Saturday, December 27, 2008

Stroller rides

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?


Anonymous said...

More wonderful news...sweet baby Riley continue to take and enjoy your stroller rides. So happy you all can be together and enjoy each other...Travis, so happy you are well and beat Mommy one more time at Connect Four!! Love, Pauline

Brad, Kellie, and Carter Myers said...

Feeds? We don't want to talk about no stinkin' feeds. Carter hasn't made any progress this week with feeds and has probably actually regressed a little. We're pretty frustrated. The speech therapist thinks that he is making a negative association with having liquids in his mouth, so we're working on getting him to a happy place when taking the bottle. His withdrawals are pretty rough now that we're getting near the end of the methadone and phenobarbitol (thank GOD). He's throwing up alot, so that's holding up his feeds. We also started Zantac for reflux, so we're feeling your pain on that one. I don't think Carter has forgiven you guys yet. Whenever he looks over at that bedspace, he starts crying. He misses his Riley.

Anonymous said...

All in all, things sound like they are continuing to go well for you guys. Glad to hear Travis is back to normal, and hope Mema is feeling better also. Riley still has those beautiful "want to pinch" cheeks, and he really does look like he is growing. Hope the ultrasound shows exactly what his problem is with the bottle feeds, and it can be corrected the best way possible. Enjoy the beautiful weather. It is believe it or not 63 here today, but very windy. Crazy Jersey weather!
Love and Hugs to all, Dale

Anonymous said...

Look at those cheeks!!! He is such a cutie! He doesn't look as yellow as he once did. Can't wait to see you all next week.

Anonymous said...

My how Riley seems so alert! Glad you got to take him outside. My prayers continue everyday for all of you. So today: Almighty God our heavenly Father, graciously comfort Riley in his suffereing and bless the means made use of for his cure. Fill the hearts of his family with confidence that, though at time they may be afraid, they yet may put their trust in you; through Jesus Christ our Lord. Amen.

Anonymous said...

Lindsey and Jay, Riley is just so precious. It was so good to see him. I can tell he is enjoying those stroller rides. I am sure the fresh air does him good. Take care all of you, Love, Debbie and Gary

Cindy said...

Awesome smiles on the whole family, good to see!

Brad, Kellie, Lucy and Baby Carter said...

Yay! Getting some fresh coastal air. We are very jealous! :) By the way, is that a Peg Perego stroller? We have the same one, but ours is black with white dots. Sorry to hear that they stopped the feeds, but I'm sure he'll be back on track soon.


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