A Lil' Boy's Journey to Live….


Hello…I know that Chris has been updating, but I thought I would drop a few lines.  I have run home to get some clothes.  Riley is at CHOP with his Daddy and Granny.  Today is another day that he will not be discharged.  They still are not satisfied with the pulse in his right foot.  They need that artery to be nice and strong because they know that they will need it again for future Caths.  He is currently on Heperin.  Every four hours they check his PTT’s, and they still aren’t where they want them to be.  Riley’s poor arm and hand is black and blue from being stuck so many times.  There was a thought of putting in an IV they could draw from, but they keep thinking he is going to leave and then he doesnt.  He is really handling it all very well, though. 
We are still not sure, exactly, when we are going home.  The thought is now tomorrow, but one of the Fellows came in and mentioned staying until his surgery.  I brought that up to the Attending during rounds and he said that he wasn’t sure at this point.  The Fellow told me she spoke to Dr. Spray, Riley’s surgeon, and he agreed to move one of his other pts. out of his schedule for the wk of the 7th to put Riley in.  Now I don’t know if he had the idea of keeping Riley or if the Fellow just was thinking it herself.  Either way, the only thing that the Attending would say for certain is that we have to stay till at least Monday.  I will do whatever is best for Riley.  If coming home is a concern to them then we stay.  I would like to bring him home, but I know I’m going to be more of a wreck then I already have been.  The thought that he only has one lung that is functioning well is scary, but if they let us come home tomorrow I will be sure to enjoy the wk that I have with him before I have to bring him back.
Dr. Rome was sure to remind us that fixing Riley’s veins with Heterotaxy is extremely difficult.  I told him, as well as Riley Cardiologist, that they have to!!!  There is no way around it…they have to fix him by any means possible…I cant imagine my world without Riley in it!
So in the end I ask you all to pray!  I know it has been said so many times, but God is the only one that can truely decide what will happen.  He needs to give these doctors the ability to fix Riley’s heart, and Riley the power to get throught it.

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