A Hard Lesson to Learn

Well Darlin' Forrest, you have made great use of the healthy months since your last surgery in July.  You have worked so hard at your recovery; gaining physical strength, improving your memory, fine tuning your legendary wit, attending college class, performing in the Same Sky Project, fundraising for CCI and APTB, and embracing yoga and meditation.   We had hoped that Dr Kumar would get his wish for you...a whole year without any surgery.  Unfortunately that is not to be, but all your hard work has you "optimized", as Dr Kumar says, for what lies ahead.

For the past few weeks, we knew trouble was lurking in the changing shape of your noggin. The bone grafts so carefully constructed by Dr Kumar in March were becoming more prominent and sharp edged.  The titanium plates that used to be visible only on CT scans, were clearly discernible through the increasingly taunt  skin graft. Appointments with Hopkins' hydrocephaly specialist, Dr Luciano, were moved up and Dr Kumar received weekly photographs of your changing profile, hoping to delay surgical intervention, at least until December.  On Friday we traveled to Hopkins again.  Our return was brightened by warm welcoming smiles from Erica and Melody, staff who have come to know you and enjoy your and Toliver's visits.  Dr Kumar's smile was more restrained, worry clearly visible on his face.  He affirmed our growing concern that, without intervention, the progressing tension was likely to result in an imminent breakdown of the skin overlying your bone grafts, exposing the bone again to infection and calamity.  We can't let this happen. Pre-op labs were drawn and Kumar consulted with Dr Luciano. They agreed that your shunt, which should protect you from high CSF pressures, now appears to be over draining your CSF, collapsing the skin around your reconstructed skull. This over drainage is exacerbated by gravity.  And when you are upright standing tall and strong as you've worked so hard to be, the shunt responds by draining too much CSF from your amazingly resilient brain!   What a paradox!   The doctors agree, this can't wait any longer.   

The plan now is to tackle the problem in two stages. The first step is to improve your shunt performance.  Next Wednesday, Dr Luciano will surgically place a new programmable valve in the shunt line at the level of your chest. Hopefully this new valve will stop the over drainage of CSF and resolve the problem so you can get back on track.  We expect to be at Hopkins several days after the surgery until they are happy with the settings and your new equilibrium. Our vision and prayer is:  Your skin stays intact until surgery, all goes well at Hopkins next week, the new valve allows your CSF to stabilize taking the tension off of your grafts, you regain your amazing trajectory, and you travel safely to Kansas City next month to perform the Same Sky project with your APTB cast at the American Music Therapy Association conference!  That's our vision and prayer for you.  

The second step, after the CSF issue is resolved, involves a bigger surgery scheduled on December 4 to complete the reconstruction of your skull in time to heal for Christmas!    You are strong, resilient, optimistic, funny, loved, and blessed in so many ways.  We've worked hard to get you out of bed and moving (over 10,000 steps on your own in one day recently, according to your fit bit!) Now the challenge is for you to stay down, feet up and resting until Wednesday!  Why does that seem so hard?  Because you have become a man of action, moving always toward the next challenge, the next opportunity. And to be fair, you are genetically challenged when it comes to the patience department. So we will practice patience until we learn this lesson together;   to center ourselves, to breathe, rest, and find our inner calm....while we envision your future....healed, joyful, and moving confidently again toward the next horizon. 

Practicing Chillin' - something you used to be really good at before the hard work of recovery began... 

With love and gratitude for our loyal friends, devoted family, unshakable prayer warriors, and brilliant caring doctors. 

Mum