Doing Better

The picture above was taken on Friday, before the retching event that set the little guy back a few steps. Fortunately, the past two days have been uneventful. He doesn't appear to be in pain, and he is starting to eat real food again. The most important part is the pacing - he can have a quarter cup of Fruit Loops, but he cannot have a quarter cup of Fruit Loops, yogurt, and strawberries. Monitoring the quantity of food is important - he gets gaggy the second he ingests one bite too many (and there really isn't a slow lead-up to how much is too much: one instant, he is fine, and the next, he's gaggy).

Nolan's g-tube site is leaking a little, but I've been told that is usually normal for a new site. I'm still keeping a sharp eye on it, and will call his surgeon again today. They never called me back from my voice mail left over the weekend when he was so ill, so I'm a tad irritated. I'd be more frustrated if Nolan wasn't doing better, of course - at least he is keeping fluids down and able to eat in small increments.

With the pain and retching, we stopped C-Pap therapy temporarily. His stridor is still there, and was fairly loud on Sunday night. There was a hope that this surgery would stop the stridor (it usually works pretty quickly in kids who have had success with that scenario), but it looks like the floppy airway is still floppy, despite the lack of reflux. I was prepared for this, too, since our sleep neurologist, surgeon, and the geneticist in Cleveland all warned us that the fundoplication would not be likely to stop the apnea. I'm OK with it - we have the C-Pap for the apnea and at least the fundoplication will stop the horrid reflux from causing continual infections and cellular changes in his esophagus. I hooked the C-Pap up again last night, and Nolan made it to his usual middle-of-the-night mark before waking and crying.

We have a follow-up appointment with the pediatric surgeon on the 26th, and they'll weigh him and we'll decide whether or not he needs supplemental nutrition during the recovery phase. In the meantime, he's watching a lot of cartoons and I'm trying to keep him from getting too rambunctious - a hard feat with a four year old child.

We are heading down to Myrtle Beach on vacation for Spring Break, and my mom is coming to visit the week before our trip. The kids are SO excited and I can't wait to see my mom. We're going to have a great time, especially if the weather holds up (honestly, it is going to be 83 degrees here tomorrow - unheard of for mid-March in Western NY)! My brother and sister-in-law generously donated their timeshare points for the Myrtle Beach condo, so we will have a nice place to stay that has a kitchen. Before Nolan's surgery, I didn't realize how vital that would become - having a place to store medications and clean out his C-Pap, g-tube supplies, etc. is absolutely necessary. Having a condo also means that we can easily hang out in the condo if the little guy doesn't feel well, and make his meals according to his needs (he eats little bits of food on a nearly constant basis).

I'm so glad we are on the "other side" of the surgery and heading toward a full recovery!

Tough Weekend

Nolan did VERY well after we came home from Golisano Children's Hospital. The first two days, he ate decently. On Friday evening, he ate a Go-Gurt, a tub of yogurt, a whole banana, and four small slices of pineapple.

And then he started retching.

Retching, for the uninitiated, is something that can happen to children with fundoplications. Their body tries to vomit up the food, but it can't get through the wrap. Nolan retched and retched, and then would beg for food because he was hungry. We tried giving him a taste of ice cream, and that set off the retching again. A sip of grape juice later on that evening did the same thing.

We finally put him to bed, concerned about fluids because anything touching his stomach would cause a retching episode. He actually managed to vomit up some ice cream past the Nissen wrap.

On Saturday morning, he seemed well. He didn't eat much (just a Go-Gurt), but was otherwise fine. We decided to back off solid food and focus more on the soft/pureed foods for a while. This worked well for him in the morning, and we made the decision to try a trip to the zoo that afternoon.

On the way down to the zoo, he started experiencing pain. He couldn't stand up straight when we got to the zoo. The zoo, by the way, was unbelievably crowded due to the good weather. The line in the gift shop to rent a wagon was ridiculously long and slow, so we tried to carry Nolan throughout the zoo. This didn't really work, however, so we ended up returning to the gift shop and renting a zoo wagon. He did better after renting the wagon, but was still in pain. He claimed his button and his sides hurt. There was a stop to Target on the way home to get some children's ibuprofen.

He ate 2 tablespoons of macaroni and cheese, 3 go-gurts, and a few bites of chocolate pudding yesterday. Poor little guy - he just wasn't feeling so hot.

He's doing a little better today, but had quite a bit of oozing out of his g-tube site. This is part of the healing process, but I'm keeping a close eye on it. He's eating a little better this morning - he had a go-gurt for breakfast, a go-gurt for lunch with about 1/4 cup of fruit loops in milk. He claimed he was still hungry, but we made him wait 1/2 hour for any more food to head off any retching problems. Sure enough, I gave him ice cream about 20 minutes later and he only ate 2 bites before he was "full." Pacing his food intake is tough when we know he isn't getting enough calories, but the alternative is to have retching and pain.

He took some more motrin and tylenol this morning, so we're keeping on top of his tummy pain. He's staying low-key today by playing the wii and watching movies. Hopefully he'll feel a bit better over the next few days!