I tried to keep up to date via twitter yesterday, but I didn't really update the blog so I'll try to now while Riley is just lying in his crib peeking around the room.
He is still on the PICU step-down unit. The surgery team have ordered more labs for him this morning (yesterday his potassium was low). If those come back ok, then he'll be moved off the step down unit and into a regular room. The room he is in right now is exactly the same as a regular room, its just a closer level of monitoring (so they say). So as far as location/amenties, whatever you want to call it, nothing about that will change. It's just a positive step forward. He continues to run a very low grade fever, but they aren't super concerned about that still, as he is still not that far out from surgery. It is being monitored closely, and he is so sick of seeing us or them get that thermometer out (he hates the restraining of his arm while we wait for it to take his temp).
His little head, that became misshapen his first night here from lying in one position too long plus all the fluids he had pumped into him, has gotten much better. It actually has a bruised spot on it, but it has rounded back out quite a bit. Still not all the way, but it is considerably better.
I got to hold him last night. He didn't seem to care much for the moving, but once we were in the rocking chair, he was content.
His Cook catheter ended up NOT being clogged yesterday. There are two little tubes or LUMENS as they are officially called. They had his IV fluids running through one, and had added another IV fluid to it, and then added a potassium to it also. It was just too much pressure for one single lumen. So they divided his fluids and meds amongst the two lumens and they are working fine. That was a very good thing.
He continues to be much more alert, and lifts his legs in the air and wriggles around some. He has played with the two little bears in his crib some, and has asked for his mommy LOTS. Sometimes he just lays there, with his finger in his paci, and looks around the room, or like right now, he's facing the door/window to the hallway so he can see all the people bustling by. It is obvious that his belly is very tender, but he amazes me with his movement. After his previous abdominal surgeries, he has always kept his legs drawn up to his belly, until he felt less pain. He was kicking his legs all about the first night this time.
Mr normally happy and social hasn't let any of his caregivers see that side of him YET. In fact, he starts protesting soon as they walk in the room for the most part. It about broke the heart of his nurse last night. She so badly wanted to interact with him and he wanted nothing to do with her.
They have continued to hear bowel sounds on every exam, and early this morning, I could hear the gas rumbling about in his belly. Shortly after...I could SMELL the gas rumbling about in his belly. Passing gas is a very beautiful thing for Riley after all he's been through. That means the air he's sucking in when he's crying etc, is making it all the way out! We continue to be on the lookout for poop...although he's still NPO (nothing by mouth), and just receiving IV fluid, I'm not real sure WHAT there is in there to come out. But then again, back before his second surgery, he didn't eat by mouth, his ostomy bag always had something in it, so I guess there should be something in there to come out.
A question I have gotten from more than one person is "does he still have an ostomy or does he still have a bag". NOPE!!! His small intestine, which previously poked outside his belly, was reconnected to the free end of the large intestine he has left, so now he's connected from mouth to butt, and stool will pass out of him the same way it does normal babies. He will have a dirty diaper sometimes soon, for the first time since he was about 2 weeks old.
This also means, in the words of his surgeon, he will get "the diaper rash from hell", because his little bottom isn't used to having stool on its skin. And he won't be starting out with the less acidic stool of a newborn, but the much more potent stool of an 11 month old. His bottom's gonna take a beating, but we have inquired as to what we can do to hopefully lessen that, or at least take a proactive stand against it. We're going for the "ounce of prevention is worth a pound of cure" route and protecting his tushy NOW before the stool begins in hopes of it lessening the damage.
The room he is in, has a little pull out bed/chair thing, and that is where I have bene spending my nights. Jay has gone to the Ronald McDonald House to sleep at night. I've taken some pictures with my real camera (versus the ones posted so far from cell phones), but I'm trying to not get out too much stuff in this room, so I haven't got my card reader up here with me yet to be able to post those pictures. Sounds like Riley should move to his permanent room today though, then we will get all my stuff in there, and I'll post pictures then.
Well, I think that is all for now!