Time for bottles

First of all....NO vomiting for Travis today. And he's been a good boy and has been drinking like we ask him to and has eating a little bit off and on and done ok. Fingers crossed that whole ordeal has passed. My mom seems to have caught what Travis had though and has spent the entire day in bed, except when she's up vomiting. Poor poor Mema. Feel better soon we say!

Riley's doctor today was Dr. Sharaf. His plan of the day was increase the tube feeds (up to 15.6ml an hour). Remember the tube is delivering a steady stream of milk into Riley's duodenum right now, bypassing his stomach, via that tube in his cute little nose. He also added 10ml bottle feeds to the plan, every 8 hours. He is passionate about immediatly begin working on Riley's oral motor skills. This is one of those skills where if you don't use it, you lose it. He has ordered Speech and Occupational therapy for Riley, to work on not only his oral skills, but positioning and what not for his reflux as well. He has just been a rock star with his tube feeds, no vomiting or indications of intolerance at all. Some gas, and I was lectured to lay off the hot sauce and spicy food for a while to help him out with that issue, but other than that, all has been going well.

his first bottle feed today, he took 5 of the 10ml. His second feed, he took 3ml. He vomited after both. Sigh. Not going to catch a break and breeze through this it seems. He has an all up-hill battle, remember? I added a little list over to the right side, so that you can keep up with his feed amounts. I totally stole the idea from the Myers :o) Oh they also ordered Play therapy as well, as in his words "he's a big guy and needs entertainment". He has been quite popular since his return. None of the therapists will come around until Monday.

The other item of interest is his Broviac catheter. Meaning what to do with that thing once he no longer needs it for TPN and lipids (his IV nutrition). We are actually getting fairly close to that happening, which seems so sudden to me. By early next week, Riley will be on FULL FEEDS via his D-tube. Once he's on full feeds and maintains that for a day or two, technically that broviac is no longer needed.
So the choice is....do we keep it for use in his next surgery, which if all goes well won't be for several months (if EVER i keep joking). Or, do we have it removed, and then the doctors use regular IV's, or even PICC line if needed when he returns for next surgery. Pros and cons for both. If we keep it, he will come home with the Broviac and we will have to care for it. That means flushing it with a heparin solution, just like you would an IV, at a set interval. And having to change the dressing around it at a set interval, in a somewhat sterile fashion. None of this scares me, i can handle all that. What DOES scare me is as wonderful as that Broviac is, it is an infection risk every day that he has it. Whether he is home or in the hospital. and remember that prior "antibiotic free" record? Well, we have broken it, as he is now 7 days with NO antibiotics. his previous record was 5 days. And I intend for him to have many many more infection free days. So our doctors here are going to have a conversation sometime soon with the doctors/surgeons up at DUKE and come up with their recommendation that then will be shared with us and the decision will be made.

Finally, although we have felt this way forever, hearing a doctor say "it is an absolute miracle Riley has survived all this", was just sobering. It's one thing as a parent to feel like miracles have happened, but when you hear someone who knows what is normal and not normal and expected and not expected tell you basically that he shouldn't have made it.....UNREAL. Just absolutely unreal.

Since so many want to know....Our Christmas was "ok". Riley's gifts are stacked in his room, still wrapped, waiting on him to come home and open them. Santa Claus came to both Travis and Riley's rooms at the hospital, and both of their nurses seemed to think that was the best and yet most unusual thing ever that Santa did that. My guess is Santa was pretty tired after delivering THOSE gifts as its a long way from where he could land his sleigh to their rooms, not to mention he had to wash his hands before entering Riley's room. ;o) Travis said it was the best Christmas ever. I tend to be on the opposite end of that spectrum, but I am thankful that both boys were in the same town on Christmas morning.