Today, Riley got to go on another stroller ride after I requested it. It was a really nice, warm day here, so we took him outside. He seemed to enjoy it, and did a lot of looking around. Hopefully, a little fresh air did him some good.
His bottle feeds, that I was so excited about yesterday, were taken away just as quickly as they were started. :o( He vomited after both of them, and they were such pitiful little amounts too. Dr. sharaf is concerned that Riley could have something called Pyloric Stenosis (again with the spelling??). He may NOT. But, because of the vomiting, he'd prefer to check for this before continuing the feeds by mouth. So Riley will have an ultrasound of his stomach tomorrow or Monday to either confirm or rule this out. Treatment for Pyloric stenosis? Surgery. UGH. I'm hoping that the surgeon here could do this one if this turns out to be true. If it's NOT Pyloric Stenosis, then it's Reflux, which we were told he had severe reflux after the last GI if you recall. BUT the pyloric stenosis has similar symptoms so it really could be either. as for which is the best case scenario?? I have no idea. The PS would need surgery. However, after some googling, it seems to ME that after that surgery, he'd be good to go. If its reflux, it's likely the very severe kind called Gastroesophageal Reflux disease or GERD. This can be a loooooooooooooooooong road. Truthfully, from what I've read, I think I'm hoping for the PS. I think it'll be the easier diagnosis for Riley to overcome. I'm just concerned that would mean he'd have to return to Duke for the surgery and I swear I cannot handle him making that trip again. so once again, there is no win. But as always, Riley is smiling and laughing about it all.
Travis has continued to do well and even requested pizza for dinner tonight. He has split his days between Jay and I as we split our time at the hospital with Riley. Tonight, he royally beat me at Connect Four. Last night he and I watched Wall-E. That is my new favorite movie I do believe. Haven't watched Kung-Fu Panda yet so we'll see how it rates next to Wall-E.
I took this picture today, and after looking at it tonight, I thought I'd post it so you could see the Broviac better. I know I've posted pictures before of it, but here, you can see it without the little disc that covers where it comes out of the skin. If you look, the white tube on his chest loops under the Tegaderm dressing and then just goes in his skin. That tunnels just underneath the skin up towards his left collarbone. This is where there is a teeny tiny little scar from an incision where it was inserted into his left sub-clavian vein. There it goes down INTO his heart. You can feel the tube under his skin. freaky.Oh the black stuff where the tube meets his skin are sutures. They will stay there until the Broviac is removed. Towards the bottom-right of the picture, you can see a little clamp on the tube. This is there to clamp the tube off when there is nothing connected to it. Remember it goes straight into his heart? well. blood can backflow down this tube and that could be bad. so if nothing is connected, it is clamped off, and that prevents anything from flowing out of it. The IV tubing connects to the end of the catheter just beyond the view of this picture. Nothing spectacular there. the dressing has to be changed every 7 days at least, but we have never made it that long as his is always peeling up long before then. We are pretty hyper-vigilant about him and infection now, so anytime we see that thing peeling up to the point that air or bacteria could get under, we insist on a dressing change right away. So there is a little education for you for today. And just as an FYI...we are NOT ashamed or embarrassed over anything that goes on with Riley. We have TONS of pictures of his belly at all stages of his sickness and recovery, but usually we choose to not show them as everyone may not have the cast iron stomachs we have for this sort of thing.Although now, his belly looks GREAT. I have received some questions via email and in person from curious people and we are always willing to share or answer questions, so don't feel funny about asking if your curious. We aren't offended.
See how strong I am now?