Where to Begin?

(See update at end)

Where should we begin?  With the crushing resignation of driving her through the dark to a ten hour brain surgery, anxiety already widening her sleep-laden eyes?

With the doctor the night before who said you must be ready to hold off potentially arrogant and ill-informed surgical residents during the critical initial weekend of recovery?

With her Godfather, the officiant of your wedding and a friend beyond measure who showed up at 530 AM Friday morning and refused to leave for days, a priceless gift you wanted and needed but would never request, a gift you can never repay?

With an overwhelming community of supporters you still cannot believe and are not sure you deserve but are certain she does?

With the flood of relief when the surgeon tells you she is done and ok, a flood then quickly polluted with the news that some tumor still remains?

With the gratitude you feel for the extraordinary surgeons and anesthesiologists who delivered her back to you shaken and hurting but still fundamentally ok?  For equally brilliant and human  endocrinologists and oncologists who help her recover and assure you she can still live the life she deserves?

Or with the pediatric ICU, a hermetic and heartbreaking and occasionally harrowing land with extraordinary nurses and variable doctors and pleading cries from your daughter of I want to go home and Is this going to hurt?

Eventually, we will address all of these and more. But for now, there’s only one place to begin: Neva is ok. She is ok. She is out of a surgery excruciatingly long, she is past the most critical post-operative period, she is back in her own clothes for the first time in more than four days. Later today, she will leave ICU for a less invasive, less terrifying part of the hospital. She is sad, she is scared, she is not yet who she was or will again be. But she is ok. And that’s all that really matters.

Neva_lion_ICUIt’s also all we want to say today. The time for reflections and details and confronting the next wave of decisions in her care will come. Some of it will come soon.

But for now? She’s ok. We all are.

Update:  Unfortunately, we hit the realities of complex medical procedures once again.  Just as we were to leave ICU, we discovered a probable leak of cerebrospinal fluid from Neva’s sinuses.  This sounds bad, and, well…it’s not great.  But it’s also not a big risk if addressed, it’s not uncommon after this kind of surgery, and the treatment is fairly routine, at least compared to what she already has endured.

The hope is that what we saw was a one time thing, and that any small leak self-repairs.  Apparently that can happen, and Neva’s leak was not classic (in a good way) – it did not recur even when she sat up and cried for 5 minutes straight, something that the surgeon said nearly always will provoke more fluid loss if a leak is truly present.  And she does not have other clinical symptoms of a classic CSF leak (bad headache, etc).  So, the plan is to simply watch her overnight.  If the leak recurs, she will go into the OR again tomorrow to have a lumbar drain placed, the point of which is to relieve CSF pressure in the head and give a leak more ability to self-repair.  Typically that does the job.  If it does not, they go back in for a direct repair via the sinuses.  Gah.  But that’s fairly rare, and even then it’s a scope-only procedure and not too invasive in the grand scheme of things.  Of course, we hope that’s not the path she is on.

These things are true:
1) She is still ok.
2) CSF leaks of this kind are common and readily addressed, and better to be where we are if one occurs.
3) No matter what, this will probably keep us in the hospital longer.  If no leak recurs, that’s obviously best, but we’ll need be confident any leak is gone before going home.  If she does need the lumbar drain, that’s a longer and less fun road.  But one that should still work fine.
4) She is still ok.  So are we.  Nothing to do but adjust, dig in and keep helping her through.


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