A Lil' Boy's Journey to Live….

Archive for November, 2010



Sorry for the delay! Riley is HOME ♥

Cath went well…Thank God ♥

I almost feel like its when you take your car in for an oil change every 3,000 miles…that’s like Riley …every so many miles he needs his tune up to keep the car (Riley) runnin’ ♥

Back to Praying for Transplant ♥


Riley Pre Cath…..

   Mommy and Dr. Rome (Cath Attending)


Riley and Mommy……Post Cath.. Riley, Mommy, Bernie, Barbara, Jackie and Kerri (RN)


This is Jilly…..A Very Special…Beautiful Lil’ Girl who is hitting Every Bump in her CHD Journey!  Just last week she had to have her Fontain which was just performed 9 days prior taken down because it filled with clots!  It is believed that on Sunday she may have suffered from a stroke(2nd).  She is not stable enough for a MRI at this time to know for sure.

Please Add Jilly to your prayers and her mother, Joy, who hasn’t left her bedside at CHOP since they got there….this time.  They had just left CHOP in June after a 4 month stay….Joy also by her side that time and every other time before that!!  Thank You….

Jilly has a Group on FB…. Pray for Jilly


Riley’s Cath has been scheduled for Wednesday 11/10. That was pretty fast scheduling, but last time there were some issues soo!

Pretesting on Tuesday then admitted to the CICU post Cath.

Please pray there are no complications ♥


Riley saw Dr. Hanna today. Pretty routine visit. Riley does weigh 24 lbs now!! So he’s growing….slowly…but growing all the same!

Of course the conversation of cathing Riley was had. It’s really such a hard thing to decide on….for u…s and the doctors! If we go by Riley’s history then he is due if not over due for a cath. The problem is history has continued to move forward there for changing other things with Riley. Yes…he most likely needs intervention…he always does, but because of the changes to his antimony every time we do a cath it’s more dangerous then the last! Dr. Hanna spoke seriously today about Riley possibly having a stroke during the Cath. He did kinda then down play it some and said….. it could be a minor stroke, but a stroke of any nature will result in him having to be removed from the transplant list for 6 weeks!
Actually if you read back to older posts I’ve written I think they will pretty much read the same!

Sooo what to do? Do we not cath him and risk the strong possibility of his remaining veins totally occluding off there for leaving no connection between his heart and lungs! That would result in Riley needing to go on ECMO or heart-lung bypass. That is a very Short term solution that would lead us to having to make even harder decisions. Or do we cath him and pray to God that his vein doesn’t rupture or cause Riley to have a stroke? Its like a balloon that has been blown up over and over again. At some point its going to Pop!
Decision…..Riley will be Cathed within the next 2 weeks. To sit and do nothing and Know what the result of that will be really isn’t a choice for me! Yes…Riley’s risks for a cath are through the roof, but cathing him will give him a chance….buy him time till he can get his New organs! Everything with Riley is a risk, but he’s our fighter and the fights not over! I will post when I know when the Cath is.

One last note…..Riley did have an offer last night! Hooray! Obviously he didn’t get transplanted, but an offer gives us Hope! Tomorrow will be one year Riley has been waiting….We/He are Ready ♥




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