Friday, September 16, 2016

One Day at a Time.

As most of you will know, about two months ago Jake's case was discussed at Sick Kids and he was accepted for his Fontan surgery.  We have spent two months constantly checking the mailbox and our phones for a date for the Heart Cath that would start off this journey for Jake.  Then, it was communicated to us that Jake's Fontan is considered an elective procedure because he is "well" compared the huge critical caseload in from of the cardiac surgeons.  The average time for a elective cardiac procedure is now 10-12 months at Sick Kids.  BUT... We got even better news today --- because Jake was supposed to have this Fontan procedure months ago, he's not at the bottom of that list.  The delay in surgery was due to Jake's small size and he is finally *thisclose* to the weight goal of 33 lbs (about one pound away!).  So, we have been told that Jake's wait is more like six months - but we are already two months into that becomes four months...We are anticipating surgery early in 2017.

This is a mixed bottle of emotions though.  On the one hand, I don't want Jake's heart stopped and his little body opened up anytime soon.  On the other hand, his decline has been significant over the summer.  You will notice the next time you are near him, a nearly constant blueness to his face/fingers/toes.  He breathes hard and fast from small bouts of physical activity.  And his oxygen saturations are keeping lower than normal.  My fear is that before this surgery is scheduled, Jake will be sick --- sick enough to affect the success rate of the Fontan.  I'm leaving this in the hands of the Great Physician though.  He has not failed Jake yet.

So there we are...while it's not a specific date, it's a narrowed time frame and I'm thankful for that.

And I got the biggest smile on my face when Jake's cardiac Surgeon, who has done all of Jake's open hearts to date, responded to my emailing him the latest picture of Jake with this line....

"Wow! He looks great!"

Such a simple sentence, but for me...coming from the head of cardiac surgery at Sick Kids Hospital....this is a huge affirmation that Jake is ok.  So, we are taking this as a blessing, because otherwise we will lose our minds worrying about the timing.  I'm vowing to trust.  One day at a time.

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