Monday, August 22, 2011

EGD 101 / Tyler's scopes

Tyler's celiac serum panel came back abnormal so we were finally referred to a GI (gastroenterologist). The only official way to diagnose celiac is to have a positive intestinal biopsy, hence the need for a GI. After hearing good things about Dr. McOmber we set an appointment. We met with him at the end of Febrary, Tyler had his first EGD and FlexSig procedure the beginning of March.

Skip over this part if you already know about EGDs and FlexSigs. Quick medical lesson for those unfamiliar with the process: EGD is short for Esophagogastroduodenoscopy. [Translation: they put a tube down the esophagus, through the stomach, ending at the beginning part of small intestine. Along the way biopsies are taken. The biopsies are then viewed under a microscope to check for eosinophils. A normal biopsy should have, at very most, 15 eosinophils per high powered field.] FlexSig is short for flexible sigmoidoscopy. It's, as Mister C would put it, a "violation from the other end" to get colon biopsies.

Tyler and I checked into Phoenix Children's Hospital (PCH) and put on his purple gown. We waited and waited. We had a pre-op consult with Dr. McOmber and the anesthesiologist. We walked to the GI procedure room, I gave Mr. TyTy a kiss, then I was asked to go to the waiting room. I was a bit taken back cause in the pre-op consult the anesthesiologist he said I could be there until Tyler fell asleep. Instead the anesthesiologist decided to pry Tyler from my arms, Tyler screamed like only the youngest of 5 children can scream, and he said, "You can leave now, the door's over there."

The unpersonable anesthesiologist would soon become the least of my worries.

I waited in the waiting room about 30 minutes before they were done. Doctor M came out carrying a few sheets of paper with pictures on them. He showed me the pictures.

1st scope, March '11

Me: "Ooooo.... I'm not a doctor but that doesn't look very good." (Not knowing what swollen body part was photographed.)

Dr. M: "Well the good news is I'm 99.99% sure we're not dealing with celiac. The bad news is this picture. This is Tyler's esophagus. See the lines and the furrows in the first picture? Those shouldn't be there."

{Instead awkward pause from me. I hadn't read up on "esophageal furrows" prior to the procedure. I'm feeling kinda stupid, err, uneducated at this point.}

Long story short, there was certain for Eosinophilic Esophagitis but we had to wait for biopsy results for true diagnosis. Tyler woke up screaming before he was wheeled into the recovery room. We waited 45 minutes to ensure he could tolerate fluids. Tyler and I left the hospital, me a bit perplexed but ready for this allergy thing. Mister C and I could totally handle a kid with a few allergies. We just make sure we don't feed him shellfish, egg, or peanuts right?

HA! Boy was I was naive.

Test results came back the following week. Tyler had 57 eosinophils per hpf (supposed to be lower than 15) in his esophagus and some present in his colon. Tyler's body "sees" food as an infection and sends white blood cells to attack his esophagus and colon.

Add allergist to Tyler's list of doctors.


We were referred to an allergist, Dr. Shimamoto, and Tyler started an elimination diet. We started by eliminating the top allergens in hopes Tyler's appetite would increase. An increased appetite is usually a good sign that reactions are under control. Tyler's appetite decreased. We began an elemental diet. The only thing he was allowed to eat/drink was an uber expensive hypoallergenic formula you can't buy at regular stores. (Expensive = $50 for a 14.1 oz can of powder formula. One can lasts about a day and a half.)

His appetite continued to decrease. I took him for frequent weight checks. He would gain a few ounces, lose some, gain a little more. It was a vicious cycle both physically and mentally. Enough was enough and they finally placed an NG tube.

The NG tube was a temporary fix. 4 weeks later the NG tube was replaced with a g-tube and they scoped him at the same time. This would be an elemental diet baseline reading.

2nd scope, June '11

A nice, smooth esophagus. :) Good job, Tyler! They took 3 biopsies at different locations in his esophagus. His eosinophil counts were 1, 6, and 1. (I blame it on a chip his 3 year old brother gave him. "But Mom, Baby TyTy liked it.")

We began introducing foods again. We started with green beans. We added applesauce. We added pears. When I say "we added" I mean we would give him the little bit he wanted to eat. A good day would consist of 2 baby spoon bites, 2x a day. Nowhere close to what a healthy toddler 14 month old would want but for Tyler it was good. We introduced sweet potatoes. Peeling, slicing, and baking sweet potato chips. He'd eat one, we'd get excited.

Then came the next scope.

3rd scope, July '11

Doh! One step forward, two steps back. We'll get the results on Monday.

Tuesday, August 16, 2011

New Post Coming

It has been a whirlwind at our house since Tyler's g-tube was placed.

In a month and a half there was: g-tube put in, washing machine out of commission for a week, OB visit, bought new washer, California trip, 3 of Tyler's 4 older brothers started school, attempt to get back on schedule, 2 GI appointments, follow-up visit w/pediatric surgeon, allergist visit, 15 month well-check w/pediatrician, homework for 3 kids, feeding therapy evaluation, another OB appointment, multiple phone calls to PCH billing department, trying new foods, battling with Apria (they suck!), numerous calls to insurance, Tyler refusing foods, and a husband working 12+ hour days for more than a week straight has not left much time to blog.

