The “C” Word 1 year plus 176 days Standing Tall

The past few weeks have been a whirlwind of activities.  Starting with a visit to a new surgeon for a second opinion.  Dr. R as he is called (his name is very long, Rustamzadeh) who, after a brief review of the CT and other scans, basically confirmed the surgery that was necessary BUT who said it would take about 4 hours total.  Oh my gosh – that was less than half the time of the VMC surgeon.  He also said the hospital stay would be just a few days.  Interestingly he said that the CTO brace should never have been an option as the bones would not have fused by themselves with George’s bone disorder. He said if we had seen him after fairly soon after the fall he would only have needed to do surgery from the back of the neck, not the front and the back. Hindsight being 20/20, we probably should have sought out a second opinion right after the hospital discharge in December.  But we did not know that George had this disorder and we also hoped to be able to avoid a surgery altogether.

Once we received the second opinion the whirlwind of pre-op activity took place.  First stop was a cardiologist to get “cardiac release” that George’s heart would not have any issues.  Right after that was an echocardiogram which was interesting to do with the brace on.  All of that went well and surgery was scheduled for February 19^th.  The week of surgery we needed to have labs and a chest xray.  The night before we had to do a special preparation including full shower and special scrub to begin the “disinfecting” process.

Surgery day we awoke at 4:30AM, got up and dressed and to the hospital by 5:30AM.  Surgery was at 7:30AM and I was able to stay with George until they wheeled him into the operating room.  Then, the long wait began.  Although 4 hours was the estimated time, that came and went.  We constantly watched the status on the wall which said “8589 Surgery/procedure in progress”.  Wait…. Wait… Nothing changed until about 1:45 when it said, “Closing”.  Keith and I “high-fived” each other!  The end was near!  About 25 minutes later it changed to “Finished”.  Another high five!  Shortly after that the surgeon came down and let us know that it went very well.  He showed us an xray of the “after” affect and it was amazing.  He actually straightened George’s neck to an upright position. So he may actually be back to the height he thought he was (a few months back when they measure him he was 2 inches shorter). The reason it took longer was because George’s vertebrae were so frozen it took them awhile to open the neck back up and get it in place.  It was several more hours before George would leave the recovery room.

FINALLY, at 6PM his bed rolled by the waiting room on the way to his room in the Orthopedic Pavilion.  Steph was able to stay for a short while.  Then the first long night began.  George was pretty groggy and on dilaudid for pain management.  This tends to make him chatty.  So between groggy and chatty he was fairly entertaining.  Kept asking about who had stopped by.  Asking how long the surgery was.  Same conversations repeated.  I felt like I was home with his mom!! 

I was not able to fully go to sleep until after 10:30PM and awakened by him at 3PM asking for pain medication.  Again at 5AM to use the bathroom.  Today has been a day of adjusting and readjusting pillows and blankets.  The brace against the back of his neck has been very uncomfortable.  Sometimes, just as he gets comfortable – a change…. Perhaps it is to use the bathroom or when a therapist comes in.  Of course, nothing is easy as there are pillows and blankets to move away, finger cuffs to take off, leg circulation braces to come off and good ol’ “Chromium Chrissy” needs to be unplugged to take with him.  And when he returns to bed it all has to be put back in place.  What a cycle!  It can be frustrating because sometimes he takes it out on me.  I prefer when company is here because he tends to be more pleasant. 

The progress made today was that he can now have ice chips to eat and is getting some pills by mouth as a test to see if he does okay swallowing.  He also was up and did a short walk down to the nurses station and back.  Tomorrow they will add liquid nutrition to his regime.  And more OT and PT.  We are not sure if we will go home on Monday or on Tuesday, but they are definitely moving him in that direction.

I have a feeling it is going to be a long couple of weeks until his neck doesn’t feel so tender anymore and the pain level subsides.  I look forward to a day when he is able to do more for himself.  I know he hates being reliant on others (i.e., mostly me) to take care of even the simplest of tasks.  It takes its’ toll on his sense of self.  It is equally hard on me because there is a physical and an emotional demand that sometimes feels so constant I can never truly relax.  For, just like December, every time I sit down he tends to need something.  Or at least that is how it can seem.