Thankful

The list of things I am grateful for is too long to list. Also, I have to get back to my bake-a-thon. Instead, I thought I'd post what Nolan is thankful for:

Monster Trucks
Kitties
Driving Monster Trucks
Dinosaurs
Yellow Monster Trucks
Playing

Fast Monster Trucks
Cookies
Hippos
All the Monster Trucks
Spiderman
Chuck E Cheese
My Monster Truck

His list seems more of a Christmas wish list than items for which he is grateful to have. Also, his list is actually much longer than what I wrote down (I forgot choo choo trains, Santa Claus, and a dozen other variants on the "Monster Truck" theme).

The boy never. stops. talking.

And for that, I am grateful.

A Week Off

We have no scheduled doctor appointments this week. Actually, Nolan's well-child appointment was scheduled for Tuesday, but I moved the appointment because I don't want him to miss out on his preschool's big Thanksgiving feast. Unfortunately, I moved it to December 3, so I have to call and reschedule that appointment due to the repeated pH probe.

Anyhow, I am extremely grateful for a doctor-free week. Not having to make the 70-mile-each-way trips to Buffalo is a wonderful thing. This week, we are tearing up bread for stuffing, thawing a turkey, and making Pilgrim hats in preparation for Thanksgiving.

Nolan is taking to the Zantac, though the Zantac liquid tastes rather bitter. When I approach him with the Nexium syringe, he takes the medication gladly. The Zantac, however, causes him to wrinkle his nose and make a run for it. Hopefully the new medication will keep his stomach pH up- I have no idea what will happen if he fails the next pH probe.

Here's to a week filled with crafts, feasts, and general gratitude!

Dagnabbit!

pH probe, the evening before it fell out.

The good news:

The ENT's office gathered enough data from the pH probe, even though it fell out a bit early.

The bad news:

The Nexium isn't getting the reflux under complete control. Nolan was showing pH drops while eating (which we saw) and also while he was sleeping.

The revised plan:

Nolan is going to have Zantac added to his medication schedule. Our medication alarm clock is going to work overtime for the little guy. He'll take Nexium 30 minutes before eating breakfast in the morning and again 30 minutes before dinner. He'll take Zantac at 7:00pm and again at 7:00am.

Second verse, same as the first:

Before doing surgery, we need to do another pH probe, to verify the acid reflux is being controlled by the two medications. We will have the pH probe placed on December 2, and will return the box on December 3. They will try to read the information from the probe as quickly as possible.

In the meantime, I am going to think alkaline thoughts. I deeply hope the Zantac helps control all the acid with my little GERDling!

Still Waiting...

I called the ENT's office yesterday, since I haven't heard anything with regard to the pH probe data. The front office person wasn't sure if there was sufficient data, and told me the nurse practitioner has a note to give us a call. We're still waiting- hopefully she'll give me a call today so I can stop fretting. I am operating under the assumption that "no news is good news."

I scheduled Nolan's cardiology appointment for November 30. I secured an afternoon appointment, which is excellent because it means Nolan won't have to miss school. Despite his attempts at mimicking catatonia in some social situations, he really does love school. He gets pretty upset when he doesn't get to go! Looking at his class picture, he is definitely one of the smaller kids in the class (though not the youngest by any means).

Nolan with the other 2 and 3 year olds.

Picture day is always interesting with three year olds. He had irrepressible cowlicks and a snotty nose, and I am ever so thankful for the photographer's photo editing skills. He insisted on wearing the galoshes- he definitely has his own fashion sense!

Update on the pH Probe "Fallout"

I called the ENT's office as soon as the phone line opened up this morning. The office personnel told me to bring it back to the office, and they would download the information from the recorder and decide if enough data was obtained.

Dennis took (another) day off work and we loaded the boys into the truck. Our ENT maintains two offices, and we were going to the site in Depew (on the southern edge of Buffalo). I walked into the office and the nurse saw the probe in a plastic baggie and exclaimed, "Oh, no!"

I handed them the probe and explained that it came out sometime between 3:00am and 5:50am, when I fell asleep. Unfortunately, the probe has to be sent to the main office in Amherst (north of Buffalo) to determine if enough data was gathered. We still don't know if it has to be repeated or not.