New post coming soon (just in time for me to start school on Monday).

What fun. :)

Sunday, June 19, 2011

? (for other EE moms)

The GI wanted to wait until after Tyler's 2nd scope and "personal baseline" before starting food(s) that had reactions on the patch test. The scope is done so we started apples last night. He ate some. By some I mean 2 tablespoons. We tried again this afternoon and he took a small bite then wasn't interested. He refused the apples by turning his head while also pushing the spoon away with his hand. It's crazy how quickly all the memories came rushing back from when he was 9 months old. We are lucky though, at least he isn't screaming the second we put him in the highchair.

My question is.... how aggressive do we get with food trials after being on an elemental diet for 4ish weeks? I am not sure what he is trying to tell us. I don't know if it is from negative food association or if he is starting to react internally and doesn't feel good. He is 3 days post-op of g-tube placement so not having a hearty appetite is expected. I am just wondering when do we let him to guide us and when do we push a little more? (Past experience has shown that if we let him guide us, he probably wouldn't be alive cause he has always hated food.)

Friday, June 17, 2011

G-tube (PEG) is in, we are home

All things considered, yesterday's surgery went pretty well. I'm extremely sleep deprived but thought I'd share some pics from yesterday and today before I go crash for a few hours. What a difference between days 1 and 2.

Day 1

Tyler w/diapered bum hanging out.
Sometimes you can't take the father out of the boy.

A perfect tummy.

A quick pre-op picture with Daddy

And Mommy

After the surgery (he was a bleeder)

Later that evening, hooked up to morphine drip

- - - - - - - - - - - - -

Day 2

He was crabby so I let him play with the camera just so I could change his diaper. (Not so bad considering I hadn't showered or put on make-up, running on 1.5 hrs of sleep.)

Waiting for the pain meds to start working.

His crib (aka The Birdcage)

Him back to being playful.

Sunday, June 12, 2011

Thursday is a Big Day

I am still working on a post with the details of Tyler's GI appointment last Tuesday but my brain isn't cooperating enough for me to get it posted tonight (from mental exhaustion or pregnancy brain, I'm not sure which).

For those whose who didn't get the message I posted on facebook, Tyler is going in for his 2nd scope and is getting a g-tube placed this Thursday. I am confident Dr. McOmber and Dr. Graziano (his pediatric surgeon) will take care of our sweet boy. I am not sure my head has fully absorbed the reality of our boy getting a surgically placed feeding tube in his belly in 4 days. Can it be removed when/if things improve? Certainly. The thing that gets me is him having a permanent exterior scar. Somehow it psychologically takes me to a place I hadn't ever anticipated being when we initially received his diagnosis months ago. Truly ignorance is sometimes bliss. Interesting how quickly the human mind can learn/accept new things when your child has a chronic illness don't you think?

Friday, May 27, 2011

Quick Weight Check / Allergist Visit Update

Tyler had an allergist visit yesterday so I figured I'd kill 2 birds with 1 stone and do a quick weight check at the GI's office since it's less than a mile from the allergist office. (The allergist doesn't have an infant scale and the plop-him-on-the-scale-with-clothes-and-a-diaper weight skews any progress.) The scale read 19 lbs 12.4 ounces, a +7.4 oz gain in one week. Wahoo! To say the ng tube is working is an understatement. Usually Tyler would take a month or two to gain that much weight.

Dr. Shimamoto was pleased with the gain and would like to try apples or pears next week. He is hoping to have Tyler on a couple foods before we do another scope. Originally we had an appointment to see McOmber in July but I got a call from McOmber's office this morning saying they could get us in June 7th. I can't wait to see what the scale says in a week and a half.

Friday, May 20, 2011

Tyler's new look

Through the nose, over the ear, then taped to the back.

Placement wasn't a fun thing for me. The nurse has done it for 19 years, only hit the airway once. "Chances of doing that are slim."

She does it perfectly and quickly. Mister C gets it down with no problem. I get halfway and pause because I feel something hard. I freak out and pull it out. The nurse asks if I saw what happened to him. I was so focused on how it "felt" going down I wasn't paying attention to his face. Apparently the nurse and Mister C noticed he started turning a blue-ish color. (I hit his airway.) I had to try it again and now Tyler is beyond pissed. I get it down and he is screaming bloody murder. We are so focused on consoling him we don't notice all the formula in his stomach was emptying on the table behind him.

Mental note: Make sure the end port is closed when inserting.

Here is to hoping he won't pull it out when he's in his crib.

We had to do syringe feedings last night because the pump isn't getting delivered until this afternoon. So far so good.

*Post edit: The tube lasted a little over 48 hours before he yanked it out. His brothers now get to see firsthand how "fun" it is to put a feeding tube in.