Sunday, July 29, 2012

Another Blasted Ear Infection

I have nearly completed another week's food diary. I took Nolan in to be weighed on Friday, and he was bouncing all over the scale. The scale clocked in at 34 pounds, which places him in the 7th percentile on the pediatrician's scale. He is below the 3rd percentile on the surgeon's scale. I'm not really confident about the weight at the pediatrician's office, though, because he was bouncing and they didn't re-check it to verify. And their scale runs consistently heavier than the other two scales (at our ENT and the surgeon's office). The whole food-and-weight issue is very stressful - I'll feel better once I have input from our surgeon and the nutrition department in Rochester.

On the other hand, our "give him any food he wants every hour" might be working to put on weight. It isn't nutritionally sound, but might keep him out of the failure-to-thrive category. I'm still waiting on word from our surgeon. The phone rang on Friday morning with a Rochester area code, but the answering machine had picked it up and the caller hung up when I answered. This was highly frustrating, as I think it might have been our surgeon trying to call.

In the meantime, Nolan has been enjoying his swimming lessons and has had a wonderful time showing off his fearlessness.

On Friday afternoon, he kept putting his finger in his right ear and complaining that it wasn't working. This meant one of two things: either that ear has finally gone kaput and dropped a significant amount of hearing...or he was in the throes of another infection.

On Saturday morning, we were running out of the house to a 9:00am soccer game, and I saw the drainage as I went to put his right hearing aid in. Beautiful. Ear infection number 2 since the fundoplication. At least there isn't a sinus infection with this one!

The pediatrician has Saturday hours, so I called and made an appointment for 10:00am. Our Saturday schedule went: soccer, pediatrician appointment, soccer. Nolan is on Amoxicillin and Ciprodex ear drops again. We can't tell if his tube is still in place, because there was too much pus to see his eardrum. Nolan hates the antibiotics, so we're putting the Amoxicillin through his g-tube.

We are leaving for California in a week, so I really hope the ear infection is gone before we fly!

Wednesday, July 25, 2012

Summer Fun

This week has been nice and quiet. Apart from keeping track of everything that Nolan eats, there haven't been any appointments to worry about. He ate quite a bit yesterday, including 1/2 a sandwich (with peanut butter!) for lunch and 1/3 of an Easy-Mac macaroni and cheese container. I'm not really worrying about overall nutrition at this point - just trying to get food into him.

Nolan started swimming lessons on Monday and is absolutely loving it. The boys are both taking lessons at our elementary school (yes, our elementary school has a pool). The teachers are awesome with him and completely "get" the hearing loss situation. No one has let him wander off into a different group and they always take him by the hand to lead him to the right location. He's starting to swim from the teacher to the side of the pool - I am excited (and relieved) that he's really learning to swim!

We built a "kid wash" sprinkler this week, which was a lot of fun. Nolan helped hold the pipes as we built it.

They spent much of the following day running through the sprinkler.

The kids are having a blast with summer - I really hope we have hot weather all the way through the end of August, so they can play in the water for as long as possible!

Monday, July 23, 2012

Food Diary

I kept a food diary for Nolan last week, as directed. We're doing it again this week to see what his total caloric intake is over time. I emailed it off to his surgeon late last night, so we'll see what he says: either Nolan is eating enough and his body is burning through it too fast, or he isn't consuming enough. It is hard for me to tell - he eats small amounts all day long, and rarely eats any "meal" - I wonder if his delayed emptying is still there (though that often disappears with the fundoplication, so who knows).

We had him weighed at the pediatrician on Friday and he weighed in at 33.8 pounds on their scale. This is a significant difference from the surgeon's scale - the 31 pounds on his scale places Nolan at a very low weight for his age. 33.8 pounds is at the 5% mark, though - much better than 31 pounds. I emailed this information to the surgeon as well, so we'll see what he thinks.

