The Journey of a Sweet Little Boy and His Special Heart

Friday, October 8, 2010


I feel like I just got punched in the gut.  Brad and I were just talking on the phone discussing our plans for the weekend when he says, "Oh that is the cardiologist calling my cell phone, I will call you back."  About 30 min. later he called back.  Dr. Mack, called and talked for a minute about the Cath and the scare we had yesterday and then he said, "Well, Dr. Kaza wants us to go ahead and schedule his Glenn."  Brad I think about fell out of his chair.  He was like, wait a minute let's back up.  After the Cath we were feeling pretty comfortable that the Glenn was still a ways off.  After a long conversation with Dr. Mack it has come down to doctor's not agreeing on the same thing.  Dr. Mack and Dr. Cowley (the doc who did the Cath) both feel like Logan has time to wait before his next surgery, but for some reason- I don't think we have all the facts yet, Dr. Kaza thinks we should do it now.  We also got more bad news.  The last few appointments we have seen that the position of his overriding tricuspid valve was looking more promising to be able to patch his VSD.  This was GREAT news because that would mean he would have a 1 1/2 ventricle repair and not need the Fontan.  Dr. Mack said today that Dr. Kaza wasn't thinking it was very likely he would be able to repair the VSD not because of the position of the valve, but because the valve is not functioning  properly.  This was the biggest blow.  If he gets the Fontan he will most likely need a heart transplant down the road, and they have more limitations throughout their life.  This was just heart breaking news for me as his mom. 
Brad told Dr. Mack we weren't ready to schedule the surgery.  We needed time to think about this because just minutes before we again thought we had months before surgery.  After Brad told Dr. Mack this he sounded relieved.  Brad told him we wanted to get some second opinions.  Dr. Mack was completely on board with this.  He said he would get copies of all Logan's recent Echo's and his Cath together for us to send out for more opinions.  I called his pediatrician too and he gave me a name of another surgeon to contact to get a second opinion. 
So here we are.  This morning I just got done telling my neighbor that all was well and hopefully we wouldn't have anything going on again for a few months.... and now we are looking surgery straight in the face.
I wish I understood more, and I wish medicine didn't have to be so variable.  I trust the doctors, but I also know they don't know everything.  It is so hard to trust them with the life of my child.  My dad keeps reminding me that we don't trust entirely in the arm of flesh, but we have to trust God.  I know this, and I hope somehow we find peace with a decision.  If it comes down to us needed to go out of state to give Logan the best care, that is what we will do.  Some how this will all work out- It has to.

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