Surgery Scheduled

Nolan's surgeon called on Monday. Nolan's case had been presented to the GI team, and they reviewed all of his records. Nolan's reflux is very severe, but his records are a little confusing.

His initial tests (in 2009, prior to diagnosis) were:

Upper GI Barium X-Ray: Entirely Normal (normal anatomy, no reflux noted).
Gastric Emptying Scintiscan: Delayed Gastric Emptying (gastroparesis) noted, normal for reflux.

The other tests from the ENT's office included:

Pharyngeal pH probe, done ON medication (Nexium): significant airway reflux detected.
Pharyngeal pH probe, done ON medication (Nexium + Zantac): significant airway reflux detected.
Upper GI Barium X-Ray (2011): Normal anatomy, one episode of reflux noted.

Fortunately, the remainder of Nolan's tests from the GI doctor's office arrived. Those tests included:

pH Impedence Probe (dual channel): Severe reflux, slow bolus transit time.
Endoscopy with Biopsy and Pathology report: Reflux esophagitis with cellular dysplasia (Barrett's Esophagus).

Whether Nolan has delayed gastric emptying or not is completely insignificant now, because he has cellular changes in his esophagus - these cellular changes are very, very rare in children. The severity of Nolan's reflux, coupled with the respiratory symptoms, is enough to warrant a Nissen Fundoplication. With the cellular changes evident at the age of two, a Nissen Fundoplication is the only real way to proceed.

Barrett's Esophagus is a condition that predisposes people to cancer. The cells exhibit specific changes, and over the course of time, can turn into esophageal adenocarcinoma. The average age of diagnosis for Barrett's Esophagus is 55 years - in other words, the average person with Barrett's is a senior citizen.

Since children with this condition are so very rare, many GI doctors will not see a child who has these changes in the esophagus. I'm not sure how Nolan's original GI doctor missed it, or why she didn't ever do a follow-up endoscopy and surveillance biopsy, but I suppose the point is moot. The GI team at Golisano's saw it, and that is what matters. His GI care will be in Rochester now, anyway, so the little guy will be appropriately cared for.

The surgery (Nissen Fundoplication with Mic-Key button placement) has been scheduled for March 7 at Golisano Children's Hospital (part of Strong Memorial). The surgeon will do a repeat endoscopy with biopsy prior to the surgery.

If the biopsy shows that his esophageal cells have reverted to normal, then we can rest assured that the Barrett's is gone. If the biopsy shows that the dysplasia remains, then Nolan will be scoped and biopsied every six months for the rest of his life. If a scope shows changes in the pathology of the cells (advancing stages of this pre-cancerous condition), then further action would be taken at that time (I won't go into that now).

I'm still flabbergasted that our original GI doc never did a follow-up scope. I know the condition is very rare, but surveillance is mandatory with dysplasia - the risks are simply too high to ignore.

I'm also kicking myself, because this was one of the very few reports that we did not have a copy of. We still don't have an actual copy of the report - I only remember being told (verbally) that the pathology report showed "ectopic gastric mucosa" and "blunted villi," not having any idea of what those two things meant (and searching the interwebs for useful information with those words was futile).

The good news is that there is now a team in place to follow Nolan and to monitor the histological changes. I can't express how grateful I am that we made the decision to transition to Rochester for Nolan's care. And, hopefully, the new biopsy will show healthy, normal cells that haven't been altered by repeated acid exposure.

There are a few research articles on Barrett's Esophagus in children - I'm posting this here for my own reference:

Barrett's Esophagus
http://www.nature.com/gimo/contents/pt1/full/gimo44.html

Barrett's Esophagus in Children: Diagnosis and Management
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1242875/

Endoscopic Surveillance of Children with Barrett's Esophagus
http://www.hon.ch/OESO/books/Vol_5_Eso_Junction/Articles/art282.html

Barrett's Esophagus in Children: A Study of 31 Children:
http://journals.lww.com/jpgn/Fulltext/2004/06001/P1048_Barrett_s_Esophagus_in_Children__A.1172.aspx

Ear Goop and Hives

Nolan's ear was absolutely packed with gunk this morning. I called the pediatrician and managed to get in at 10:45am. The nurse practitioner was quite busy with sick kids this morning, so we weren't seen until 11:30. She took one look at Nolan's ear and prescribed Ciprodex drops AND an oral antibiotic. Thank goodness - this kid has a hard time beating ear infections, and hopefully we'll knock this one out in a week or less. We've been calling him One Ear for the past couple of days - it is amazing how much losing an ear really affects his ability to compensate for the other (hard of hearing) ear. We have to repeat things quite a bit more when one ear is completely gone, even when the "good" ear is aided.

Then it was time for Bumpy. Poor, itchy Matt. The nurse practitioner looked at the rash for quite some time, and couldn't decide if it was viral or an allergic reaction. The problem is that the rash looks viral when it starts off - lots of single, itchy, pimply bumps:

The rash is also spreading like a virus - only on the extremities and not over the entire body.

After the rash has been in place for a day or so, though, it turns into welts. Which look like an allergic reaction, not a virus.

A second pediatrician was called in to take a look. He said (and I quote), "Now there's a puzzle."

We don't really know what it is, so they said to keep him on Benedryl every six hours, and to keep him cool (heat can make allergic welts worse). So no school tomorrow and no hockey tonight, at the very least. If the rash gets worse in any way, we're to call immediately.

I hope it just disappears so we can forget about it.

We then went to Rite Aid and played "Have Fun at the Pharmacy."

