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!

On the Regular Ward

Friday

Nolan  is doing OK today - he had a rough morning because we tried to make him walk, which was a no-go. He kept collapsing his legs and crying. Then we gave him medication (not his "usual" Nexium) and he screamed and cried, so we had to force it in his mouth. I asked about using the tube for the meds (and the medication only), but the nurse was adamant that the tube was for "venting only." So he screamed and we held him down - not a happy morning.

He got a little tylenol this afternoon (he hadn't had any since yesterday afternoon, so no pain medication for 24 hours). We tried walking again and he did a little better. His surgeon came by and I asked about "lunch," and he cleared him to have "mushy" food. We did tell Nolan that he had to walk to get his lunch, though - his lungs are sounding gunky and we don't want him to get pneumonia from sitting around in bed all day. He walked, and we just ordered macaroni and cheese (waiting for it to come from the cafeteria).

Dr. L. also told us that we could (and should) use the tube for medications. After all, why not use the only benefit the kid gets out of the tube? If he gets a 2-3 month break from taking nasty meds by mouth, go for it. I was so relieved, because he hates taking his medications (particularly Zantac). As the logic goes, by the time he no longer needs the tube, he'll no longer need the medication, anyway. I'm not sure what the nurse's point was about making him take meds by mouth was - he's eating by mouth, which is the far more important thing. I'm glad the surgeon was clear on this - it will make things easier for Nolan tonight when we have to repeat the nasty meds.

Hooked Up

The little guy is hooked up and sleeping. We were told we might be moved after he was already hooked up and asleep, but I hope we don't have to wake him and move him. The air that might end up in his tummy from the c-pap is being vented out of his g-tube. Poor kid lost most of his orange popsicle, too.

Night #2

Nolan went for three push-car rides today, and played in the playroom. He still can't stand or walk (just too weak/woozy) but he is only on tylenol for pain relief now. He seems to be doing fine, and is very happy to have his clear liquids. He still wants regular food, though!

Tonight is the first night with C-Pap and the fundoplication. They will hook his stomach up to the wall suction to keep air from getting trapped. We'll see how he does - we're still in the PICU but will definitely be on the regular ward by tomorrow (we're only in the PICU because of the lack of available beds in the regular pediatric ward).

Doing Better

Oh, the relief of being able to have clear liquids! Nolan can have apple juice and popsicles now. We took him for a ride to the rec room, and he enjoyed that. We may stay in the PICU tonight because there is a lack of beds on the general ward.

Long Night

Nolan had a hard time getting to sleep lt night. He finally nodded off at ten o'clock. He got
another dose of morphine halfway through the night. He has been watching movies for thmost part - he loves the controller-volume-speaker device, because he can hold it right up to his hearing aids.

He woke at six this morning, and is watching Mars Needs Moms on the hospital TV. Word on the street is that we're moving out of the icu today and onto the general floor. He might even get to try a popsicle later today.