This is what he has eaten for the past week:

  • 1 ¾ waffles with butter and syrup
  • Cup apple juice
  • 2 bites macaroni and cheese
  • 2 packets cheese and crackers
  • Cup pineapple juice
  • ¼ cup Wheat Thins crackers
  • Water
  • 1 bite pizza (“too full”)
  • Half bread stick
  • Popsicle

  • ½ blueberry bagel
  • 1 cup orange juice
  • Nectarine
  • 2 bites jelly sandwich
  • Popsicle
  • ½ cup Cinnamon Toast Crunch Cereal with milk.
  • Few bites Italian Ice (Luigi’s)
  • Popsicle
  • ¾ Bowl instant oatmeal (dinosaur egg oatmeal)
  • Piece of bread with ketchup and mustard on it.
  • Water

  • ½ cup dry cinnamon toast cereal
  • ½ peach
  • 2 bites macaroni and cheese
  • Juice box (grape juice)
  • Water
  • ½ cup cornflakes with milk (and 1 teaspoon sugar).
  • ½ cup spaghetti with meat sauce
  • Few bites of a baguette slice
  • 1/3 cup green beans
  • Popsicle
  • Whole sandwich (cheese slice, ketchup, mustard)
  • 1 string cheese

  • 1 cup dry cinnamon toast crunch cereal
  • Few bites jelly sandwich
  • ½ carrot with ranch dressing as dip
  • ½ Freddo Frog chocolate (small chocolate treat from Australia)
  • Slice of Kraft cheese
  • Go-gurt
  • Slice of baguette
  • ½ cheese quesadilla
  • Tortilla chips (5 or 6)
  • ½ tub of yogurt

  • 6 “timbits” (donut holes)
  • 2 bites macaroni and cheese
  • Juice box (grape juice)
  • Few bites cheesy “twisties” (like Cheetos)
  • 1/8 cup ice cream (estimated – he licked some off the top of a cone)
  • 2 pieces of bread with mustard and ketchup

  • ½ cup Cinnamon Toast Crunch cereal (dry).
  • ¾ grilled cheese sandwich
  • 1 small carrot with ranch dressing
  • ½ cup orange punch
  • Small carrot with ranch dressing
  • 2 bites of corn
  • Popsicle
  • Gogurt

Wednesday, July 18, 2012

31 Pounds

We had Nolan's four month follow-up with the surgeon on Monday. This was a routine appointment to check on how he is doing four months post-fundoplication. The appointment is in Rochester, which is a long three hour drive from our house, but totally worth it for the expertise and brilliance of the surgeon.

I took the boys to the science museum in Rochester before the appointment, as six hours in the car for a 20 minute appointment is generally not a good idea with an almost-five year old and six year old. The kids loved the science museum, though it was a bit crowded with day camps and school tours.

We only had about 2 1/2 hours at the museum before we had to leave for our appointment. The hospital is only about 10 minutes from the museum, but finding parking and actually getting the boys to and from the car takes a bit longer. We made it to the appointment with five minutes to spare.

We waited for about 10 minutes and they called Nolan's name. They took his height, weight, and blood pressure. The nurse reported his height at 40 and 3/4", which was a tad disappointing. His height isn't really increasing - something we hoped would happen with the C-Pap for his apnea. His growth is obviously an area of concern for us, though he hasn't fallen off the charts so we're happy enough to watch and wait.

A medical school student came in to ask us about our concerns (we mentioned growth) and then asked if she could take his history. I chuckled and wondered if she had enough time for Nolan's history. I was only about halfway through when the surgeon walked in and also chuckled, saying, "Nolan is one of our interesting ones."

We chatted about his healing from the surgery and how he's been doing wonderfully in general. I mentioned our concern about his growth and how we were a bit worried since Nolan is one of the smallest on his soccer team (and is also the oldest). He's the average height of the three year olds and weighs less than any of them. The surgeon wanted to look at his height and weight status, and was not happy. Not happy at all. I hadn't seen his weight on the scale, but Nolan is down to 31 pounds. 31 pounds and nearly five years old - he was 34 pounds about 5 months ago.

