The Call

During the last week, as we waited to hear from the cardiologist, I decided in my head that Conner has been fine for six years, there are risks to heart surgery, and there are so many unknowns with doing surgery, so they would not be recommending surgery.  Well, I was wrong.  Somewhere deep inside I knew I did not have all the information, but it got me through the week.  Yesterday, I spoke with our cardiologist who had consulted with several other cardiologists and surgeons.  They suggest surgery.  Things I had not understood, or chose to ignore:

• collateral vessels (like the one supplying Conner's lower body) are not meant to be the main supply
• they are not equipped to do so
• they are twisty, turny, tangled, long, and not very efficient
• they can develop clots
• they can get infected
• his lower body is most likely not getting enough oxygen rich blood, which could explain his inability to run more than two or three steps, his lack of coordination, his decreased energy, and possibly a lot of other things we have just attributed to Kabuki syndrome.

Before we make a decision, they want to do a few more tests, and have us talk with the surgeon about all the options, details, risks, procedures, unknowns, etc.  We are scheduled to do this on October 26th.  It will be a full, long day at Children's Hospital.  We will keep you posted.