Here We Go Again

As many of you already know, Ernie is currently at Wake Forest Baptist Medical Center awaiting surgery on Tuesday morning.  He is out of intensive care and can now receive visitors and phone calls (3336-407-3800 cell #).  He is in room 907, 9^th floor, Cancer Center.  Parking deck C is the closest deck for visitor parking.  We had been planning to go back to John’s Hopkins for surgery but the doctors agreed that it is now too risky to move him. 

I have spoken to many of you in the last two days but for those I have not, here are the details.  Ernie has been gradually losing his ability to speak and swallow food.  His scleroderma (autoimmune disease which means hard skin) caused an exaggerated response to the radiation treatment for his cancer and the subsequent surgery to remove more cancer in his lymph nodes.  As a result, the skin on his neck has become harder and harder.  He also has a lot of internal swelling in his neck from the trauma of radiation and surgery.  The combination of hard skin and swelling finally landed him in the ER on Wednesday night when he had a coughing attack and could not breath.  This combined with his increasing weight loss (can’t eat enough calories to maintain his weight) and his fatigue from the sleep apnea (another side effect of the swelling in his throat) have made surgery necessary. 

He must have a tracheotomy and feeding tube inserted.  We have been assured that he will still be able to eat what he can by mouth and he will still have his current voice.  He will also be able to take a sledge hammer to his C-PAP (sleep apnea) machine—something he is very much looking forward to doing.   

He will have to be in the hospital for 5 days following surgery, so I am looking forward to welcoming him home on the November 9 or 10. All that said, this operation is more risky for Ernie than for any of us.  Because the range of motion of his head and neck is limited and the skin on his neck is so wooden, there is some small chance that they will not be able to sedate him and, if they do, there is some small chance that they will not be able to do the trach.  Thankfully, no one is worried about the feeding tube! 

I wanted to let you all know Ernie’s status as it is your support that has kept us going through this long and arduous process.  It is so comforting to know that we are not alone.