31 pounds, 40.75" tall

He has fallen off the charts. I wanted to put my fist through the wall at this point - whatever we gain in one area, we seem to lose in another. His weight for height is even more abysmal.

For whatever reason, Nolan cannot take in enough calories to grow. No matter what, he needs more calories. The surgeon is going to collect some data to calculate the number of additional calories Nolan needs to grow - and then we're going to feed him at night through his G-Tube. Did I ever mention how glad I am that they placed that mic-key at the time of fundoplication? They don't always do that for kids in Nolan's age range, but I think it should be mandatory for any kiddo with a complicated history. If we didn't have that tube, he'd be going through a second surgery to have one placed. Fortunately, initiating nighttime feeds is extremely easy now because the hardware is already in place.

Part of the data collection includes a food diary, so that we can work on WHY the little guy isn't growing. The possibilities are:

  1. He isn't eating enough. He seems to be eating fairly well, but tiny bites all day long may not add up to enough calories. He also gets bloated and complains that he is full on a frequent basis, then is ravenously hungry 4-5 hours later. It is possible he still has delayed gastric emptying or another cause for feeling full too quickly.
  2. He is burning too many calories. With Nolan's laryngomalacia and apnea, breathing takes effort. Add in the summer months and swimming and soccer, and the lower muscle tone, and everything he does takes more work than a typical child. He might simply need more calories than he can possibly take in by mouth.
  3. He isn't absorbing what he eats. We know he has intermittent, severe diarrhea. In general, that area of his digestive tract doesn't appear to work perfectly well. He might not be absorbing food properly, even if he is eating enough and isn't burning too many calories.
Right now, I am writing down everything the child eats and drinks, and will email it to the surgeon. Nolan is also going in for weekly weight checks at his pediatrician's office, to monitor his growth. 

Over the next two weeks, the surgeon is going to look at what he is eating and his weights, and then he'll set up the nighttime feeds with the supplemental calories. We'll have to get a feeding pump and all the accessories that come along with that - and figure out what to do with a feeding clinic (we have to choose between Buffalo and Rochester - one is closer, one is better).

In the meantime, Nolan is having all the ice cream and milkshakes he wants!

Friday, July 13, 2012

July 2012 Audiogram

I got Nolan's report in the mail. Most of the frequencies were fairly stable, though he lost a considerable amount of hearing at 4,000 Hz in the right ear. His hearing at 8,000Hz also dropped by 10dB in that ear (I'm less concerned about that frequency because it isn't really in the main speech frequencies).

Here is his latest audiogram:

He can't hear anything above the red and black lines (without hearing aids). This basically means he cannot hear any speech sounds without aids (this is the same situation as his last audiogram - kids who hit the moderately severe level are usually completely below the coveted "speech banana").

His speech discrimination (closed-set, WIPI) dropped from 100% at 80dB to 80% at 80dB. I managed to get aided discrimination at 50dB with the same WIPI cards and he scored 96% using both ears in a soundfield (while wearing hearing aids).

His bone conduction scores are showing less of a gap than they used to show - a 15dB gap between his better-hearing ear and the bone conduction values. His loss is predominantly sensorineural, though there is obviously some small conductive component at play. The bone conduction at 250Hz is generally disregarded because it is vibrotactile - kids feel rather than hear bone-conduction tones at this frequency.

His hearing has been slowly progressive. I put all of his audiograms together and made a short video out of them, to show the progression over time. There is a significant change from birth, but the progression is very slow.

You can see the amount of lost hearing (summary) in the audiogram below. The blue line is from his first behavioral test at the age of 8 months, and the red/black lines are from his test last week. The lost sounds are highlighted in pink - he has a very slowly progressive hearing loss, but the sounds he has lost are significant (they include ch/sh, r, and k).

