Wednesday, March 6, 2013

Staying Strong

Gavin has been doing really well lately.  He is 10 lbs 2 oz and steadily putting on weight.  The growth charts are now on a steady incline!  Last Monday, Gavin had another echocardiogram to examine how his heart is doing after the last cath lab procedure.  He was such a pro during the whole thing.  He laid completely still and just cooed the whole time.  The results of the echo showed that Gavin's right pulmonary artery was measuring at a 10, but his left pulmonary artery (LPA) was still at about a 5 which is where it was before he went into the cath lab.  The angioplasty did not hold.

Our last visit to the cath lab, the cardiologist decided against putting a stent in Gavin's heart, because the area where the stent needed to be placed would have caused it to cross over into another artery.  This was because of Gavin's size and his heart being so small.  As he grows, and as his heart grows with him, more space will develop between those arteries which will cause less concern for the stent placement.  If the stent nicks the other artery, or even if it ends up crossing into that artery and causing problems, the only way to repair that would be with open heart surgery.  And no one wants Gavin to go through another open heart procedure so soon, and unnecessarily, after his last one.  But if blood flow is significantly slowed to the left lung, then we are back to concerns about whether or not his left lung will grow and develop normally.  So we were again at a point of having two options, with neither alternative being ideal.

So before rushing into the cath lab, we headed off to radiology for Gavin to get a lung profusion study.  Basically, they lay him in an MRI type machine that takes video of blood flow from his heart to his lungs.  Then, an exact percentage of blood flow can be measured and that measurement is what the cardiologist would base his decision on for our next step.  Gavin, again, was a pro!  He had a full belly of milk and just laid there.  The cardiologist asked me a few days later if Gavin had to be sedated and I told him no.  He said that was great news, because the radiology lab was always trying to sedate patients for that procedure, and now he could use Gavin as an example of a successful exam where the patient did not have to be sedated.  I was proud of my little man for being able to be that example and success story!

Well, the lung profusion study results came back yesterday.  Gavin's right artery has about 62% blood flow and his LPA has about 37%.  That, to the cardiologist, was an acceptable difference to not have to rush Gavin back into the cath lab.  So now we wait another month before we run through this test again.  It's possible that Gavin's LPA may grow on its own, or that any additional time we can buy allows his heart to grow bigger so that the procedure will be safer.  It feels so awesome to be on a roll with the good news lately!

Gavin does have a little cold right now, and he's coughing up a storm and pretty hoarse.  He's been checked out though and it's just a normal cold.  With his heart condition, there's always a concern of fluid building around his heart when he gets sick.  But for now, he just has his first baby cold!  I told Chris that Gavin's hoarse cry was so sad...that it sounded like his "just coming off the ventilator cry."  How strange it is, not only that your child has an "off the ventilator cry", but that you've heard it and been through the process enough that it is a somewhat common sound.

It just makes me so grateful for Gavin and what an incredible fighter he is.  While at his last echo, the cardiologist was examining Gavin and just commented on all of Gavin's scars and how Gavin has been through the ringer.  While a little disconcerting coming from a pediatric cardiologist, I had to smile.  Yes Gavin has been put through the ringer.  But he has survived it all.  He has come out of every fight stronger than the one before and he continues to get better with each passing day.  When I hold him and feel his heart beat and listen to his breath, I just have to close my eyes and absorb that miracle into my soul.  And when times get tough, I get look at my son and remind myself, that they have been tougher and we survived that too.  And because of those struggles, we are a stronger family with a stronger faith.

1 comment:

  1. Yay for good news for now! Your Gavin is strong ad is a fighter! Rating he gets over his cold soon and that his heart continues to get better and stronger everyday!


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