By God's Grace

Sitting by your bed in the early morning hours watching you sleep with Toliver and Sarah Bear standing guard, I am humbled once again by the depth of your courage and the breadth of your resiliency. 

 

Yesterday was a difficult day.  The new programable valve, which is supposed to lessen the danger of your cerebral spinal fluid overdraining, is proving difficult to reprogram.  The process involves placing a powerful magnet over the valve which is directly under your surgical site and pushing the magnet against your tender chest, while turning the magnet and reading the instrument. 

The setting refused to budge.  When it finally did, apparently it went in the wrong direction, lowering the resistance to flow instead of increasing it.  As the day progressed the profile of your treasured Noggin began to worsen instead of improve.  Neurosurgery was paged, but Friday night is a crazy difficult time in any major urban hospital. The neurosurgeons were all tied up in the OR.  It was surreal.  We talked and laughed and played cards.  All the while I knew your situation was worsening and I was pretending that everything was fine.  But you are too observant and we are too closely connected for me to fool you.  You called me out, laying a hand on my shoulder and looking right into my eyes, you asked me, "are you OK Mum?"   I answered honestly, telling you I was worried about you're Noggin and just wanted it to be all better. You grinned at me and replied, "of course Mum, it's going to be just fine and now I'm going to crush you at blackjack!" And so we played on and you did.  

Eventually the chief neurosurgery resident appeared and agreed that your changing scalp profile meant that there was a problem with the shunt or the valve. He left to call Dr. Luciano and get supplies.  He had to deal with another emergency before returning with a different programer. This reader confirmed that the setting had gone in the wrong direction.  It was now at four instead of the desired seven. More pushing, turning and probing the surgical site over the valve with the magnet.  You couldn't help but squirm but never complained.  Eventually the setting budged and moved to six but wouldn't go to the goal of seven.  The skin surrounding the surgical incision was becoming red and swollen.   The resident was clearly frustrated and concerned.  He paused to consult by phone with Dr. Luciano. The decision was to take what we could get and hope that we would see some improvement overnight.  He promised to call the manufacturer of the valve to see if there are other ways to advance the setting.  

You gave the weary resident a smile, a thumbs up and thanked him for trying, as he responded to another page from the ER.  I asked for some ice packs for the area and more Tylenol which seem to relieve the pain and some of the redness.  My heart went out to you, with your valiant patience.  And to the dedicated resident who did his best for you.  He clearly empathized with your discomfort and my concern, while probably juggling another dozen difficult cases in his mind. 

And by the grace of God, this morning the light filters through the blinds and glances across your sleeping form revealing answered prayers.  The valve is working.  Your profile is less sunken.  A hint of a smile graces your sleeping face.  

As I sit quietly writing this entry, the door to your hospital room opens and, as a nurse joked later, "All heaven broke loose"!  In comes last night's resident with a big smile on his face.  Your eyes fly open and he announces, "The Stars have aligned and I am not leaving the hospital until the problem is fixed".  And with him he has other neurosurgery residents and the valve manufacturer's representative!   Together they reassess the situation and your appearance.   While your scalp is less sunken, you and the resident agree it's not yet "perfect"!  The group proceeds to probe the delicate area again and discover that the valve is somewhat tilted due your anatomy (or perhaps an old fractured collarbone?). With this revelation they tilt the magnet ever so slightly and are able to successfully reset the valve to the desired level seven!   

Radiology is called and the technicians arrive right away.  They recognize you and Toliver from your many visits to their department.  They are thrilled to be able to help confirm radiographically that the shunt and valve settings are correct! 

What a roller coaster ride the last 24 hours have been.  From despair and worry through a hurricane of activity culminating in another victory and more  Angels to add to your amazing Team 44!

We are truly blessed to have such a Cadre of dedicated surgeons, doctors, nurses, radiology technicians and medical technology representatives all gathering, like earthly Angels, on a Saturday morning to get you back on course! 

We won't really know if the valve will continue to prevent the overdrainage of CSF until you are allowed to climb out of this hospital bed and resume your activities, your life.  But for now, for this moment in time, the imminent danger is past.  We can breathe deeply again and look forward together to the next challenge.  

With a tired but grateful heart,

Mum