Wednesday, January 11, 2012

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.


Kyla said...

ACK! And also? Kind of yay. A doctor who READS records and CALLS is super rare and awesome. I hope his thoroughness pays off and you guys will be headed in the right direction soon. Hang in there! I know it is nerve-wracking to be left teetering on the edge like this.

TheSweetOne said...

Wouldn't it be amazing if he found the "bigger" and it was actually a simpler fix? That's what I'll be praying for for you. Sorry it's a longer wait though...

Julia said...

I agree with SweetOne -- don't know what the odds are, but that would be such a beautiful outcome that I'm going to focus all my hoping on that.

monica said...

First off, you have an amazing doctor. Good for you and him! I agree with thesweetone, isn't there always that hope that the battle is so much simpler then imagined. hope so in this case.

you're a great mama!

p.s. reading all of the labels at the bottom of your post is a serious tongue twister.

Herding Grasshoppers said...

AMAZING! I mean, to be honest, I hate the uncertainty, but WOW. What an amazing doctor!

Hang in there, dear friend.

rouchi said...

tough times and we have a tough mom in you. Hang in and am sure things would be fine. You take care Leah !!