Ups and Downs

Friday afternoon, Randy and the kids got here. No room at Rossi, so they are in a hotel and it just makes things harder, but we’re working with it. We took him down to the cafeteria, IV pole and all, for dinner. It’s so nice being able to be with him even when we’re not in the room. (Especially on peds because the nurses have so many more kids to look after that a crying baby just doesn’t warrant much attention unless there’s something medical going on.)

Saturday went pretty good during the day. He continues to vomit whatever he takes by mouth, but is tolerating the tube feedings OK. He was up to 10 cc per hour, which is almost exactly the total quantity of food he usually eats on an average day. (note, this is far below what he SHOULD eat, though.) By the end of the day, he was keeping down some oral feeds, but I think he only ate by mouth about three times total all day. The last time or two, be still puked, but he didn’t empty his stomach puking.

They have his G-tube venting, which means that it’s attached to a yard-long tube that ends in a giant open syringe. Gas from his stomach can bubble out, and his tube feeds can drip in with gravity, or if there’s too much, the food will push back out the tube and sit there, waiting for there to be more room. This makes carrying him around somewhat of a challenge, since we’re tethered to the IV pole with only 3 feet to spare, and not much movement up or down. (So if I’m holding him and I drop something, i can’t pick it up.)

Then Saturday night, he developed a fever of about 100. We are keeping an eye on it, but that’s AFTER the Tylenol that he gets every 4 hours. (He was down to every 6, and then every 8, but his level of pain seemed to increase greatly last night, so I asked if we could go back to every 4.) He is very uncomfortable, doesn’t want to be laid down, and cries this horrible I’m In Pain cry. I’m not entirely sure what’s going on, but it’s not good, at least from his perspective. If this next round of Tylenol doesn’t do the trick, we might ask for a shot of morphine, but we also clearly need to find out what’s causing this sudden increase in pain.

We’re also getting ready for our Big Move up to the NICU. Apparently, some of the NICU nurses knew we were coming back, and last they had heard, we were coming Saturday morning (which was the original plan). When we didn’t show up, they started asking the dialysis nurses where we were. That’s kind of fun. I hope we get some of our same favorite nurses…


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