Monday, July 9, 2012

ENT Visit (Routine)

Waiting at the ENT

Nolan had an ENT visit today - just a routine follow-up. Normally a "routine" appointment would simply take a few minutes, but a lot has transpired in the past four months or so. We discussed the following:

The Nissen Fundoplication: everyone is in agreement that the surgery has been a success. "Success" does not mean that the reflux is entirely gone, but that the symptoms are mostly controlled. He has only had one ear infection and one sinus infection in four months - for Nolan, this is a major win

The G-Tube: due to continuing stridor and the use of C-Pap, the g-tube will remain in place for as long as Nolan has the need for mechanical ventilation at night.

The stridor: I showed our ENT a video of Nolan's stridor and she agreed that it is most likely due to the laryngomalacia. He's been through a lot lately, but she wants to do another scope in the fall or winter. She would like to try to cure the stridor surgically, but we aren't so sure about that route since past attempts have failed. 

Diarrhea: We aren't sure if the diarrhea is due to the fundoplication, the medication, or something else (read: intestinal issues or enteropathy). It comes and goes, and isn't as severe as it was a month or so ago. His ENT agreed to a trial wean from the Nexium (he must stay on the Zantac). This is rather convenient, as he has been off Nexium for about a week due to yet another insurance denial. If the diarrhea ceases, we'll know that is the cause. Since he's been off the Nexium for about a week, I doubt it is the medication (he had an episode last night). I also doubt it is due to the fundoplication, since it was present even before the surgery. We'll take it as it comes.

Weight: Despite some stellar days with eating, Nolan's weight hovers at 33 pounds. He's between the 5-10% for weight. The non-stellar days with eating keep him from gaining well. This is another watch-and-wait thing. He's still on the charts - little, but still on the charts. Yet another reason for the g-tube to stay put - if we remove it, we could very well be having one put in again in a few months as he falls off the charts (unless he starts to gain).

Falling episodes: It is hard to do formal vestibular testing on a young child, but the consensus is that Nolan's falls are vestibular in nature. There isn't much to do about this particular situation, since the attacks are random in nature.

Gross motor skills: Nolan is on "alert" with gross and fine motor skills through the school, since he has some muscle weakness. He can run just fine, but his throwing skills, jumping, and balance are not age-appropriate (as measured by the DIAL preschool scale). Not really the ENT's domain, but we discussed it. He'll probably end up with physical therapy or occupational therapy sometime during kindergarten. Another thing we'll take as it comes.

Fatigue: we aren't sure if this is due to stomach pain/dysfunction or if he has true fatigue. Watching and waiting on this one.

Progressive hearing loss: I brought up Nolan's new hearing level. This is one time I wish he did have fluid or a sinus infection to explain the additional loss. Sadly, this is simply a drop in his sensorineural hearing level. There is nothing to do for it but watch, wait, and increase amplification. I asked our ENT if most kids with progressive losses just level off at some point. She smiled and shook her head sadly, but then said, "Well, sometimes. We have no way to tell what is going to happen." Considering that Nolan started life with a normal hearing level and present OAE's in the high frequencies and now has a 70dB loss in that ear, things aren't looking promising. It could take a long time for his other ear to drop or for either ear to progress beyond the help of hearing aids, but we are probably going to see his hearing slowly slip away.

We'll return to the ENT on October 15 for another routine appointment. An endoscopy will probably be ordered to look at his esophagus and larynx at that time. We'll also be able to discuss his hearing loss, since I should have the audiograms from the July 6 test and the October 8 test by that time.

Dental Appointment

Both boys had a dental appointment this morning. Nolan is such a good sport about the dentist (he actually likes the dentist, which is beyond awesome). The free stickers and toothbrush might have something to do with it - he's a sucker for prizes.

