Saturday

We're hanging in there on the fourth floor of Strong Memorial Hospital (Golisano Children's). Nolan was moved to the regular ward yesterday. The freedom is greater, but there are fewer resources available - Nolan has a shared room with a shared bathroom, and didn't have a table for quite some time. This meant he had to eat his meals on his bed, which was sort of messy. It also meant there was nowhere to really put his C-Pap at night.

Nolan is able to eat yogurt and applesauce, but is having difficulty with macaroni and cheese and scrambled eggs. He can only eat one macaroni noodle at a time, or food gets stuck. When food gets stuck above the wrap, it is extremely painful (our surgeon likened the pain to having a heart attack) and he salivates, chokes, and turns white. Not fun at all. We're sticking to the yogurt and applesauce for now.

I had a panic attack when he burped a few times yesterday, then brought up a little reflux. I was terrified the Nissen wrap wasn't functional, but it appears that the brief episode was a fluke. He is actually rather bloated today, so he definitely has a tight enough wrap. We'll vent him through his g-tube in an hour or so.

I was trained on his g-tube last night. We took off the dressings and the nurse showed me how to clean it. Nolan was in considerable pain and refused to walk, eat or drink. He also refused tylenol, spitting it out all over the room. We gave his tylenol through the mic-key, and what a lifesaver! So easy, and the pain relief kicked in fairly quickly.  He's getting all of his meds via tube now, and food via mouth. He's not eating very much, though - hopefully he'll eat more as the week goes on.

The new nurse came in this morning and told me he would be discharged today. This was rather shocking since Dr. Lee told me he would be in to see the little guy on Monday, and our nurse yesterday indicated that we would be staying the night again. Nolan also still has stitches in place on his tube that have to be removed, we don't have any supplies, and we don't have any follow-up appointments. We're also supposed to try the C-Pap in various states of venting - we have done suction and gravity (both were successful) and Dr. Lee also wants us to do a trial of C-Pap without venting.

Fortunately, the surgical attending and residents came through on rounds and I expressed my concern about the stitches. The attending looked at me with concern and said, "He's not going home earlier than Monday. It's not safe to discharge on the weekend, and there are a few things to get sorted first." This was actually a relief. While it would be easier to care for Nolan at home in some ways, we're not quite there yet. I'm sure we will be by Monday, though! Hopefully we'll be on our way home after this weekend.

After rounds I gave Nolan a shower. He can't have a tub bath for two weeks, but he can have showers. I washed the orange betadine stains off his tummy and cleaned off the grime from several days' worth of hospital stay.

We're trying to keep him entertained and active (walking is good for him). His lungs are "wet" and he has a nasty cough - the 'post-surgical' cough, as our nurse yesterday called it. They're having him blow bubbles and blow on his pinwheel to move air through his lungs. We don't want him to get pneumonia on top of everything else!