Today we arrived to Riley's room, to find him in his crib and fussy. Little Riley doesn't like being alone when he's awake. Who can blame him? 3 month olds like some entertainment. He's popular though and nurses from all over gladly come in to give him some company when we are not around. I of course scoop him up out of his crib and sit down with him. about 5 minutes later, a nurse, filling in for his nurse (and who we really like) came in to do her assessment, which always includes listening for bowel sounds....so unsnap the sleeper and UGH...his ostomy bag had leaked....ALL.OVER.HIS.BROVIAC. And when I say that, I don't mean the tube part. But then END of it. Where the IV line connects, and bacteria can enter. Insert lots of action here. I put him in the crib. Jay grabs alcohol wipes. The nurse goes to get new tubing, hub, clave, to replace EVERYTHING that connects to his broviac. So clamp it off, and remove the old, clean the end of it very very VERY well, and replace with new. UGH. Needless to say, we nicely asked that his broviac NOT be in his clothes or dangling over his ostomy site, to his regular nurse. Certainly don't want an infection at this point.
He tolerated his continous tube feeds like a champ. Dr. Logan is just as pleased as he can be with how he's doing and is shocked all at the same time. He too, has told us, that after hearing what transpired at Duke this past trip, that he was afraid Riley wasn't ever going to make it home. Tomorrow we transition to more of a bolus type feed with him. he will get a continous feed for 3 hours and then have an hour break. Then the cycle will be repeated. Another great step towards coming home. Which he actually gave us a guesstimate (and not at our asking) of how long he thinks that will be.
Riley's bottle feeding orders right now say "do not wake him to feed". So he pretty much always misses his 2am feed because he sleeps through the night. Today he slept through 2am and 6am. 10am the speech therapist was there and he did TERRIBLE. That was pretty much her words. He was gagging and he vomited and it just went very poorly. I brought in a DR. Brown's bottle to try with him today, as he didn't do great with his feeds yesterday either. The nipples they have there are latex and his paci is silicone so I thought perhaps it's a texture issue. So we started with that at 2pm. He did fairly well with that, but still very frantic at times. At 6pm,I had the thought to squirt some tootsweet in his mouth, then pop that bottle in (still the Dr Brown's) and sluuuuurp went 15cc!! 10 pm tonight, the same trick and the same result. Hmmm....I'm hoping we are on to something. We'll see what happens. I am in a big hurry for him to take more by bottle, not only because that is close to coming home but because there is a LOT of my milk being wasted in his pump system and that makes me ANGRY. The smart ones take the amount of milk he gets per hour x 4 hours and pour ONLY that amount in. The not so smart ones...(which are obviously people who have NEVER had to pump milk) just pour random amounts in and after 4 hours (when they HAVE to get rid of the rest) pour the excess down the drain. A few cc's is one thing but you should have to pour any away. If I have to make a note myself to put on that pump I will but I will NOT have 4 OUNCES of milk wasted at one time again. Period.
Peek a boo big brother style
Hey Travis..what you doing over there?
All eyes on his brother