18 August 2013

Boston.... We're really going to Boston? Heart Update

Okay friends... I haven't posted about Luke's heart in a while.  Fortunately in our case, no news was good news... we've been enjoying the summer as much as possible and for the most part, Luke's heath lately has been exceptionally normal on the outside! Unfortunately, looks can be deceiving as we know the anatomy of his heart isn't quite right. 

Although we've been happy in the Cleveland Clinic network, we thought we owed it to Luke to do some additional research and earlier this summer, we sought second and third cardiology opinions from Nationwide Children's Hospital and also Boston Children's Hospital.  We've also been blessed over the last few months to be introduced to a couple of families from our general geographic area who have children with heart issues more complicated than what we believe we're dealing with as far as Luke is concerned and they have all utilized Boston's surgery program and have had outstanding results.  Our insurance seems to be aligned with what we believe Luke's needs will be for surgery and with that peace of mind, we have decided to make the trip to Boston Children's Hospital to complete Luke's repair!  We will follow with our Cleveland Clinic cardiologist before and after we go to Boston and expect that she will be with us on this journey for the long haul... we've developed a good rapport with her and are confident in the level of care she has been providing for Luke.

Present Day
We are now waiting for the Surgical Office from Boston Children's to contact us to determine and schedule our official date for surgery and we are anticipating that it will be sometime in the late winter or early spring of 2014.  The best part about the surgery is that we found out last week that we are getting the surgeon we were hoping for!  We are aware of some children who are patients of his whose parents have given us excellent recommendations and it feels comforting to have some sort of connection... I am nervous, but am also looking forward to getting this behind us and moving on to the next chapter of what's to come in our lives, this will by far be the biggest, most intense thing I'll have ever gone through in my entire life and will be grateful when it's in the rear view mirror! 

I mentioned earlier that Luke's health indicators have been normal on the outside and that gives us a lot of comfort when it comes to caring for him day to day right now... he has good color (he never gives us any cyanotic episodes of turning blue or purple), he doesn't have any shortness of breath, he is eating well and continuing to grow, he doesn't really seem to ever be in distress (except for our issues with constipation, but his GI stuff is best kept for another conversation) and he generally appears to be happy.  Hopefully all that stays the same because if it were to start changing, we would likely be having surgery sooner. 

Please continue to pray for health for our sweet boy Luke!  I promise to update again when we have a date to work from!

1 comment:

  1. Praying Luke stays well and he doesn't need surgery sooner! That's great that you are getting the surgeon you want!