Silver Linings

Well Darlin Forrest, the bad news is the last three surgeries and 2 weeks in the hospital haven't resolved the problem of your CSF overdrainage.  The good news is that we have ruled out some awful possibilities.  Once the shunt was completely closed, the docs have confirmed the shunt is not causing the problem.  And  after reviewing a dozen of the previous CTs, that your Pops had stored on his lap top, and reviewing last Friday's high resolution CT and MRI, the specialists here are confident that you do not have a CSF leak.  Whew...Silver lining: no new huge underlying problem threatening your future.  

The doctors are visibly relieved, but you still have the problem of CSF overdrainage placing tension on your plates and bone grafts that will eventually cause the skin to breakdown. But now we have The Plan:  move up the big surgery ASAP.  We are hopeful that once Dr. Kumar completes the reconstruction of your skull using three of your own ribs, your own body will be able to create a new equilibrium between your CSF production and absorption, and this will prevent overdrainage.  It's a race now. To find or create an 8-10 hour opening for your surgical team in the OR before the tension on your plates causes a breakdown exposing the existing bone grafts to infection. The frustration is that our only way to impact the outcome of this crucial race is for you to stay as flat in the hospital bed as many hours in the day as you can....without going stir crazy, loosing all your condition, or developing blood clots! Our greatest advantage in this race is our faith and your amazing good humor and optimism which are bouyed daily by your faithful friends and many loyal supporters. Together we will win this race, complete this harrowing chapter of your journey, and return to BrightWood where a future brimming with possibilities awaits. 

A surprisingly difficult way to win a race. But Toliver is in. Whatever it takes.  We will not fail.  

As the early morning sun light filters into your hospital room, I can't help but think you should be on your way to Kansas City today with the Same Sky cast to perform at the American Music Therapy Association's annual conference.  But that is not meant to be.  We are grateful every day for their friendship and the transformative impact APTB and the Same Sky cast have had on your journey and our family. We will cheer them on from John Hopkins  and take pride in knowing they are about to Rock the World with their courage, talents, and inspirational messages. Look out Kansas City!!!

Forrest's message to the Same Sky Cast:  "Toliver and I wish we could be there with you, but we know you will do a real good job. Safe travels and have Lots of Fun"!!!!

With hope, love, and faith,

Mum