Phone Call

Another picture from the Strong Museum of Play

Nolan's surgeon just called. I've never had a doctor do that before.

The crux of the conversation? Nolan is weird.

Not the child, of course, but the medical history and test results.

He was looking at the upper GI bariums, which were normal (barring one episode of reflux). And the gastric emptying scintiscan, which is normal for reflux but shows delayed gastric emptying. And the two pharyngeal pH probes, which were done while Nolan was on medication.

He doesn't have the original esophageal pH probe or the biopsy report.

And so we have some issues.

Since the scintiscan shows delayed gastric emptying in the absence of reflux, a pyloroplasty would be performed along with a Nissen - it is likely his problems are primarily motility related.

He's also concerned about some cellular changes that are casually mentioned in one report. If true, he would need serial monitoring.

And the pharyngeal pH probes are rather cutting edge- since they aren't generally used in the pediatric population, he's putting those aside for the moment. Nolan obviously has airway reflux - heck, he CHOKES on the stuff, but the pharyngeal probes were done on medication and he'd rather have a traditional pH probe.

I will fax Nolan's original pH probe study to the surgeon tomorrow. He'll have to wait a bit longer for the esophageal biopsy results and the pathology report, because I don't have physical copies of those. I have to wait until we get the consent form from the GI doc and then I'll mail it back - once I do that, the GI doc will fax the medical reports directly to the surgeon.

So we aren't scheduling surgery yet. Things aren't so straightforward as the surgeon originally thought, and he's concerned there is some bigger, underlying issue with the progressive nature of the reflux and airway. His exact words were,

"These kids aren't always what they seem. We're learning more about them all the time and sometimes there's something bigger."

Great. I seriously don't want something "bigger."

On the other hand, what an amazing, wonderful, incredible doctor. Taking time at 6:00pm to call a parent to get clarification on medical reports that he is ACTUALLY reading. Trying to figure out the mystery that is Nolan.

Since the regular esophageal pH probe was done when Nolan was 2 years old (along with the gastric emptying scan), he really wants them to be repeated. Which would mean pH probe #4 for the little guy (this time an esophageal one, like the original probe) and GES #2. He would also like another endoscopy/biopsy to look at the little guy's esophagus.

But he's going to talk to the GI team at Strong Memorial first, to get a consensus. And he wants to review the other records.

Looks like things are going to be topsy-turvy for a while.

More Nexium Battles

Our insurance policy changed at the beginning of the year - not a big deal in the scheme of things, but we knew there would be a few snafus, particularly with so many providers and a medication that requires pre-authorization.

To head off problems with the little guy's medications, I called in his Nexium prescription early. Unfortunately, it was too early, so I had to wait to call it in. I tried again a week later, and it was still "too early." At this point, we only had 6 packets of Nexium left (3 days' worth), so I became a little concerned.

I called the next day and Rite Aid miraculously had Nolan's prescription in-house. I figured it was the result of some system error on their end, but at least his medication was available for pick-up. The pharmacy technician rang up the medication packets, and the total came to $900.

I looked at her and said, "Um. No."

She looked at the documentation stapled to the medication and it said, "individual not covered on plan."

I handed her our insurance card and said, "He's covered. We've used this card several times over the past few weeks and he is listed as a dependent."

Rite Aid had me wait for about 40 minutes as they called the insurance company. Our insurance company told Rite Aid they were too busy to take the call. Rite Aid gave up.

Which meant, of course, that my child didn't have the medication he needed.

I called Dennis at work and he looked at our insurance information online - Nolan was most certainly listed. Of course, our insurance company is having a huge battle with something known as competence: the "start date" listed on our cards was in error (the cards stated 02/01/12 as the effective date, when the real effective date was 01/01/12). The insurance company also had Matthew's name written down as "Motther." I suspect they have outsourced some of their labor. Still, the problem wasn't on the insurance company's end - it was on Rite Aid's.

In any case, I finally managed to get 3 packets of medication from Rite Aid, enough to cover Nolan for one more day.

I called this morning to see if they had sorted everything out, and the pharmacy tech said,

"We don't handle insurance issues. You have to call your insurance company."

I took a deep breath. It was a good thing I was at home and on the phone, or I would have started screaming. Mentally, I thought: "You imbecile! It is your problem, not the insurance company's! I can't fix your system, which is obviously malfunctioning!" Since this wasn't very nice, I didn't say it out loud.

I managed to say, "Talk to the pharmacist. See where the medication is. Then we might not have a problem, OK?"

