Riley Update - Warning He's Half Naked

I realize my last post was pretty pitiful and it is definitely time for an update on Riley's situation. He is doing much better. He is eating well now, however he still has a lot of weight to put back on.(Wish I could give him some of mine.) His first question after any meal is what we are having for the next, so I think I'll take that as a good sign. ;) We went back to Atlanta last week for a follow up appointment. The ride up was miserable for him. He kept saying his tail hurt and he had a really boney butt bone before he lost weight and it's even worse now, so we just assumed that was the problem and kept adding pillows to his carseat. Well, by the time we got to Atlanta and stopped to eat he was just crying and didn't want to eat. He just laid down on the bench with his head in my lap. When we got to Ronald McDonald house he didn't want to sit or stand the only way he was comfortable was laying down. We determined after much questioning and hair pulling (mine of course) that it wasn't his tailbone, but actually in his abdomen that was hurting. We finally called the urologists office to see what they thought. Thankfully Riley's uro was the one on call. He said it sounded like bladder spasms to him and asked us if we had been giving him the Ditropan for it. HUH? What Ditropan? We never got that prescription. Anyway he told us to give Riley some Tylenol since he was comfortable laying down and he would see us in the morning. Well, after a pathetic nights sleep we went to the appt and had Riley's staples removed, and the doc looked Riley over. It went fairly well. There was some drama with the staples, and we found out why when we tried to flush one of the tubes we are supposed to flush everyday that the water just shot back out at us - the resident that stitched the tube in place stitched through the tube so there was a hole in it! We also got the Ditropan and things are much much better. One wonderful side effect is that it may cause drowsiness, so we had a very quiet ride home. Also, Riley had bloodwork done using his new port. (See pictures below)We go back next week to have the one tube removed and to begin cathing Riley's bladder. I'm both excited and nervous for this next step. It gets us one step closer to normal though. His personality (and attitude) have mostly returned. He wants so bad to have no tubes and go swimming. Soon enough my little man!

He's cuttin' a rug. The tube that comes out next week is taped to his right leg. The other tube has a bag on it and is secured to his left leg. They really seem to slow him down!

Here his old catheter is gone. No more dressing changes!

Here's a reminder of his old catheter. We don't miss it!