The Waiting (Room) Game

Josiah’s open-heart surgery started around 1:00 PM.  We met with the surgeon this morning.  He explained that there has been lots of debate regarding which procedures Josiah needs, as his anatomy is so complex.  The meetings in which Josiah and the other heart cases are discussed have around 50 people, including cardiologists, surgeons, fellows, etc.  We learned there are 22 cardiologists at SickKids. 

They have decided to attempt the Bilateral Bidirectional Cavopulmonary Shunt (formerly called the Glenn) in addition to fixing the pulmonary veins.  If they do these procedures and the pressure is still too high, they may need to reverse the Glenn and perform a BT Shunt instead.  If the Glenn works, Josiah will need one less surgery.  The Glenn procedure will result in his two superior vena cava being attached to his pulmonary arteries so that blood from his upper body will flow passively to his lungs without going through the heart first. 

Because Josiah is only four months old, they expect that the resistance in the lungs will be high and thus he will have swelling and his eyelids will be puffy after the operation.  They will use medications to control the resistance in his lungs and this usually calms down after a few days.  The procedures today will also better protect his main valve from leakage because the heart won’t have to work as hard going forward.

The surgeon wouldn’t give us an estimated time for completing the surgery but the anesthetist estimated about 4-8 hours.  Apparently no news is good news and we are not to watch the clock.  The surgeon said the surgery is neither low risk nor high risk but somewhere in between.  There will be two surgeons, two anesthetists, two nurses, and two people working the heart-lung machine during the surgery. 

We have camped out in the waiting area on the second floor near the windows, as they want at least one parent available at all times.  It’s a beautiful day outside with lots of sunlight coming in.

A family that has gone through similar circumstances with their son came by to see us this morning, as it just happened to be their son’s annual heart checkup.  Another of God’s perfectly timed blessings.  It is always great to be able to chat with others who have experienced the roller coaster too.

We’ll try to post again post-surgery once we know a bit more.  Once the surgeon finishes and can speak with us, it will be at least another hour before we can go and see Josiah. 

A few friends have recommended Matt Redman's "Never Once" song to us.  It seems especially appropriate as it even talks about the coming scars.  We took one last scar-free photo of Josiah before his surgery.  His eyes were open as we kissed him good-bye.  He gave us another smile this morning. 

Thanks again for all the prayers and encouraging words these last months.

Blessings,

Elizabeth and Graham