Wednesday, February 20, 2013

It's been a while - part 1: GI update

It's been a while.

Here's the thing... apparently it's expensive to have a baby at the hospital!!  The bills just kept trickling in.  And because I work part time, I didn't have a pay check for 6 weeks because I didn't qualify for paid FMLA leave.  So, when my computer broke and the Apple Store told me it would cost $300 to send it away blah blah blah, I had to wait because we couldn't afford it.  And we couldn't take the baby back and get a refund.  And blogging from the ipad sucks.  And I can't include any pictures.

But now I'm back, and boy is there a lot to update you on!!  First up, GI.

Sadie had 8 appointments in January.  Plus movement therapy.  Plus a trip to the zoo.  Plus a stay at Ryan House and a birthday party.  We were pretty busy!  I'll get to everything eventually, but this post is strictly about our new GI adventure.

The day Sadie had her GI appointment was also the day of her 3-year well check.  Chelsea came with me because the idea of carting 2 kids around the Children's hospital (PCH) for 3+ hours caused me to get a little sweaty (I sweat when I'm stressed out).  In case you've forgotten, Chelsea is our respite provider.  I like to refer to her as Sadie's best friend.  Plus, I hate going to GI appointments, they are stressful enough as it is.  I was dreading it and I told Chelsea this.  She didn't get it until it was over and we were leaving.  If she had had a soapbox, she would have been on it ranting about that GI appointment for at least an hour!

First off, the weight check meant nothing.  Because Sadie has been experiencing precocious puberty (yes, she's 3 and she's starting puberty...more on that later), she's been growing like crazy.  We completely skipped size 3 clothing.  We literally went from size 2 to size 4 and 5 in like 3 months.  Therefore, of course she weighs more than the last time we saw the GI doctor!!  But in case you're wondering, Sadie weighs 37 pounds (yes, you read that right).

Then came the barrage of questions from the nutritionist.  I thought I came prepared, but she always asks me something I don't know and makes me look stupid.  This time it was about calories in the coconut milk.  I get so flustered and nervous when I have to remember something like this off the top of my head, especially when my ability to be a good mother is in question (I doubt it really is, but it feels that way), that I think I changed my answer about this 3 or 4 times!  Chelsea told me she felt bad for me, she felt like they were ganging up on me.  She said it felt like it was 2 against 1.

The good news is that what we're feeding Sadie is acceptable.  Although, it was determined that because I'm giving her coconut milk from a can, which is used primarily for cooking (and has 140 calories per 1/3 cup, by the way), they are not required to fortify it with calcium.  The dairy milk wasn't agreeing with Sadie, and we don't do soy, so rice milk fortified with calcium was what was suggested.  I'll save my comments about A. fortifying food with chemicals vitamins, and B. how much of a calorie cut that would mean for us for another time when they can be more helpful.

The bad news is that she still has reflux.  I asked the doctor about a Nissen Fundoplication procedure.  This basically is where they tie off the bottom of her esophagus so that food can still get down, but nothing can come up.  It's like a duodenum prosthesis! (ha!)  I am so sick of reflux.  There is puke on every chair Sadie sits in, on her wheelchair, on her car seat, etc.  We carry around rags everywhere we go, and it's embarrassing when she does it in public.  She does it at therapy and it prevents her from being able to be in certain positions that are good for her body.  And it's gross.  And embarrassing.  And gross.  However, our doctor is not a fan of the fundo procedure, and explained also that Sadie is not really a good candidate for it, because she is eating so much by mouth.

I explained that if we could have a minor surgery to solve the reflux problem I would opt for that over medicine and more medicine.  He looked at me like I'm crazy...apparently he doesn't feel the same way.  This is where I gently reminded him that HE'S not the one who A. has to remember to administer the medicine, get the prescription filled, call HIS office multiple times when the prescription needs to be renewed, etc., and B. still has to clean up puke when the medicine doesn't work.

The thing is a fundo can also NOT be helpful.  It can cause Sadie to retch, because stuff CAN'T come up.  Or it can have other side effects.  And I've heard both sides, that it's awesome and been so helpful and the need for meds is gone...and that they wish they'd never done it, it only made things worse, and if they could go back in time, they wouldn't do it.  So, I don't know if it's the answer.  I only know I am sick of the puking.

Instead, the doctor told me he'd like to see where her food is going and how quickly she's digesting.  He got particular curious when I told him that giving her 8-10oz every 3 hours had GREATLY reduced the reflux (before, we were doing 4-6 oz every 2 hours).  He said that is the opposite of what usually works.  So, he ordered a gastric emptying test.

Monday, President's Day, we went and checked into Radiology for a 2 hour test to watch what happens to Sadie's food after she eats.  They put some kind of radioactive material in her yogurt (not barium), and, after I fed it to her, they strapped her into this big machine and she laid there for 2 hours while they took a movie-Xray of her digestion.  Crazy, right?

Check out these pictures...

Under that warm blanket, Sadie is strapped to the table.  And she was a little too big for the velcros, so she's duct taped too!!  And yes, laying like this for 2 hours right after she ate made for some nice puke-hair.  Lovely.

This is the whole machine.  She was such a good sport.  They turned on some music for her, Ezra slept in the Ergo Baby carrier, and I ate snacks while reading Harry Potter on my phone.

I thought it'd be cool to watch a video of her food digesting.  Boy was I wrong!!  Instead I saw this.  It looked like a cluster of stars or something weird.  It moved every once in a while, but I wasn't able to distinguish anything at all.  Boring.
So, there you have it.  We don't know yet the results of this test, or really what the doctor is going to say about those results...I imagine he'll suggest more medicine, which is exactly what I DON'T want.  But, whatever.  I will give her medicine if it stops the puking/erping/reflux.

Just stop the reflux.  Please!!

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