Monday 21st, # 9 Tomorrow

Today was another good day.
- He continues to not have leaking of CSF through his lumbar incision
- continues to tolerate sitting up well
- still has the extraventricular drain, so moving is a challenge, each time level of head changes the unit must be clamped and reset
- no fever, cultures remain clean!
- He had his MRI today.  To the surprise of all, even though each hour the EVD is draining 5 to 20 cc's of CSF off his system, his ventricles have not decreased in size.  A factor in this could be that the profuse leakage from the lumbar region is now closed.  The leak itself was acting to decrease pressure and now that the repair has occurred he has more of a closed system that he's not used to.  Although his ventricles are large his pressures are very safe right now.  More proof that in order to keep his system safe and to protect the repaired dura in the lower spine a programmable shunt must be inserted.
- We are watching a very small lesion on one of the 4 scalp incisions.
- Shunt placement surgery and removal of EVD is scheduled for the second half of the day tomorrow.  Best case scenario, if no problems occur we may have 24 more hours after this 9th surgery... and then be discharged to home.  I have hopes.... but also am being realistic.

Thank you for prayers that cover him.  I've felt blessed and encouraged by many of you.  Dan and I are exhausted on the home front and here in Buffalo Children's.  Fear definitely creeps in as well, and lack of sleep doesn't mix well.... but the encouragers  and supporters have been greatly needed.

I feel my son's little system, although he's a strong strong fighter, is a bit like a set of dominoes.  Fixing one issue, often opens pandora's box.  Changing anything to fix or stablize a problem, somehow seems to start another reaction.  I'm praying for this to be the last domino... no more ripple effects.... no more snowballing. 

Looking forward to being home, .... waiting anxiously.  It will be tricky managing his acute needs in the first few weeks, school break, follow up appnts in Buffalo... but one day at a time.

Right now looking forward to Christmas, however it ends up looking.  

Today our PICU room had christmas music, christmas lights, wrapping and card writing.... we will bring Christmas here one way or another.  Will update you all after surgery tomorrow....