A Lil' Boy's Journey to Live….


Riley had appts. last Thursday at CHOP to see the Transplant doctors.  Everything went fine, except for the conversations that took place!  Riley WILL NOT have a Cath. in 2 wks as originally thought.  We already knew that Riley was at high risk during Caths, but with the progression of his disease he is at EXTREME high risk for well….death!  So now we will depend on his echos and pulse ox to determine if he truly needs a Cath.  That’s a little scary for me because for 23 months of his life either have been dependable.  There is no good answer here except for transplant, and even that is not a perfect answer, but its the only hope we have! 

I told the doc it made me nervous not to do the Cath, because we can’t afford for another vein to disappear, and he pretty much told me…Cath or no Cath the veins will disappear!  That is what happens with this “Horrible Disease!”  So I asked…..then how much time do we have to get Riley transplant?  He answered……”6 months….well…..3 months….this disease is progressing rapidly!”   Can you imagine a doctor telling you your son has 3-6 months to live if he does not get transplanted??  It’s mind boggling!! I wouldn’t wish any of this on anyone!! 

Riley also had blood work Thursday.  They are testing his antibody level.  If it is elevated then he will be admitted to “clean his blood.”  I guess it’s like a transfusion.  We don’t want his antibody level to high, though, or when he gets transplanted they’ll just start attacking the new organs.  The results take about a week so we should know this week what’s going on.

On a little lighter note…….Riley got his Sure Step braces so hopefully that will help him get over this last hurdle of walking.

Also…..yesterday Riley ate some pears (baby food) willingly!!  He opened his mouth and all.  Even after gagging he was willing to take more!!  He did get to a point that he was “all done” but the fact that he was even willing to take the spoon was enough for me!!

Sooo…that’s really all for now!!  When I know the blood test results I will post again.

Thank you everyone for your thoughts and prayers!!  We need to keep praying..LOUD….God needs to save my son not take him!!


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