A Lil' Boy's Journey to Live….


As many of you may already know…Riley was discharged Monday from CHOP. 

The Cath went ok.  The two good veins still look ok.  Of course they still had to be ballooned, but there hanging in there.  The third one is hanging in too!  Dr. Rome was able to dilate it some.  I’ll take some!  It’s better then it being gone!  He is not sure if it will be hanging on at the next Cath, but at least we got through one!

After the Cath Riley went back to the CICU.  He seemed to be recovering ok.  His lungs seemed a little “Junkie”, but that was assumed to be because of the Cath.  So Saturday they kept us because of the junkie lungs situation.  Then Sunday morning he wakes up, and now his noise is runny.  GREAT!  I talk to Dr. Hanna about it, and in conversation mentioned that my parents said that Christian had started coughing.  Well…..he sent us right back to the room.  Riley gets some noise goodies suctioned out, and it’s sent down for testing.  Few fours later….Riley has Rhinovirus.  Pretty much a cold, but to a child as complex as Riley nothing is the same.  So they first say we’re there for 5 days!  Wasn’t looking forward to that!  Riley was miserable!  Thank God on Monday Dr. Hanna came in, and told us we could go home.  HOORAY!!  We just have to watch his pulse ox, and do chest pt.

Well I’ll tell you the minute we got in the car Riley was a changed child.  I don’t think he fussed at all the first day we were home.  Now….he’s doing ok.  Still has the runny nose, and a little cough, but it’s getting better.

He was put on hold for transplant.  Dr. Hanna said one wk, but Dr. Goldfarb’s side is saying something else.  We’ll see Monday when we are ALL going to CHOP for an Educational Day on Heart/Lung Transplant.

Here are some pics from Wednesday.  Two days after discharge and he’s back to Riley!  BEAUTIFUL 🙂

Riley and his girl Jackie



Hard to believe this BEAUTIFUL child is sooo Sick!

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