Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Friday, April 13, 2012

And the results are in..back to the cath lab we go :(

We had a wonderful Easter, although the MRI results were hanging above my head like a big, dark cloud.  Xavier and I headed to PA to stay with my parents while Nate, the bread winner, went to work in Maryland.  We really missed him on Xavier's first Easter.  However, I am glad that I made the decision to go to PA and not stay home alone.  We enjoyed being with family and visiting with friends. Xavier was happy most of the time, except for at night.  His teeth were keeping him up.

 Xavier coloring eggs with Connor and Nanna

 Babies first Easter Basket
The Easter Bunny Came to PA!!

We arrived home to NJ continued the waiting game for the MRI results.  Finally after not hearing anything for a week I called.  I found out that the reason that we had not heard anything was that our cardiologist had to take a personal leave of absence and that they were waiting for someone else to read the MRI.  I was assured that I would hear something by the end of the week.  The neurologist, Dr. Licht called on Thursday with excellent news.  His brain looks great.  No clots, no damage, developing nicely.  More gray and white matter...all is well in the land of Xavier's brain.  He wants to keep him on the Lovenox for a while longer.  We will revisit going off in June.   

Finally, on Friday afternoon I got a call from Dr. Bird, whom I have never met.  He told me that he works closely with Dr. Wernovsky and that he had spent the afternoon looking at Xavier's MRI.  He said that it looks good with the exception of collateral veins that have formed in the heart.  Spider veins that people get in their legs are a form of collateral veins.  They are extra veins that the body creates when it is not getting the amount of circulation that it thinks it should get.  It is very common in HLHS babies.  These veins are causing his heart muscle to stretch a bit.  Good news first, it is not the leaky valve that is stretching out the heart.  The leak is the same if not a bit better.  Bad news:  These veins will most likely mean a trip into the cath lab to coil those veins off so the blood can not get to them.  That will mean more blood going to the body (higher sats), less volume to the heart (his heart will have to work less) and less volume mean less leaking in the after the coil the leak will be even better.  These veins can grow back after the coil, but once he has his third surgery (Fontan) these veins tend to dissipate.

SOOOOO....not 100% what I wanted to hear but not horrible.  I hate that he will be under sedation again..and that there is always a risk of stroke during a cath.  However, Xavier did well with his last cath and it is a pretty simple fix.  The cardiologist at CHOP that we spoke with said this is to be expected and that it is not something to worry too much about.  I just hope that they get him in soon.  To be honest it is the waiting that really drives me bananas.  I know that this is what needs to be done in order to help his heart function better and stay strong and get him to 3 or 4 safely in order to be a good candidate for the Fontan.  I am very happy that the valve is not the culprit.  Dr. Fernandes always says "we don't want to have to mess with those valves if we don't have to".  At the end of the day, I wish they said that it was nothing..but I guess we kinda knew going in that something was stretching out the bottom part of the heart.  I guess this is the least worrisome thing.  By the way the conversation went today, once less volume is in the heart, it should go back to normal size.  

Please keep Xavier and his doctors in your daily prayers.  I have a very strong faith and I know that God is holding Xavier's heart tenderly in his hands.  I prayed day in and day out that his valve was not getting worse.  My prayer was answered.  I know that God will hear my prayers to keep Xavier safe during the cath and that this coil procedure will be a success.  All good and wonderful things are because of the Lord, including the work being done at CHOP.  Xavier is doing well and thriving despite the veins, so I just keep telling myself that he will be even better when this procedure is done.  Once we have a date I will let you all know.  

1 comment:

  1. Hi, Jackie. Keeping you, Xavier and family in my prayers! Keep the faith! love, Gwen