She checked with the pharmacist and the medication is ready, all for the normal Co-Pay. They had obviously fixed their "system error" that was causing Nolan to appear as if he wasn't covered by insurance.

While we're stuck with our insurance companies and the battles that entails, we are certainly NOT stuck with a particular pharmacy. As soon as I feel the energy level, I'm switching to a different one. We certainly don't need added hassles to the regular difficulties in life!

At least Nolan will get his medication tonight. Sheesh.

Rochester: Pediatric Surgeon Consultation

At the Museum of Play

We drove up to Rochester on Sunday, a day before Nolan's pediatric surgeon appointment. Rochester has a few kid-oriented museums, so we went to the science museum on Sunday and the Strong Museum of Play on Monday morning. Nolan and Matt had a blast, and we really enjoyed making time for some fun amidst the stress of the surgeon appointment.

The appointment was at Golisano Children's Hospital, part of Strong Memorial Hospital. Every time I go through Nolan's history, I realize how long it is. And I always forget something - though I was fortunate to have Dennis with me this time to help fill in the gaps. I do have his history typed up in a nice word file, but somehow managed to forget it on this trip (argh).

The surgeon did ask us why it had taken so long to get a referral for a fundoplication - with Nolan's symptoms, airway involvement, and severity, he should have had a Nissen quite some time ago. We had to explain that we (the parents) were the cause of the delay - his ENT wanted to refer him for surgery quite some time ago, but we wanted to exhaust every other avenue prior to doing this surgery (which, frankly, scares the bejeebies out of  us).

The surgeon explained the procedure and how the fundoplication works - the fundus of the stomach is wrapped around the esophagus, and when food enters the stomach it fills the wrapped fundus, exerting pressure on the esophagus to keep anything from going UP.

We discussed our concerns, namely the idea that the surgery couldn't be "undone" if there were problems (he told us this was not true - while it is generally not "undone" because the person really needs it, a Nissen wrap can be taken down if necessary).

We also discussed things like gas bloat, wretching, and other scary, unpleasant side effects that can come with a fundoplication. Nolan is at risk for gas bloat, for a couple of different reasons:

1) He uses a C-Pap to breathe at night. This forces air down his throat, and sometimes that can get forced into the stomach.
2) He has delayed gastric emptying

Since Nolan is "complicated" and a little on the small side, it is common to insert a gastrostomy tube (g-tube) when the fundoplication is performed. If his emptying becomes a problem after surgery or he gets horrible gas bloat, we will be able to vent his stomach to release the trapped air (or stomach contents, in the case of delayed emptying). The g-tube can also be used to deliver medication and nutrition, if needed.

The type of gastrostomy tube that will be placed is called a "Mic-Key." A lot of people simply refer to these as a "button" or a "mickey." It is a small, skin level device that won't interfere with the little guy's daily activities, and if he doesn't need it we can have it removed.

The surgery (for the fundoplication) is done laprascopically, though sometimes the surgeon has to convert to an "open" procedure. From my basic understanding, this has a lot to do with visibility and how the liver covers the operating site.

The surgery requires a 5-7 day stay in the hospital following the laprascopic procedure, and a 7-10 day stay for an open procedure (we're really, really hoping the surgery can be completed laprascopically). While he's in the hospital, I will be trained on g-tube care and how to replace it if it should fall out accidentally. This is a big issue because our local hospital doesn't treat kids and lacks the necessary supplies - and a tube that falls out has to be replaced immediately.

If Nolan doesn't need the tube for venting and is eating well, the tube will be removed about 3 months after the operation. Removal is simple - you simply deflate the retention balloon, pull it out, and stick a bandaid on it - the wound heals in about 2 days.

There is also a restricted diet for a while and the recovery does take some time, but once everything is settled he should be free from reflux-related problems.

In the meantime, we are having his GI medical records sent to Strong Memorial. Since Nolan is "medically complex," the surgeon wants to be absolutely sure that there are no big contra-indications to the procedure. Once he has all of the records and verifies that the procedure is safe, the surgery date will be scheduled. We signed the consent form in his office, so we are simply waiting for the records to get sent and reviewed.

Ear Candy

We picked up Nolan's new earmolds on Friday - red and white swirls. He calls them his "candy cane" hearing aids!

Easy Dentist Appointment

The picture is from yesterday, but since today was basically a repeat of yesterday, I'm posting it.

The dental hygienist cleaned the tooth and we were able to get away with NO drilling. A huge relief to me (and to Nolan, too, though he doesn't know it). She dried the tooth, put the sealant over the soft spot, and sent us on our way.

