The Latest News

Mateo saw the cardiologist today.  It was a scheduled appointment, nothing out of the ordinary for us.  He had the usual ECHO and EKG performed.  He is currently weighing in at 29 (almost 30) pounds and has grown to be nearly 39" (3 feet 3 inches!) tall!  He is going to be a very tall kid....definitely from MY side of the family (sorry Mel!).

Overall, the appointment went well.  His ECHO came out great.  His heart function is "great" and still has very minimal, nothing-to-worry-about, tricuspid valve leakage.  His blood pressure was beautiful.  BUT...if you know me, then you know that I am more of a "focus on the details" person, not so much a "big picture" person.  So, while the big picture is that he's doing great and fine.....there are a few smaller details that have drawn some concern.  There aren't any immediate dangers, but things to keep an eye on and, yes, things for me to stress over....because I'm a mom! 

So, the details.  Well, his O2 sats were running a little high.  They were at 88-90%.  I know that sounds good, but for his anatomy and his size, its a red flag.  What has happened, is that Mateo's body has developed something called "collaterals". 

Most in the heart world know what these are, but for those who do not know, I will explain (I was in the "don't know" category before Mateo was born!). 

Normal-heart people tend to have a blood oxygen saturation of 96%-100%.  Because of Mateo's anatomy, his blood oxygen sats have been running 78%-80%.  This means that his blood is not carrying as much oxygen to his body that a heart healthy person's blood does.  Some of his blood remains "un-oxygenated".  Still with me? 

 After a while, his body "realizes" its not getting the oxygen it thinks its needs, so its tries to "fix" the problem by growing extra blood vessels.  The body is thinking, "more blood vessels = more blood which SHOULD = more oxygen".  In theory, that would be correct.  But the body is too smart for its own good and has over thought and over-fixed the issue.  Now, because of collaterals, there is blood shunting to and from places that we don't want it to.  So the cardiologist has to go in, via heart catheterization, to close off (with coils) those extra blood vessels that the body decided to grow. 

This in and of itself isn't a huge issue because Mateo is in need of a pre-surgery heart cath anyway and she'll take care of all the extra collaterals then, if needed.

Also, Mateo's ASD continues to be a source of concern for Dr. Suh (Mateo's cardiologist).  ASD stands for "atrial-septum defect".  This is basically a hole in the wall that divides the left and right sides of his heart.  Right now, its "okay" because only part of his blood flows through that hole.  After his next surgery, ALL of his blood will flow through that hole, so it will need to be much bigger.  The plan is to have the surgeon carve out the ASD and make it bigger during his next surgery.

SO...here's our plan.  I want to spend some time with my family in Wisconsin soon.  Instead of taking care of the collaterals (extra blood vessels) NOW, we will wait.  Dr. Suh's logic is that his O2 sats are currently almost 90% ....which really isn't an immediate danger thing.  But since we're flying, she worries about closing them before then.  If she closes those collaterals now, then that will cause his O2 sats to fall....probably closer to 75-80%. This makes Mateo more cyanotic and he will look "blue" because there won't be as much oxygen in his blood.  Then if we fly, even though the cabin is pressurized, the O2 in the airplane isn't the same as the O2 on the ground and that could make his O2 sats go even lower.  So she feels its best to wait til after our trip sometime to close off those collaterals.  Remember, lower O2 sats means the body isn't receiving optimal amount of oxygen....this includes the brain!  Too low of O2 sats for a too long period of time can cause brain damage.

She's also on vacation sometime coming up.  So factoring everything in, we have decided to see her again on June 6th.  This appointment will be a pre-catheteriztion work-up.  She is expecting it to be an out-patient procedure where Mateo can most likely go home the same night that the cath is performed.

After reviewing the results from the cath, she is going to present it to the "board of surgeons" or whatever they call themselves.  They will decide a surgery "plan" from there.  Mateo WILL be having his 3rd open heart surgery, called the extra-cardiac Fontan, in June.  No more pushing it back.  That's when it WILL be. 

So prayers are appreciated.  I know many of you are praying daily for Mateo already as well as for Mel and me.  We appreciate it so much.  There have been very difficult moments and extremely happy ones as well.  We have a hard summer ahead of us, but I have faith that we'll make it though.