Battered soldier comes home

Home sweet home.   Its hard to believe the extremes and the torture that Max has been through, harder to believe how resilient he is.  Home just 3days after neuro and head surgery, amazing.  When he first woke only an hour after surgery and wanted that tube out and fought hard for it, I was so relieved to see it was him, that his brain had not been damaged, my Max was fully intact. 

The days after surgery were filled with all forms of torture that no child should ever go through.   The first morning after surgery they xray’d Max and found that the central line (high flow IV into an artery in his chest) had been placed to deep and can cause heart arrhythmia so it needed to be moved.  This was done while Max was awake and entailed removing stitches, moving the line and re-stitching him.  It was agonizing pain for him.  The resulting stitches were placed in too tight and caused severe pain all day.   One of Max’s neurosurgeons  came by and volunteered to remove the worst stitch.  She tried with the standard tools but it was too tight so she ended up using scalpel to cut it out.  This was only the beginning of the pokes, prods and pulls that continued over the next few days.  Right up to the end, several nurses spent an hour trying to remove the final two stitches of his central line before they gave up and just left a stitch in for someone else to deal with next week.  Max, Mark and I were completely wet with sweat from the torturous episodes.  Max has been traumatized from the years of pokes and prods that he has been through, Im not sure how we will get through the years ahead.   Not sure how he will get through the removal of the stitches in his head next week, the staples in his head the week after, the aphaeresis catheter placement and blood harvest coming up, the chemo, the stem cell harvest………This is only the beginning of the journey. 

Despite the hell we went through there was also so much support and kindness from friends and from the medical staff.  Patty had our nurse friends all ready to go to give Max VIP treatment and the best of care (and to bring me lots of Starbucks).   Dr Armene who interrupted her surgery schedule to race down to the MRI and remove Max’s drain from his head while he was anesthetized so we could avoid another traumatic session.  Dr Levy and Dr Weisman for doing a great job and returning my hero back to me intact.