The day after…

Riley was discharged from the hospital late this morning. Everything went well!  Having to stay in a pod this visit certainly was not Fun, but Riley handled it like a Trooper!  We were in a pod with three other babies all under 3 months old.  We kinda pulled the curtain all the way around and gave Riley his own lil space.  I truly can’t express how Good he was considering his surroundings!  Now…once again on track to either another cath in 8 weeks or Transplant!  Which ever one comes first!

Thank You to CBS 3 and Valerie for putting together a great story on Riley!  Hoping the next story will be on a success Transplant!

Post Cath..

Riley is out of cath. In a pod. He isn’t happy! The Cath was routine but like we all agreed, if we can just stay the course till transplant we’d be ok. For awhile he was getting worse at each cath but for a while .. Now..its been the same. Right now he is just sleepy and Not Happy at the same time. Being in a Pod is hard with a 3yr old!

Still waiting…

Waiting for Cath…

Waiting for Our girl Kathy to come do Riley’s IV…

Friday’s Cath…

Riley is Dr. Rome’s second case on Friday. We have to be at CHOP at 10am. Only downfall to not being first case is there is more of a chance you could get bumped for an emergency. Don’t get me wrong … If Riley was the emergency I would hope the other family would understand….which we do… Its just hard for us going there and preparing for it and then being sent home! Its happened once before with a cath and of course Saturday when we had a “Dry Run”.
Pray Riley’s cath is free of complications! I will update on Friday.
Thank you All As Always for your Love and support!

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Ch 3 News Follow Up after Saturdays Dry Run..

I feel like this picture is so Symbolic! The Lil’ Boy on the ground (With the Oxygen) is getting a Hand Up by the Big Strong Cowboy..lol. Its like Paul (Cowboy) represents the World that has their Hand Out in Support…. Pray … Love to Riley ♥ Thank You….. 🙂

Riley’s Cath..

Riley’s 18th Cath is now scheduled for Friday the 20th. Here we go Again!

Riley

Riley being soooo Good waiting for a Transplant that Never happened!

We are Home….

As many of you may already know…Riley did not get his gift of life today!  We were there for 9 hrs ready to go… IVed and all the consents signed and most of the consults done.  However when Our CHOP team got into the Donor’s operating room it became apparent that both the lungs and  heart were not as good as they looked on paper…As they say!

Very Long…Emotional Day!  It took over a year and seven months for them to get an offer for Riley that was worth them even going to see in person!  I don’t know that we can wait that long again especially if it turns out to be another “Dry Run!”

Thank you to Mary Kay, Chris and Terry who stayed at CHOP with us, and Thank You to EveryOne Literally Everywhere for all your Support today!

In The End…God Bless the Child who Did Pass Away and the Other Children who were Given the Gift Of Life Today!  For Riley….Please continue to Pray……