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GI follow-up, test results, and some reminiscing

It's amazing how the mere anticipation of an important appointment can be exhausting. And nauseating. I normally schedule appointments like that for early in the morning so that I don't have as much time to stew over things but today's appointment wasn't scheduled 3 months in advance like they usually are so we were stuck with a 2:15 appointment.

I don't know why waiting for this one was so intense for me today. I really love her GI doctor and Raya really loves her too. Raya was rather cute and charming at her appointment today. :)

Nevertheless, waiting for appointments always makes my stomach churn. It's not like there were going to be any huge decisions made or any bombs dropped. I was anticipating disappointing results from the impedance study. They weren't completely disappointing (as in completely NORMAL), but there was one thing that was COMPLETELY disappointing and not at all expected. There was a page attached to the results (which our GI had not seen yet since they had somehow been sent to and evaluated by the wrong GI...) saying that one sensor on Raya's impedance probe turned out to be broken. I don't know how many sensors there are on a probe, but I think it's either 6 or 8. They are at varying heights from the bottom to the top of the esophagus, and I don't know which one was not working but if I had to take a guess based on the report, it looks like it might have been the second one from the bottom. The note that was left by the RN who had the pleasure of torturing Raya putting the probe in Raya's nose said that one sensor was broken and she wasn't sure how trustworthy the results of the test would be. Whoa there, stop the bus. Not sure how trustworthy the results are because one of the sensors broke?!?!?!?!?!?

?!?!?!?!?!?!?!??!#@&        *$@&$^$*@&#         $*@#^&$*

You have GOT to be kidding me. After I cleared the swear words from my mind, we went over the report and the notes the other GI had written on it. It was pretty underwhelming. She had slightly higher than normal "weakly acidic reflux", no acid reflux (um, she's on high doses of Prilosec so duh), and 1 episode of non-acid reflux. First of all, I was unaware that it is considered normal to have ANY reflux. How is it normal for stomach contents to reflux into the esophagus?! Apparently, some reflux is normal and she was slightly above normal with the weakly acidic reflux but that's it. Not surprisingly, most of the weakly acidic reflux episodes were while she was laying down. In 24 hours, she only had "refluxate" (i.e. stomach contents) in contact with the sensors for 0.2% of the time. Unless the broken sensor missed some and messed up the numbers. It's really REALLY hard to read the doctor's handwriting (big surprise) but it looks like it says "GER/persistent regurgitations on PPI; No evidence of pathological GER; few episodes of weakly acidic reflux are present _____(no idea what that word is) supine; consider maximized PPI (AM) + H2RA (____)"

So let me break that down. One part says she has persistent regurgitations on PPI (aka Prilosec). The next part says that she has no evidence of pathological GER (gastroesophageal reflux), which I believe means that it is a physiological thing rather than a symptom of a disease/condition, but I could be totally making that up. She has more reflux when she's laying flat, which is probably why she's more comfortable sleeping propped up. We spent some time discussing Raya's current medications and agreed that we should make some changes. She's been on her current meds for quite a while now. One question that has been on my mind a lot lately is if it's possible that her current level of acid suppression is inhibiting her stomach's ability to break down and digest food. Her GI doesn't think so though, or at least not to the degree that taking her off of the acid suppressants would make a significant impact on her gastric motility.

In the interest of trying something different to see if we get better results, we've decided to increase her morning dose of Prilosec and give her Zantac at night in place of the evening Prilosec dose. The reason for that is that Prilosec and Zantac act on different types of acid-producing cells in the stomach. Prilosec and other PPIs reduce the amount of stomach acid by preventing the release of hydrogen ions into the stomach that would be used to form hydrochloric acid, aka stomach acid. Zantac and others like it are histamine H2-receptor antagonists (H2RA). The cells in the stomach that produce hydrochloric acid are activated by the hormone histamine. H2RAs (aka H2 blockers) like Zantac and Axid bind to the activation sites on the acid-producing cells so that histamine can't make them produce acid. (It would be kind of like Zantac covering up a light switch so that histamine couldn't turn on the light.) So to make that short story very long, we're going to make changes to the way we are suppressing her stomach acid production and see if it has positive effects on her symptoms or not. If not, then we'll look more seriously at the possibility of doing a fundoplication, which is a surgical procedure that prevents reflux by wrapping the top of the stomach around the lower end of the esophagus in order to make it tighter so that what goes in the stomach will stay in the stomach.

