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Tuesday, January 29, 2013


Elemental. That's the word of the day. (well, it was yesterday when we had a GI follow up. Today's word was enema but we'll focus on elemental for now.) Elemental is not my favorite word and it won't be Raya's either when she realizes what it means.

We had our longest ever stretch between GI appointments: 4 whole months! We saw her towards the end of September and made it clear until the end of January. We did have that little endoscopy/surgery in December and we've exchanged several emails and a couple of phone calls in the last month, but still, 4 months without an official GI visit. It seemed like forever.

Raya weighed in at 14.4kg (31 lbs 12.7 oz) and I already forgot how tall she was. She had gained 1 lb and 3 oz in the 4 months since we saw GI last. Not a great weight gain but she's still in about the 60th percentile for weight-to-height so we're not concerned. I'm really not surprised either considering how many nights I've had to drain whatever was left in her stomach to keep her from feeling awful. She's lost a lot of calories that way so I was actually surprised that she gained at all.

Raya was in rare form yesterday. She's usually really reserved and refuses to talk, especially TO her doctor. She loves her, but she gets pretty bad anxiety when we go to appointments. Yesterday was a completely different story though. Before the doctor came in, Raya was giving me a little performance of a Taylor Swift song that one of her friends at school sings. She kept repeating, "Nevah evah....baa to-dethah..." with one hand on her hip and her bum wiggling. It was both hilarious and adorable. The shocker was that after I had been talking to the doctor for a few minutes, she asked Raya to sing & dance for her and Raya actually did it a little bit. It was barely above a whisper but she wiggled and it was cute.

We had a lot to talk about. I actually typed up an agenda for our appointment. (*pausing for laughter*) Yeah. I printed 2 copies of it, one for her and one for me. I feel like a total nerd handing her an outline but it sure makes it easier to remember everything we need to talk about when it's all right there in outline form. :)

Item #1: We haven't been able to increase her feed rate at all like we had hoped after her EGD & scar tissue removal in December. Bummer.

Item #2: She's had an increase in reflux that actually got worse after she got over the cold and ear infection(s) she had in December/early January. She's telling me 3-4 times a day "there's puke in my mouth," we can hear her refluxing and swallowing, she actually spit up 3 times on Sunday, she's been waking up miserable late at night several times in the last month to 2 months due to GERD and delayed gastric emptying (DGE), and she's even started asking me for Carafate (ulcer med) and Maalox or Tums. A couple days ago she wasn't feeling good and asked me for "the yutty white meh-cine," aka Maalox. I knew she really must not have felt good if she was actually asking for it.

Item #3: She seems to have delayed gastric emptying again/still, and especially with solid food. She's been waking up late at night not feeling well and will still have 4 ounces of formula & partially digested food in her stomach from as much as 5-6 hours earlier.

Item #4: Food allergies and protein intolerances.

Item #5: Should she have a sigmoidoscopy with biopsies to rule out any lower GI involvement since most of her reactions seem to have primarily lower GI symptoms?

Item #6: Should she have a gastric emptying study with solids?

Item #7: Should she go back to an elemental diet? (if I could have typed an audible groan on this one I would have)

So we're feeling pretty stuck & frustrated right now. There's not any rhyme or reason to her increase in reflux. She's on an adult dose of her PPI (reflux meds) and increasing that would not help. Sometimes we go to doctor appointments and the doctor (whichever doctor it happens to be that time) will say something that feels like a punch in the gut. Yesterday it was something to the effect of, "She's 3 years old and this is not going away. Do you think it's time for a fundo?" That knocked the wind right out of my sails. For the record, no, I don't think a fundo is a good idea for her, but this is also not a doctor who is a fan of doing fundos. {FYI, fundo=fundoplication, aka Nissen; anti-reflux surgery that's done by taking the top of the stomach (aka fundus) and wrapping it around the lower end of the esophagus to tighten the sphincter that is supposed to keep gastric contents from refluxing into the esophagus} I have a lot of reasons for not wanting to do it that I won't go into right now, but the main thing is that before we do that, I need to feel like we've done everything possible to avoid it. The first thing we need to do is Item #7 on my list : go elemental. However, before we do THAT, I wanted to do the sigmoidoscopy to see if there are any abnormalities in her colon. That needed to be done before removing food from her diet because if there is any type of food reaction going on, it will go away once the food is removed. It just so happened that there was an opening for a "flex-sig" today, so we did that this morning. The pictures of her colon looked nice & pretty and we don't expect to see anything abnormal in the biopsies.