We got about 14 hours worth of data, so hopefully that will be sufficient. They will download the data from the recorder tomorrow, and will give us a phone call as to whether we need to repeat the pH probe study or not.

While I was there, they handed me the paperwork for Nolan's surgery (the supraglottoplasty) on December 14. They also handed me the order for the EKG and the echocardiogram. For some reason, I thought the echo and the EKG would be performed at the time of surgery, but it makes sense that we would do these studies prior to undergoing major airway surgery.

I'll call the cardiologist tomorrow to book an appointment for the EKG and echo- I hope to get an afternoon appointment so the boys don't miss preschool.

I will be very, very glad when January arrives and all of this hullabaloo is over!

*&%#$%!

Sometime between 3:00am and 5:00am, Nolan pulled his pH probe out.

If the ENT doesn't think there is enough information on the probe (likely), then we're going in for another pH probe placement/run.

This. Totally. Sucks.

pH Probe, Round 2

Driving up to the ENT's office is always stressful for Nolan- nearly all of his medical issues are ENT related, so poor "Dr. B" always gets to handle the difficult procedures.

We talked about his mixed hearing loss (big relief that the sensorineural portion is stable), and she checked his tubes (they look great). Nolan has another cold- his second since the bronchoscopy was performed. He never catches a break with the germs that fly his way.

She showed us a video of his laryngomalacia. His aryepiglottic folds* (near the epiglottis) completely occlude his airway when he's sleeping. He is also developing laryngomalacia when he is awake; we were able to hear some stridor while he was playing with the backpack on the floor. The severity of his laryngomalacia (with the associated severe GERD and severe obstructive sleep apnea) means that a supraglottoplasty is necessary. There's really no way around this one, unless we want to chance high blood pressure and heart failure from unattended chronic obstructive apnea.

Speaking of reflux, we managed to get the pH probe placed. Nothing makes you feel like the Worst Mommy Ever than helping to papoose your child to have a probe passed up his nose and into his throat. Dr. B came in and helped place it, since Nolan wouldn't swallow- she heard him crying and came in from her lunch to get it placed as quickly as possible. I did take some "No-No's" (arm restraints), but he has been leaving the probe wire alone, so I took them off. He's currently watching Toy Story 3 and cuddling with a blanket on the couch.

Still a bit "gaggy," but happy to watch Pixar cartoons.

As an interesting aside, the FDA passed an "acidified food" requirement (21CFR 100-169) in the 1970's, to prevent the formation of Clostridium botulinum (botulism) in canned foods. While this is great for preventing spoilage and possible food poisoning, it isn't such great news for acid reflux sufferers. The pH probe read 4.5 when Nolan ate some canned pears this afternoon, and dropped again when he drank a Capri Sun "Roaring Water." We try to avoid processed foods as much as possible, but it looks like we are going to have to be extra vigilant when it comes to any canned or pre-processed food.

Dennis and I used pH strips to test the pH of the "Nomato" brand ketchup and spaghetti sauce alternative: it has a pH of 4.5. Believe it or not- the food marketed to acid reflux sufferers is acidified!

Bananas have a pH of 5.7

We scheduled surgery for December 14. His ENT will perform a bronchoscopy prior to surgery, to verify the severity of the laryngomalacia before embarking on the supraglottoplasty surgery. He will also have an EKG and echocardiogram performed, to check on the status of his heart. He has had severe obstructive apnea for a while now, and we need to make sure that his heart hasn't suffered from the apnea (cor pulmonale is a potential consequence of long standing apnea).

In addition to trimming the aryepiglottic folds (which will also strengthen them as scar tissue forms), Nolan will have his lingual tonsils pared down. The poor kid gets to go through two tonsillectomies in less than a year. He had his "regular" tonsils removed in April, and the lingual tonsils will be removed when the ENT does the supraglottoplasty this December.

The recovery from major airway surgery is rough- he will spend a full 2 days in the pediatric intensive care unit (possibly 3 days), and may have trouble eating and drinking for around 2 weeks. Hopefully he will latch onto his popsicles and will be right as rain by Christmas.

We return to the ENT tomorrow to have the pH probe removed. We will get the results in about 2 weeks- hopefully the Nexium is doing its job!

*My gift to you: an enhanced vocabulary.