of immunosuppression). however, the antibiotic she needs to fight it taxes the kidneys–so much so that hers checked out completely over the weekend. up until the very last moment this morning (like, as we were wheeling her bed out the door of the ICU), the plan was for Imogen’s cath lab visit to include placement of neck catheters to start dialysis today. however, after reviewing her overnight labs, the doctors decided she has just enough wiggle room that they should be able to manage her through it without dialysis, so we have escaped that misadventure one more time. if all goes well, the kidneys will slowly return to function over the course of the week.

Imogen came back from OR intubated but quickly transitioned to bipap support, something she has been needing since some episodes of lung collapse a couple of weeks ago. the bipap machine provides pressure support when Imogen inhales–it adds a little oomph to each breath she pulls in. it’s a big machine and it comes with a giant face-covering mask. we initially thought it would just be a one night affair, but she seems to benefit from the extra support and, once she got used to the mask, was able to tell the difference in her own work of breathing. we have reached a decent equilibrium where she can take long breaks on the nasal cannula to get outside or play games in her room, then go back to the mask for quiet things like sleeping and books and music and pretending she is an astronaut. (okay fine. I am the one who pretends that.) anyway–while we’ve now accepted the situation as a temporary measure, it has been another layer of difficulty for Imogen that we wish she just didn’t have to deal with.

finally, though her biopsy results for cellular (acute) rejection have so far been negative, she has had some labwork showing the presence of donor-specific antibodies circulating in her bloodstream. further biopsy testing confirms she has an antibody-mediated rejection process at work–though so far it looks like her heart function has not been impacted. this is a slow-burn situation–serious but evolving over time, and treatable, but only with some pretty extreme measures. Imogen has already spent seven days on plasmapharesis, in which all the blood is removed from her body, separated, and returned to her with new plasma (donated plasma! and oh hey local folks have you signed up for the July 13 blood drive yet? bring a friend!) Since antibodies reside in the plasma, this can be an effective treatment–when coupled with some heavy duty drugs. however, the aforementioned infection situation has complicated the timing of those drugs–you don’t want to give anything that further suppresses the immune system in the face of active infection. hopefully, in the next day or so, we can get back on track with any needed medication and avoid more plasmapharesis–but that’s still TBD pending the results of today’s cath biopsy.

so. that’s a lot to cram into one blog post, and it’s been a lot to cram into a couple of weeks in one little girl’s life. for us as parents living through it, absorbing the waves of bad news and hourly, minute-ly changes to plans has been pretty exhausting. to that end, if you see me around town or in a photo over the next few weeks, please ignore the circles under my eyes and pretend my hair looks FABULOUS.

I feel much more hopeful today than I did over the weekend, and I (mostly) felt more hopeful this weekend than I did on Thursday. through it all, Imogen has continued to show small signs that her overall recovery is carrying on; through it all, Zach and I have continued to push for normalcy and quality of life for Imogen wherever we can find it. thanks again for cheering so hard and so well from the sidelines. I wish we could all take turns doing this recovery for Imogen–we could make a doodle poll of long days and painful procedures and if we each did a little, I bet we could get it covered for her no problem. But, since we can’t do that, at least we can bear witness–so when she’s a little older and doesn’t remember this part so well, we can remind her what an amazing kid she is.