The Journey of a Sweet Little Boy and His Special Heart

Friday, February 15, 2013

This week is CHD awareness week.  It has been a hard week for me.  Instead of going out and buying every heart themed item out there and wearing red every day, I have just wanted to ignore it.  Can you be mad at CHD's like you can be mad at a friend that has betrayed you?
My thoughts this week have been along the lines of how unfair and deceiving these heart defects can be.  I look at my perfect little Logan and get frustrated that he looks perfect from the outside, but you never know if things are working well on the inside.  Does that make sense?
I have been driving myself insane this week trying to figure his little heart out.  I check his sats several times a day... they are never the same.  Sometimes he is rocking out at an awesome 85% and other times he is hanging on at 74% or even better after climbing the stairs a whopping 53%.  We have also been noticing little "episodes" where he will hold his chest as he is trying to catch his breath from exertion and tells us it hurts.  I tell you it is driving me crazy because there are moments he acts perfectly fine, but then moments I wonder if we should be rushing him to the hospital.  You should see all the grey hair I am sporting now!
We have been in touch with his cardiologist and he will see him in a few days... But then I stress again that he will think I am a loony, over-reactive mom because Logan will probably be having a good day that day and everything will "appear" normal.   At least Brad has been there for a few of these episodes and if it freaks him out then I know I am not ALL crazy (just only kind of)!
His cardiologist wanted us to see if we could get him wearing oxygen more during the day, at first this felt impossible because Logan was afraid of the cannula (I am sure it reminds him of the hospital), but after leaving it in his toy box for a few days and putting it on his stuffed animals and brother, sister, and dad we finally convinced him to give it a try.  I think he has noticed he feels better with it on because there have been a few times he has asked us to put it on him. 
 
One night Brad just sat on the couch with him wearing a cannula the whole time.  What an awesome dad he has!

 And like I said, he look PERFECT most of the time!
 

2 comments:

  1. We have that same shirt for our 2 and a half year old...:)

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