A Lil' Boy's Journey to Live….


Hello.  As I’m sure most of you know….we are still at CHOP.  Riley refuses to take a bottle so he is on a continues feed through a NG tube.  He is not happy at all.  He has socks on his hands so he doesn’t pull the tube out, and that is really bothering him.  He likes to express himself with his hands, but he can’t.  I took the socks off earlier to give him a break, and he went right for the tube.  Needless to say the socks had to go back on.  Putting the tube back in is to tramtic to risk it coming out.
We are going to do the G-Tube and Ladds procedure.  We are just not sure exactly when.  It will be very soon though because we have to do it while his veins are stable.  We are hoping to be home for Christmas.  Idealily we would be home sometime over the wkend.  If that is not possible they are discussing giving us a pass to go home for Wed. and Thurs.  When you are here, though, you never know what will happen till it happens.  I just really want Riley home for Christmas.
Also as you may have read from Chris…..2 of Riley’s veins showed mild to moderate obstruction.  Not what we wanted to hear, but he is still considered stable at this point, and Dr. Rome wants to wait before they bring him back into the cath lab.  Now, too, the idea is floating around that if the veins remain stable moving forward with the stage procedures to see how they work out, and if he has issues continuing down the road with one ventricle at that point list him for transplant, but if you have been keeping up with the blogs you know that ideas seem to change all the time.
Right now, though, we are here strictly for the problem with his eating.  He has had a fever a couple times so that is being closely monitored because of his lack of spleen, but for the most part we are here for GI, although we are on the Cardiac floor, but he always will be no matter what he is here for.
Time to get back to the room.  Chris took some pics while she was here so Im sure she’ll post them soon.
Thank you for your support!!

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