So now that the flex-sig is out of the way, she's going back on an elemental diet. She'll be going back to Neocate Jr, which is what she was on before we switched to Peptamen Jr 2 years ago. If her reflux improves (and her skin issues improve or go away), then we will know that even though we've never been able to find a diagnosis to support it, food is a problem for her. If that's the case, we will keep her on the elemental formula and add in one food at a time and watch for reactions. However, if that DOESN'T help her reflux, we'll have to do something else. There are basically 2 options and I honestly don't like either one, so I'm crossing my fingers that the formula change will work.

Here's the sucky part. It just seems cruel that after a good solid 2 years of trying to get her to eat, we're now going to take away EVERYTHING but Dum-Dums. It's going to be hard. She may not eat more than 200 calories a day, but there are certain things that she has learned to actually like. She likes quinoa pancakes, tortilla chips, beans, fries, peaches, applesauce, and she even ate a few nibbles of a taco on Sunday night. How the heck am I supposed to A. keep her from finding things and eating them, and B. feed everybody else in front of her? The Dum-Dums will definitely help, but I don't want them to lose their bargaining power. We've already stopped eating certain things because she gets too sad when she can't have any. I've actually found enough alternative ingredients that I could probably make her an allergy-friendly pizza, but that will have to wait. This elemental thing could just be temporary. If it doesn't change anything then we may as well go back to the Peptamen that we have a big fat stockpile of. Which reminds me of the other sucky part, switching back to Neocate Jr means that my 2 beautiful years of ready-to-feed formula convenience are over.

Now that we've done the flex-sig, we'll hopefully be doing a gastric emptying study with solids just to {hopefully} confirm that her stomach is not emptying solids well. I already know it's not, but the test may or may not show that which is why I haven't pushed for it sooner.

Today has been kind of a rough one. Instead of spending the day studying for my chemistry final that I'm planning on taking tomorrow (after Raya's MRI), I spent the morning holding a stressed out, scared, starving and thirsty little girl while we waited for her procedure. Then I spent the afternoon trying to study but had about a hundred interruptions, mostly from my darling children, and couldn't hardly stay awake to study anyway. Then I changed the bloodiest poopy diaper I've ever changed, tried to study some more, got interrupted about a hundred more times, left a message for the nurse about aforementioned bloody diaper, talked to the nurse when she called back to tell me just to keep an eye on her, let the kids make their own burritos for dinner, yelled at them when they were supposed to be in bed and weren't, took Raya's temperature because she felt a little warm (no worries, it's 36.5C, aka 97.7F), and sat down to try and study again. I've been thinking this afternoon & evening that this week feels so ridiculously unbelievably insanely busy compared to even the busiest weeks we've had before, and the funny part is that I don't even care. We had a GI appointment yesterday, flex-sig today, sedated MRI tomorrow, 2 therapies on Friday, and my finals for chemistry and anatomy. Plus everything involving the other 4 members of the family aside from Raya and me. It's busy, but so what? I don't feel stressed or anxious even though I probably should. Maybe that's not a good sign, who knows. Either way, we'll survive the week and keep truckin'.

She was all smiles during check-in but then she got stressed/anxious/scared
Sleeping it off in recovery
Sleeping it off some more in the car
Bring on the Dum-Dums
"snuddeling" with Nurse Kaida

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