Fortunately, my kids are easily entertained and think that a water cooler is the coolest thing on earth. Antibiotics (for Nolan) and Benedryl (for Matt) in hand, we went home. They're hanging out and enjoying the day off school - and Matt is thrilled that he gets a bonus day off.

The pediatric surgeon also called this morning, but that's enough material for another post (or two), so I'll save it for tomorrow. At least we have Bumpy and One Ear on the path to wellness!

Ugh.

This picture sums up our weekend:

Nolan has another ear infection.

In other news: Grass is green! Rain is wet! Dogs bark!

Acid Reflux, I hate you. 

When it rains, it pours. Matt hasn't been "well" lately, either. He's had a molluscum infection for approximately... forever and developed staph infections in several of the lesions. He was cultured to see if it was MRSA (the methicillin resistant staph bug that can be particularly nasty), and the results came back as regular, plain old staph. I never thought I would be happy for a staph infection, but there you go.

The worst boils were lanced and he was placed on Bactrim, a rather strong antibiotic. The boils healed, though the underlying eczema and molluscum infection are still going strong. On Friday night, I noticed that he had a few more bumps than usual on his legs. Was he getting a virus? I posted a picture on facebook so everyone could play "guess the rash."

The poor kid is itching like crazy. Ideas like chicken pox (he's been vaccinated) and Hand Foot Mouth Disease (though HFMD doesn't itch) were brought up by the Almighty Google. The welts began to swell and spread, and I started suspecting an allergic reaction. By Saturday morning, it was on his hands arms, in addition to his legs and spreading up to his waistband.

His knees and elbows are particularly bad, and are one giant coalescence of The Great Itch.

The good news: a new urgent care opened up in our community. The bad news: the urgent care is closed on Sundays!

We are giving Matt lots of Benedryl and applying caladryl lotion to the welts. 

I am calling the pediatrician in the morning to get both boys in - I hope they have some sort of two-for-one deal going on. 

New Eyes

We picked up Nolan's new glasses today. This pair has the cable arms that we love so dearly, and fit his little face a lot better than the online glasses. They're Disney frames, so Nolan is quite excited to have "Mickey Mouse" glasses. There used to be tiny Mickeys on the end of original arms, but the Mickey Mouse emblems had to come off to put the cable arms on.

We have kept the glasses purchased online for a "back-up" pair, but hopefully we won't need them!

Fixed Ears

Nolan's new ear hooks came in the mail yesterday - I was rather relieved to put the new hook on, as the other (broken) hook was rather loose. When the little guy had his tantrum last week, he had snapped through the threads - while the hearing aid was still usable, I was in constant fear that it would fall apart at school and that we'd lose a hearing aid! The new hook is nice and secure.

I called the pediatric surgeon's office yesterday to make sure all of Nolan's records had arrived. I knew his scans from the ENT were already there (they were what prompted the surgeon's phone call two weeks ago), but I wanted to make sure the pH probe, biopsy, and pathology report had arrived from the GI doctor's office. Everything has made its way to his office, so we should hear back on "The Plan" soon. The next step will probably involve another consultation with the doctor prior to surgery (if surgery proceeds) and will definitely involve another gastric emptying scan. In the meantime, I continue to bake and eat pastry. I hope things get settled before another week passes, because I am starting to measure the waiting time in pounds gained.

Nolan Has Vacation Plans

Nolan came home from school the other day, bubbling over with excitement.

"Mom, we need to go to LONDON!"

Since that isn't a phrase expected out of the mouth of a four year old, I just stared and him and repeated, "London?"

"It's a CITY! A big city!"

I was surprised he knew about London, since we haven't exactly studied world geography yet. I asked him what he knew about London.

"It has bridges, Mom. I need to see the London Bridges. They're falling down. In the RIVER!"

Oh.

London Bridge Is Falling Down.

"Nolan, did you know that Mommy and Daddy have been to London?"

Eyes wide, he said, "Did they take a key and lock you up?"

I took out our photo albums and explained that the river in London is called the Thames, and that the bridges are not currently falling down. I also explained that they aren't locking up any "fair ladies" at the moment.

A bridge in London - not falling down

He seemed rather disappointed. Apparently, he considers watching bridges crash into rivers a ripping good time. Especially if a few ladies happen to get locked up in jail at the same time.

I have a feeling that England will be on the Future Vacation Plan list for Nolan. The Tower of London sounds right up his alley!

The Waiting Place

This is one of my least favorite places to be.

Waiting.

Waiting for records to be mailed.

Waiting for the phone to ring.

Waiting for decisions to be made.

I send the consent form to the GI doctor on Saturday, so they should be receiving the form in the mail today (if they haven't received it already). Hopefully they'll fax Nolan's records to the surgeon quickly - I want to know what the GI team at Golisano Children's thinks, and what we need to do next.

I don't like the aimless feeling of not knowing what is going to happen next: I cope better when we have a solid plan in place.

In the meantime, Nolan is doing great. He's eating like a champ - on "off" days, he eats mostly yogurt and grapes, but he makes up for it on good days. His nose is filling up with the yellow-green stuff again, but he isn't too congested. He has had a few dizzy spells over the past few days, and I'm not quite sure what to make of those. My best guess is something vestibular, but who knows? He claims the earth is spinning and falls down or staggers a bit. I'm keeping an eye on those - he seems fine otherwise, so hopefully the "spinny" will just disappear and we won't have to worry about it anymore.

Now I'm off to eat some chocolate bars, because chocolate is a very healthy way of dealing with stress.