Friday, November 8, 2013

A medical update

Mateo had his routine check up with the cardiologist yesterday.  We asked for prayers and a lot of people have asked how his visit with his doctor went so I wanted to update everyone.  Prayers have been answered in a positive way!  Mateo had an echo (basically an ultrasound of his heart) as well as a couple of other tests.  We spoke to his cardiologist and she gave us the most positive and the highest compliments about his health that we could have hoped for.  Mateo's heart is doing SO well.  For those that aren't very familiar in the way of medical terminology, please bear with me for a minute.  All that's really important out of this is that its good news :) 

Mateo's heart function is good.  No.  Its better than good.  Its fantastic.  He has slight tricuspid valve regurgitation but nothing that is detrimental or needs to be interfered with.  His ASD is wide open.  No venous congestion.  Low pressures and flow from top to bottom.  Everything just looks really, really good!  Folks...his O2 saturation was 99-100%..!!!!!!  This is very rare for a Fontan anatomy (just referring to the non-normal physiology that Mateo now has due to all his surgeries and the manipulation of his circulation).  The nurse kept checking and rechecking the pulse ox and thought it wasn't working right so she used a different one which read the same.  His cardiologist is very pleased.  She said that as far as HLHS patients go, Mateo has one of the best physiological outcomes and tolerance of the Fontan anatomy that she has seen.  We were able to discontinue one of his medications, leaving him only on two meds a day. 
We have come so far.  Mateo has come so far.  His O2 sats used to sit at barely 65%.  He used to have a feeding tube that had been surgically placed through his stomach.  He was in physical therapy, speech therapy and feeding therapy.  At one time, Mateo was taking 7+ meds, several times a day.  Out of the children born with this heart defect, only 50% make it to 5 years of age.  ONLY 50%. 

So Mateo is doing fantastic. But.  There's always a "but" isn't there?  The "but" is...we have lots of hope for the future, but lots to be concerned about as well.  Mateo's anatomy has been altered and with that, there are consequences.  His body does not work naturally the way its supposed to and it has been manipulated which means there are consequences.  Its true that there are not a lot of long-term statistics.  The oldest person alive with similarities to Mateo's condition is only in his early 30s.  But more and more children born with heart defects are living longer.  This is creating a demand for research.  A demand to raise those statistics.  A need to find better ways of treatment to help eliminate the side affects of this manipulated anatomy.  Mateo has had the 3 stages of "corrective" surgery.  But these surgeries are not perfect.  I have said this before and will say it again....he is not cured.  These surgeries are palliative.  They don't fix his heart, they don't cure him of his defect and they are temporary.  These surgeries buy us precious time.  They give Mateo a chance to live a somewhat normal childhood.  To hopefully grow into adulthood. 

But there are side affects to the Fontan anatomy.  One of those side affects is how it affects the liver.  Many of these children are growing up to have liver problems later on.  Liver fibroses, liver congestion, liver failure.  And according to Mateo's cardiologist...this is not an issue of if it happens...its when.  So of course early detection is key.  For his hospital, it has become routine to follow the liver and its function beginning at the age of 8 years old.
Fontan anatomy can also bring about PLE or protein losing enteropathy which is a whole host of bad news.  If interested, you can find out more about PLE here
Long-term, the Fontan can bring about vein issues like Chronic Venous Insufficiency and DVT.
But knowledge is power.  As more and more children born with a CHD are becoming adults, the experts are finding out the problems with the Fontan and trying to tweak and correct and change the outcomes.  Mateo is past the point for a lot of the changes that have been made and much of the new and up and coming advances in the surgeries.  His role in this is to be a pioneer in this heart world.  But he is thriving.  God has been so good to him and to us.  God has shown us so much mercy in this CHD world...because it can be so very scary.  So ugly.  And we thank everyone that has sent up a prayer on our behalf.  While we give the glory to God, we couldn't have done it without all of you.  Your thoughts and prayers have carried us through so many of the dark moments.  For now we are on the other side of all of this....having reached that light at the end of the tunnel...if only for a moment...we will enjoy it.  The worries about tomorrow can certainly wait.  We have a lot of life to live while we have it and we are choosing to push aside fear and instead....we're enjoying every moment.

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