A Lil' Boy's Journey to Live….


Riley was released, yesterday, from CHOP after one of our most tear filled visits.  The Cath. itself went well without any complications.  The results of the Cath. are a whole different story!  We were thinking that we were possibly moving forward to stage 2, or at least moving forward in the same fashion we have been.  Boy were we wrong!! 

Riley’s upper left pulmonary vein is completely gone!  It is totally occluded.  Apparently beyond where Dr. Rome had previously placed a stent is just not there anymore.  He believes that the lower right pulmonary vein is going to be soon to follow.  The LRPV is already not functioning well.  So the belief is that the loss of it won’t be huge, because it already doesn’t carry much blood flow, but that would then leave Riley with only 2 of his 4 pulmonary veins!  He can live for a while like that, but not forever, especially when Dr. Rome says that disease is winning!  Eventually the other 2 veins could follow.  That all being said…….we are left with only one option.  The one options that we were never even considering because the survival rate is sooo low has now become our ONLY option for Riley to ever survive!  Heart-lung transplant!!  At this point we are in the process of already getting Riley listed.  How could we not??  I can’t sit here and just watch him die!  We have to do everything at this point to keep him alive!  I really don’t feel like I’m being selfish…..I just have to believe that Riley is going to be in the small percentage that survives!  There are children that do, and Riley will HAVE to be one of them!! 

We have already spoke to, Dr. Hanna, who is now our new transplant cardiologist, in addition to Dr. Szwast.  We have also meet with Dr. Goldfarb, who is from the lung transplant team.  No time has been wasted getting the ball rolling.  This Friday we meet with Dr. Hanna and also have pre-transplant blood work done.  Next Friday, Riley already has his feeding clinic consultation scheduled, which we are doing, and then we will go meet with Dr. Goldfarb.  The whole listing process should take between 2-3 wks.  The doctors don’t believe at this time that there is any reason not to list Riley, but there is a whole process to go through that involves about 25 people.  At the end we will all get together and lay everything out on the table.  Assuming that they will list Riley it is ultimately up to Darren and I.  I think we’re sure of our decision already!  I will do my best to keep everyone informed of whats going on.

I do have to throw a couple Thank You’s out there!  Thank You to Rebecca and Sean McClain for happening to be there at the right time!  Before my family had arrived they had became my shoulder to cry on.  I felt bad because they we’re there for their son, Ryan, to have a MRI, and I came in crying about Riley, but they/you were wonderful!  Thank You to Barb and Jackie for coming up, and sitting with Riley so we could eat dinner.  Thank you, too, for sitting in McDonald’s with me for about an hour, and sharing my tears!  I couldn’t ask for better friends!!  Thank You Mary Kay for once again leaving work to come up and comfort us.  I know that I can ALWAYS count on you to be there!  Thank You Chris, Mom and Charles for coming up to CHOP.  It was great to be surrounded by my family and friends on that life altering day!

Now it’s time to run.  Riley is having O.T. in 5 minutes. 

Please pray for Riley!!  God is not ready for him, yet, and we need to make him understand that!!


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