A Lil' Boy's Journey to Live….

follow up appt.

Today was Riley’s follow up appt. with his cardiologist.  All started out well.  He weighs 8lbs. 9oz., and is 22 in.  She was happy with his weight.  He seems to be gaining more then 20 grams a day.  His BP was 115/49, and oxygen sats. were 81%.  She believed that he was still surpassing the odds.  We discussed his Stage 2 surgery that she figured would be in the beginning of Sept., and would be where Dr. Spray would remove the shunt, and connect the Superior Vena Cava to the Pulmunary Artery.  She didn’t think, at that point, she would need to see Riley again for 4 wks.
Next we went for the Echo.  I have dreaded the Echo since we left the hospital, and apparently for good reason!  When we went back to see her for the results she said that there was more vein obstruction then there was at the last Echo.  She HATED to tell me this news.  She said that you would never know by looking at him that things werent going great.  So now they want to do a Cardiac Cath.  She was going to talk with another doctor to see when it should be done.  Should it be done sooner rather then later?  She was going to call me tomorrow with the plan.  Until then, though, she decided she wanted to see him back in 2 wks. instead of 4.  Also she wants another Echo at 4 wks.  Needless to say the call didn’t wait for tomorrow.  She called me on my way home from CHOP and said they wanted to do the cath  in 4 wks.  She also isn’t sure now if the next surgery will be in Sept.  We have to see what happens.  They really dont want to do it before he is at least 3 1/2 months, though.  It all depends, I guess, on what happens as we move forward.  Hopefully they wont have to add more vein repair to the next surgery.  More repair means more scar tissue which means more obstruction and we know what follows.
Oh, Riley also saw a Dermatologist yesterday at CHOP for his rash.  He seems to have Atopic Dermatitis, and Seborrheic Dermatitis.  Boils down to Eczema.  The doctor gave us a script for a cream, and wants me to change his bath soap.  Hopefully that will fix the problem.  If not, we go back in 6 wks.  Riley has been blessed with his Daddy’s skin!
I think its time to start praying harder…louder.  Our little miracle is hiding very well that anything is wrong!!
Until later…

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