Thursday, May 19, 2011

Brotherly Love

The other day Zac said the sweetest thing ever, "David is exactly the little brother that I always wanted.  I hope I get to take care of him forever".  We have never discussed Zac taking care of David now or in the future.  We do tell him that David does things a little slower than some kids and he is well aware that David has some eating challenges and a bad heart.  So was it just some random statement or is it that he deep down is already seeing that David needs a great big brother in his life.  Right now I get such pleasure from seeing them interact.  David's favorite person in the world is Zac.  And Zac is very tolerant of a little brother pulling his hair and ears.  I am so lucky to have so much love in my life I thought I would share it with you in these pictures.

Sunday, May 1, 2011

Leave Well Enough Alone

Clear As Mud
Decision by Coin Toss
The Roller Coaster Ride Continues
The Waiting Game

All of these could be titles for this post.  It is about the decision for David's heart surgery.  The cath showed his pulmonary pressures were down, a little.  The goal was under 4 with medical intervention, his number was 4.6.  So that started the discussions and so going on two weeks after the cath the discussions continue.  What is the risk/benefit ratio, that is the million dollar question. 

We will start with the risk.  If he did not have pulmonary hypertension and he had this specific open heart surgery, his risk of death is 1-2%.  With his high pulmonary hypertension the risk of death becomes 5-8%.  This may sound like a pretty low risk to you, but this is my baby's life. 

Now on to the benefit.  We are waiting for Chief of Cardiology to return from Disneyland.  But previous discussions have been that the benefit is undetermined.  There is a chance that the pulmonary hypertension is caused by the large VSD in his heart, but they do not know this for sure.  There is a chance that his feeding issues would be improved once the VSD is repaired.  There is a chance that things will get worse if his heart is not repaired.

Typically the team is certain that heart surgery is the best option.  Typically a child would be in heart failure.  Typically the risk would be low.  Have I said before that David is not typical.  I am not saying he is not typical because he has Down syndrome.  He is not typical for a baby with Down syndrome.  David was born with fetal hydrops and pulmonary hypertension these happen more often in infants with Down syndrome but not typically.  David does not have the typical heart defect for a baby with Down syndrome.  His VSD is not even typical the team had a tough time determining the size of the VSD as it presents differently in different types of imaging.

Maybe we should leave well enough alone.  Maybe we should let sleeping dogs lie.  Maybe we just need to believe that this is how his body functions best right now.  Maybe we should just let his mommy and daddy enjoy him for another year without worrying about these things.  Maybe someday it will be a clear decision and that will be the right time.  Maybe there is no right time.