His teeth look good, though the one with the sealant is a little dicey. It might need a full-on filling soon, but we're in a wait-and-watch mode. He'll go back in January for another cleaning.

Matt's teeth look great. He has gained two new adult teeth since the last visit (the bottom front teeth). He also has four loose teeth, so the Tooth Fairy needs to start saving now!

I love these easy appointments! Next up: a trip to Buffalo for today's ENT appointment. It's a busy "doctor" day, but it is better to get them all done at once (and enjoy the rest of the week sans appointments)!

Sunday, July 8, 2012

Visit to Seneca Lake and a Hearing Test

Dennis's parents visited this week and we took a trip to Seneca Lake (one of the Finger Lakes). It was so beautiful, and the boys really loved playing on the playgrounds, hiking through Watkin's Glen, and driving the pontoon boat. Nolan's most favorite activity was driving around the lake.

We loved our vacation, though once it ended the spate of July medical appointments began. Nolan had a hearing test on Friday, July 6. He had been stable for a year, so I was hopeful we'd see the same audiogram we saw in December. If he was still stable, then we would be able to go to once-per-year hearing tests.

Unfortunately, his right ear decided to drop down to 70dB at 4,000Hz. This explains where his /s/ detection went! I can't remember his actual new audiogram, so the picture below is just an estimation. I'll post the "real" audiogram once I get it in the mail. His right ear used to be the "better" ear, but is now the "worse" ear. The black line is what he was able to hear in December, the red line is his approximate new hearing level:

This is a 15dB drop at that particular frequency, which is where f, s, th, and the softer sounds of speech are found. This is typical for Nolan, and usually the other ear drops to match the worse ear in a matter of months. His unaided speech discrimination dropped from 96% to 80% in that same ear, at a 90dB volume. His left ear is currently unchanged.

This was a bit of a bummer, but his hearing aids have been reprogrammed to match his current level of loss. I did manage to convince his audiologist to do aided speech discrimination. The current recommendation is to do aided discrimination at 55dB and at 35dB, as children won't "overhear" incidental language if they can't perceive soft speech. I didn't get any data at 35dB, but our audiologist did do aided discrimination at 55dB. With both hearing aids, Nolan has a wonderful 96% discrimination at 55dB (via sound field, using both hearing aids).

On the bright side, his "dead" hearing aid slowly came back to life. I simply kept running it through the Dry and Store, changing out dry bricks, and it began to give its feedback whistle again. For the first few days, it would cut out after an hour or two, but after about four days in the Dry and Store, it was "back to normal." Our audiologist checked it and it was right as rain, so that is a HUGE relief. We have been using Ear Gear ever since, just to protect them from humidity and sweat.

Since Nolan has decided to show some progression in his hearing level, another hearing test has been scheduled three months out from this one: he'll go back into the booth on October 8 to determine if his right ear is going to stay at 70dB and to watch his left ear - since it is likely to drop to the level of the right ear, too.

We also discussed new hearing aids. Nolan's Unitron Element 8's are still working, though we are having more frequent maintenance issues with them. They are also not as "up to date" as other hearing aids. I would really like to get Phonaks for him, because I am in love with his FM system. Phonak also makes water-resistant hearing aids that have sound-recover technology.

The hearing aids we're thinking of getting are the Phonak Nios S H2O, though I'm a bit nervous about selecting these because they have a maximum fitting range of 70-75dB hearing loss in the low frequencies. Since Nolan is already sitting at 65dB there, there is a great likelihood that he will "outgrow" the ability of these hearing aids to amplify his loss. When Nolan loses hearing, it tends to be 15-20dB in a single frequency, and the affected frequency is unpredictable. The Nios S can handle the high frequencies well (up to 90dB HL). I'm just a tad concerned about the low frequencies - I'd hate to get this hearing aid and then wind up needing a Naida (power aid) 2 years later. We'll see what his hearing does over the next few months and make our decision from there, I suppose!

The Phonak Nios S H2O