For 10 minutes and $25, this was probably the easiest and cheapest dental appointment we've ever had!

Since we don't ever want to go a day without a doctor appointment, Matt's Molluscum decided to get very infected. The poor kiddo has boils all over his legs where the Molluscum lesions were. I'm calling the pediatrician tomorrow to get him in, because one looks extremely angry and infected. If you don't know what Molluscum is, be thankful. It's a pox-related virus that preschoolers get (and the incidence is increasing). They measure the infection time in years and the pox lesions spread during that time. Nolan got the virus from his brother, but fortunately hasn't had any of his lesions get infected. Both of my boys have eczema, and apparently the two don't mix well.

Nolan will be thrilled to be the one NOT going to the doctor's office, I'm sure. Judging from Matt's reaction to the dental X-ray machine, I suspect Matt will not be very cooperative for the pediatrician. Ugh.

Trip to the Dentist: Reflux Strikes Again

I took both kids to the dentist today, and Nolan chose to go first. He climbed into the chair and let the hygienist clean and count his teeth. He is amazingly good at the dentist, probably because having teeth cleaned is a walk through the park compared to some of the things he goes through at the ENT's office. The dentist came in for a look, and both discussed a "soft spot" on his enamel that looks like acid damage.

"Does he have acid reflux?" they asked me.

Boy, does he ever. Words couldn't convey how severe his reflux is, so I just nodded my head.

I'm actually surprised that he's avoided dental issues with the level of reflux he has. Fortunately (for dental reasons) the airway reflux is less damaging to teeth. Still, his very breath has acid droplets in it and that eventually causes damage. He's also a tooth grinder, so his teeth are wearing away in the back. Lovely.

I get to take him back in tomorrow for his first "filling." They're actually billing it as a "sealant" because that is cheaper - we don't have dental insurance and the drilling will be minimal. They may be able to get away with no drilling, and simply seal over the soft spot. I am fervently hoping they won't need to drill. Fortunately, we caught the small area of decay early before it had a chance to do any real damage.

Of course, Matt was next. He was NOT so easy. They wanted to get his first set of dental X-rays, and Matt refused. This was as close to the machine as he would allow himself to get.

He would back off, talking constantly. He wanted to know where the wires were. How the machine worked. Why he needed X-rays. Why he had teeth.

He balked at the machine for a full forty minutes. Forty. Minutes.

I would have given up long before those hygienists did. I'm pretty sure they're angels or something. They finally got Matt to bite the yellow stick and hold still for 15 seconds. We got the X-rays. His mouth is beautiful - no cavities! His adult front teeth are right there and should start to pop through soon. He has something they called "buckling," which I had as a kid, too. His adult teeth are coming in BEHIND his baby teeth. Mine did the same thing - I walked around with a double row of teeth for a while. It was kind of cool in the "I have shark teeth" sort of way.

They may have to pull his baby teeth if they don't loosen on their own - hopefully that won't be necessary. Because after the trauma of the dreaded X-Ray machine, I don't think any of us would live through a Pulling of the Teeth.

I think I owe those two hygienists chocolate. Or dinner out. Or a vacation to Hawaii. They put up with a lot today.

Nolan goes back in at 2:00 tomorrow afternoon. Matt, fortunately, doesn't have to go back in for another six months.

Great Christmas Vacation

Grandpas are fun

After a remarkably mild November and December, snow has finally descended upon Western NY. We had a wonderful (rainy) Christmas with Dennis's parents, and the boys were glad to have time off from school.

Nolan has been doing quite well lately - no real nausea and only the occasional cough/gag over the past couple of weeks. His nose is running with the sinusitis that accompanies the LPR reflux, though - I don't think we've had more than 2 days free of sinusitis since last September. He has managed to wear his C-Pap all night long for two nights in a row - a record!

His ears are clear, and his hearing actually seems to be better than it has been in a long time. I know his audiogram is probably the same, but he's responding to sounds unaided, and he hasn't done that in a long time. I sometimes wonder if the reflux causes inflammation or other issues with his hearing, particularly with the sinuses involved.

Both boys go back to school tomorrow, and we will get back to our normal schedules. Nolan has his earmold pick-up scheduled for Friday, and then we meet with the pediatric surgeon to discuss the possible fundoplication on Monday the 9th. The travel won't be bad as long as the snow stays away - the drive to Rochester is 3 hours long and the threat of lake effect snow plays a number on my nerves. Hopefully Mother Nature will cooperate and give us a few days off from the onslaught of winter!

Here's to a Happy New Year filled with healthy and growing children!