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.