Wordless Wednesday: My {Super} Hero

Cute Overload

It was nearly 80 degrees earlier this week - almost impossible to believe now that the mercury has dipped below freezing again. We rejoiced in the warm air, wearing shorts and washing the car. Nolan looked at me and asked,

"Why are you wearing sand flappers?"

It took me a minute to realize he was trying to say "flip flops." I think I prefer the term sand flappers!

On a related (cute, four-year-old-speech) note, he told me he wanted to watch a movie today. I asked him which movie he wanted to watch, and he told me,

"Face the Madness! I want to watch Face the Madness!"

This one took a little longer to decipher. The movie involved robots. And guys. And "light savers."

Aha!

The Phantom Menace.

I think I like Nolan's title better, though. Off to watch Face the Madness!

Post-Op Appointment

Nolan is absolutely fabulous. He has no signs of reflux, and other than that one awful retching event, he's been great over the past week. He had a post-operative appointment today, and other than having lost a small amount of weight, he looks perfect. The tiny incisions have mostly healed, his g-tube site looks beautiful, and he  is otherwise glowing.

Literally, he is glowing. His face has gained a color that we haven't seen in a long, long time. His cheeks are quite rosy.

And yes, his glasses are missing in these pictures. In one picture it was raining (hence the lack of hearing aids and glasses) and in the other, his ears were a little sore so we forewent the glasses for a day.

His current stats (with accurate, shoes-off measuring) are:

Weight: 33 pounds
Height: 40.5" tall

We are having to vent him more frequently than in the beginning. This is actually a good sign, though, as it means the wrap is firmly in place. I usually have to vent him once each evening, though today I had to vent him three times! He was full of hot air today (both literally and figuratively)!

We will return to the surgeon in 4 months for another check-up and tube change (the balloons on the mic-key buttons tend to wear out with time, so we'll be given a new button at the next appointment).

I'd really like to start weaning him from the anti-reflux medications, but that process will have to be taken carefully. Even with a fundoplication, some kids still require medication (though in lower doses). These medications have to be weaned because the stomach goes on a crazy acid-producing stint if they are pulled suddenly. I'll discuss the medication wean with his ENT at his next appointment, which will be in the summertime.

We have NO doctor appointments in April. None.

Please excuse me while I go and do the happy dance!

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!

Bloated

Nolan has been doing wonderfully. Really, I wouldn't have guessed that the child would be out riding his bike a week after surgery - it is incredible.

Still, we have had some hiccups in the road (literally). Last night, he was very uncomfortable and told me, "They came back in my belly!"

What came back in your belly, Nolan?

"The reflux! I don't feel good. I need my Zantac!"

He also had those gaggy coughs that accompany reflux. Time to hit the Mommy panic button! His belly was fairly bloated, so I figured he was filled with food and maybe the pressure was forcing things through the wrap, causing reflux despite the Nissen.

This morning he seemed fine, and ate at a slower pace than yesterday. At dinner, however, he was very bloated and extremely uncomfortable. I figured I would try venting him for the first time.

I laid him down on the couch, attached the extension set and syringe, and...

WHOOSH!


It was literally like letting the air out of a balloon, sound effects and all.

After I vented him, he felt much better. He's still slightly bloated, but is not nearly as uncomfortable.

Tummy still slightly bloated after venting (it is normally flat)

I am so, SO glad we had the Mic-Key placed at the same time as the fundoplication. We can keep him from feeling miserable by simply "popping" the valve for some pressure relief!

Wow. Just... Wow.

We left the hospital on March 12, and went to the Ronald McDonald House in Rochester to clean up our room and check out. We tried to feed Nolan lunch, but he wasn't interested in food.

His lack of eating nearly earned him an extra day in the hospital, since the doctor wanted to do a calorie count, but we told  him we'd keep tabs on it at home. If he wouldn't eat, we'd have to start supplementing him with nighttime feeds of Pediasure.

He wasn't eating well this morning, either. We took him outside for a walk, and he finally admitted that his tummy hurt. I gave him some Motrin, and voila! He started to eat again! He's not eating normal quantities yet, but he is eating much better than he was. He ate 1 1/2 slices of toast and half a tub of yogurt for lunch. This is definitely a relief! He is not a child who will complain about pain, so the lack of eating in the hospital was due to the fact that the nurses discontinued his Tylenol - he "wasn't in any pain, so he didn't need it." Many kids display pain by withdrawing from activities, though, and they should have recognized his food refusal and inactivity as a sign of pain. The medication is working well at the moment, so we're alternating Tylenol and Motrin to keep him eating.

In the hospital, he only wanted his medication via the g-tube. The PICU nurse was really difficult about this, but our surgeon told us that we should give the meds via tube - once the tube is out, he won't need the medications anymore, anyway. As it turns out, the minute we got home, he wanted the medications by mouth. He simply didn't like the new and different medications (Prilosec instead of Nexium) given by the hospital staff.

He isn't bloating with the use of the C-Pap (air can get pushed down and not be able to come back up because of the fundoplication wrap). We haven't had to vent him for air - he was a little bloated from food (his belly gets round and tight), but we're leery of venting him for food because if you vent off those stomach contents, he loses a lot of calories. Essentially, venting stomach contents is the same as vomiting - we don't want him to lose those calories. We watch and wait, and so far the bloating always goes down within a couple of hours. We're watching that situation, but he seems to be doing decently so far.

The worst part of the fundoplication so far has been food getting "stuck." This happened a few times in the hospital, usually with macaroni and cheese or small bites of pancake. Nolan's surgeon told us that it feels like having a heart attack. When food gets stuck, Nolan is in agony, drool pours out of his mouth, and he turns sheet white. We try to give juice to clear the stuck food, which is why he's only allowed to have "dissolvable" foods right now. Toast, yogurt, pancakes, and food of that nature is safe for him. He cannot have things like meat or untoasted bread quite yet. We're close to trying some other foods, because he only had one very minor "stuck" incident today - as the swelling from the surgery goes down, this should become less and less of a problem.

He is playing and having a great time being home. His voice is clear - the raspy voice quality has disappeared. This is a great sign that the reflux is gone.

His hospital stay was only 5 days - very short for a Nissen Fundoplication patient. He is doing amazingly well, as long as we keep giving him Motrin and Tylenol.

Dearest Reflux, how I have hated you. Good riddance!