Finally, a Phone Call

Last week I whined about not having heard anything from Lilly's doctor.  At an experienced friend's suggestion, I sought advice on breaking through this apparent stone wall in communication from a few of the internet groups I've found for families with children with congenital scoliosis.  Within a few days, I had heard from several other families who are at various points in the process of surgery with the same doctor, all of us having similar frustrations.  I learned from one family, however, that our doctor has been having his own health issues. 

So, just yesterday, while I was out for a long run, my whining turned into prayers for him.

And today, out of the blue, the phone finally rang. 

He said they have him "patched up and back to work," alluding to whatever his health issues had been.  He said they are trying to accelerate the OR scheduling to get more kids taken care of.  All good news. 

The bottom line is this:  Lilly will need an initial surgery on her spinal cord, which is "low and split," meaning, in his opinion, that there is something structural holding it down and causing it to split.  He recommended consulting with a local pediatric neurosurgeon to repair her cord, then giving her about a month to heal, and then coming to CHOP for her VEPTR surgery.  He is going to consult with the 2 pediatric neurosurgeons at CHOP for some local recommendations (or at least more local than Philly). 

Stay tuned.  It may still be a good thing that our summer is a blank slate (even though I had mentally started to fill it up with activities and trips!).