Acceptable Risk

Today was the hardest day of my life.  And oddly enough, I find comfort in the knowledge that it have not have this status tomorrow.  For tomorrow will be infinitely more difficult than today.  Weird- I know, but I will take comfort where I can find it.  At least today, we can relax a bit, laugh, and stay in our little bubble. . . I entitled this entry after the discussion we had with the surgeon's assistant earlier this afternoon.  We had to sign several consent forms- forms that covered the risks involved in tomorrow's procedure.  I think we knew what to expect, but hearing it in person takes it to a whole new and unwanted level.  No parent should ever have to hear this news.  Low percentages and good odds sugar coat nothing.  I wish to God that it did.  Feels like my optimism stayed behind in Williamsburg.  I didn't cry until after the assistant left the room.  Why I have to act brave in front of strangers is still a mystery- for my eyes ultimately deceive my act.  She repeatedly stopped and asked if I was okay.  At least I didn't lie- I said no.  But who would be okay at a time like this? 

She was very straight forward, and I appreciated her candidness.  What a job she has, to review this information with different parents on a daily basis.  How do you share these kind of statistics with petrified people?  Well, she does, and she did.  

We have two major hurdles to clear tomorrow, aside from the surgery itself.  First, there is a 5% chance that Miles' natural pacemaker (nerves that carry the electrical impulse that make his heart beat) could be nicked while stitching in the patch.  If this happens, Miles will be given a pacemaker, which will be implanted several days following this surgery.   His dependency on the pacemaker would be unknown until he has fully recovered from the first surgery.  Secondly, his heart and lungs will have to start working on their own; these functions will be externally controlled during the entire procedure and for sometime following.  He will be on a ventilator and a "heart and lung machine."  The ventilator will be in place for several days post-op, mainly while he recovers in the PICU (pediatric ICU).  Since this is by-pass surgery, his heart basically stops functioning, and all of the blood is removed.  The "heart-lung" machine will do the work for him.  If all goes well, that machine will be removed.  And if he regains his strength, the ventilator is then taken out, and he will breathe on his own.  

Another obvious risk is the big "D."  Jesse and I have been thinking about this outcome separately, prior to our meeting today.  But we have not openly shared our thoughts on the matter.  It's as if talking about "D" will make it a viable possibility.  I won't even type out the word in this forum- for it is too close and too real.    

I felt sick to my stomach hearing the risks.  I feel sick again writing it.  But as my title indicates, we have no other options.  And this operation needs to happen now, or so says the surgical team and attending cardiologists.  Jesse and I also want this operation for Miles- and we are very lucky that it is available so close to our home.  We mainly want the operation to simply make Miles becomes stronger and live longer.   

The doctors and nurses encouraged us to get some sleep tonight; I fear that my dreams will be about life-support machines.  Or maybe I will stay awake just to listen to my son breathe, which is turning out to be a precious and endangered activity.  

Upon leaving the hospital, Jesse and I made a pact- once we get through Miles' surgery and recovery, our goal is to give him the happiest and most comfortable life possible.  His tiny body will be encumbered by countless wires, plugs, stitches and tubes- a situation unfortunate for any child.  By the end of tomorrow afternoon, Miles will have experienced a life more difficult than most adults ever do.  We are in accord that this will be enough stress to last us all for a lifetime.    

I ask that tonight, you continue to hold us in your prayers. And again, tomorrow at 9 a.m- the time we turn Miles over to surgical team.  Every one's love and support has meant the world to us.   Your strength has given me strength.  Thank you.