Tuesday, March 27, 2012

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."


The Phantom Menace.

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

Monday, March 26, 2012

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!

Tuesday, March 20, 2012

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!

Sunday, March 18, 2012

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!

Thursday, March 15, 2012


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...


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!

Tuesday, March 13, 2012

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!

Sunday, March 11, 2012

Going Home Tomorrow

Nolan is feeling great today. He is eating, albeit in tiny amounts. He has almost no pain. Tomorrow, they'll remove his final stitches (tying down his mic-key button) and we will go home.

I am pretty sure this surgery has been a resounding success. Nolan's voice seems slightly higher in oitch, but really, he just isn't hoarse anymore.

This may be the best thing we ever did for him!

Saturday, March 10, 2012

Getting Clean

We cleaned around Nolan's tube today, which really improved the look of his belly. He also got a shower. He resisted getting in the water at first, but once we git him in, he didn't want to get out!


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!

Friday, March 9, 2012

On the Regular Ward


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.

Thursday, March 8, 2012

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.

Wednesday, March 7, 2012

Tough Stuff

Nolan has had a rough afternoon. At first, the fentanyl from surgery kept the pain at bay.

He was very upset. He can't have anything to eat or drink. Nothing. No ice chips, no water, no wet rag. Anything that hits his stomach could cause retching in a very sensitive tummy. For kids with fundoplications, it isn't unusual o go 48 hours without water.

His tummy looks pretty decent for the surgery he went through. He is in a considerable amount of pain. He got more IV morphine about a half hour ago, but he still can't sleep.

Surgery Done

They were able to do the fundoplication laprascopically. Moving to the PICU.

Taken to the OR

They took Nolan back to the operating room at about 9:30am. He went off without any tears - such a brave boy!

Tuesday, March 6, 2012

At the RMH in Rochester

I'm typing this on a tablet, so forgive any formatting errors! 

We made it up to Rochester pretty quickly. I am so grateful for the Ronald McDonald House. Now we're trying to settle Nolan down. Hopefully he'll go to sleep soon!

Surgery Time

I just called the hospital and Nolan's surgery is scheduled for 9:15am tomorrow morning - we'll check into the hospital at 7:45am.

Getting Ready to Go

Saturday Night: Too Much Excitement

We had a crazy weekend. I went to a training session for parent members of the special education committee (a volunteer position) and then came home just in time to run off to the ice arena. Matthew played his final hockey game of the Timbit season, had an award ceremony, then we went out for pizza. As it turns out, this was the second meal of pizza he had had that day (hint: foreshadowing).

We returned to the rink for the Ironman game, and the boys were having a lot of fun in the arena with noisemakers, shouting, yelling, and lots of other excitement. They also had more junk food and slushies. We didn't get home until 9:45pm, which is wayyyy after my boys' typical bedtime.

At 4:15am, Matt tapped me on the shoulder and declared, "Something happened in my bed."

Oh, for the love of vomit.

He tossed his cookies a few more times that night, and I had a panic attack about Nolan's surgery. If Nolan got the stomach flu during a fundoplication recovery, things would be bad. Very, very bad.

By morning, Matt seemed fine and he was eating food like normal. No fever, no other sign of illness. I started to relax and chalk up the middle of the night upchuck marathon to over-excitement and junk food. Of course, I spent the weekend in a state of terror, monitoring Nolan for signs of anything tummy-related.

A few days later, everyone is fine. We headed up to the ENT yesterday for a routine appointment. It went well,  and we determined that Nolan's "wet cough" did not really involve his lungs. If he had any problems with his lungs, the surgery would be off. Fortunately, all is well and it is just in his throat. He did have to have wax cleaned out again, which meant the papoose board and a lot of upset from Nolan.

After the ENT, we picked up Grandma from the airport and headed home. Today is the day before surgery, and everyone is right as rain. Matt went to school, Nolan seems happy and fine, and I have to call the surgeon to see what time surgery is tomorrow (and then call the Ronald McDonald House to check in).

I'll try to give brief updates from the hospital when we're there.

Friday, March 2, 2012

Hanging Out at Home

Wednesday was Nolan's last day of school. Yesterday he had a speech therapy session at home and a visit from his Teacher of the Deaf, but otherwise he hung out in his pajamas and watched cartoons. He has also been helping me bake a few things, which he loves.

My attempt at keeping him entirely well before surgery has failed - he woke up yesterday with a nasty wet cough. Fortunately he seems well in every other way - hard to tell if he has a virus or he just aspirated reflux, causing a small lung infection. He does that occasionally, and he's been particularly refluxy lately. Lots of hiccups, coughs, and choking when he drinks.

If the weather holds this morning, I am going to take him outside for some fresh air, because I think it would do him some good. We don't have many plans for today, which is a relief. The weekend is going to be very, very busy - Matthew has a piano lesson and his final hockey game of the season tomorrow, followed by an award ceremony. He loves hockey, he really does, but I have to say I am glad for the end of the hockey season with everything else going on this month!

Matt is the skater out in front.

Nolan has an ENT appointment on Monday - I would have canceled it, but we are going up to the airport to pick up Dennis's mom, anyway. Besides, if we go to the ENT now, we won't have to return for three more months - which means I won't have to drive Nolan to Buffalo among the many trips to Rochester for GI follow ups.

We have started talking about going to Rochester and staying at the hospital with Nolan. He still doesn't know any specifics, but he is quite aware that something is going on with Grandma coming and his staying home from school. I simply told him that we are going to the hospital and the doctor will fix his reflux. He's not very happy about going to the hospital - he has a lot of experience with hospitals since this will be his eleventh procedure/surgery under general anesthesia. We're not telling him about the g-tube until closer to the actual event, since it would only upset him and the surgery is still 5 days away.