The complicating factor for Raya with a fundo is that she has "suspected" delayed gastric emptying. (I use quotation marks because we have not confirmed it with any kind of test other than me emptying mass quantities of several hour old food from her stomach late at night when she feels like crap.) DGE means that if we prevent her from being able to vomit by doing a fundo but her stomach also empties more slowly than it should, she could end up with a lot of pressure in her stomach that would be painful and could cause retching and other issues. A pyloroplasty would loosen the pyloric sphincter and allow her stomach to empty more rapidly, but the risk there is that it could end up emptying too quickly and that wouldn't be good either. Throw in a whole slough of food allergies on top of those two things and you can probably understand why thinking about all of this, trying to figure out what to do next, and talking about it with her doctor nearly brings me to tears.  {*pausing to dab eyes*}

As I told her doctor, I am feeling really frustrated right now because it feels like everything is totally stagnant. It IS totally stagnant. On one hand, she's much better than she was 6-8 months ago, but that's because we've eliminated all food from her diet, put her back on elemental formula, and slowed her feeds down to 2 hours each. We have not added anything back into her diet since January when we took food away, and we have not been able to increase her feed rate without making her uncomfortable or making her spit up. We haven't been able to do a gastric emptying study with solid food to confirm her delayed gastric emptying because apparently there are no radiologists that are willing to block out 3-4 hours of time for one child. So yeah, feeling a bit stagnant. I appreciated her response to that though. When she said she understands my frustration, I believed her. I know she wishes we had gotten things more figured out by now too. She said to me, "I'm not trying to minimize your feelings at all, but you have to remember how far we've come in 3 years. The way she is now is so much better than the way she used to be!" And I completely agree.

We're not cleaning up constant puddles of vomit and spit-up anymore.
We haven't had an inpatient surgery or emergent hospital stay in over 2 years.
We don't have to feed her into her intestine 24 hours a day and drain bile out of her stomach around the clock anymore.
And we don't have to deal with an NG tube anymore! (or a GJ, that wasn't fun either)


Things were much worse 2 or 3 years ago. I'm extremely grateful for the progress we've made since then and thankful for the relative calm we've experienced in the last couple of months. I realize things could be worse. As grateful as I am though, I'm tired of standing still and I want to keep moving forward.

In other news, Raya has also lost weight since January. Not much, but a loss is a loss, and a loss is also not a gain. In the 4 months between September and January, she gained 1 lb 3 oz. Since January, she has lost about 4 ounces. Again, not a big loss, but when you consider that in the 4 months prior, she gained 19 ounces, a loss of 4 ounces could really be considered a loss of 4 ounces PLUS a lack of gain that could have been around 19 ounces again. In January, she was in about the 54th percentile for weight and now she's in about the 37th percentile. Not a good trend, so we're going to try increasing her calories by adding Duocal. The reason we're adding in Duocal instead of increasing her formula volume is that she's doing well with her current feed schedule, and we'd rather increase the caloric density a little bit than try to increase her volume. If she doesn't tolerate the Duocal, we'll increase her volume instead. It should be interesting to see what happens in the next couple of weeks with those changes.

She continues to have nightmares pretty much every night. She wakes up in a very agitated state and wants NOTHING to do with me until she's fully awake. Last night we miraculously got her to go to sleep in the girls' room instead of on the couch, and that lasted until about 2am when she came in my room and demanded in a grumpy voice that I snuggle her on the couch. I obliged her so that she wouldn't wake up everybody else at 2am with her crying and yelling for me to snuggle her. This evening, she fell asleep in the living room and about 3 1/2 hours later, woke up with another nightmare and is now nodding off on my lap. I miss sleeping in my bed but the couch isn't horrible and I will never complain about snuggle time with my anti-snuggler.

To end on a positive note, Raya did so unbelievably well at her appointment today. She was really happy the whole time we were there and didn't show any signs of anxiety when the doctor came in like she usually does. They interacted, played peek-a-boo around the exam table, and Raya gave her hugs and answered questions. She colored, played with the toys she brought, sang songs, ran around the room, climbed on things, and made a lot of noise, but it was happy noise. Some of the medical assistants there have been working there since before we became frequent flyers so they all know her and are very sweet to her and she loves the attention. She is a little pro at getting weighed & measured. Sitting still for the blood pressure cuff is another story, but she was so cooperative today. Except for when she colored on the chair with a pink crayon.

 
I was very proud of her today!

Comments

  1. "Things were much worse 2 or 3 years ago. I'm extremely grateful for the progress we've made since then and thankful for the relative calm we've experienced in the last couple of months. I realize things could be worse. As grateful as I am though, I'm tired of standing still and I want to keep moving forward."

    THIS! I feel like everyone else is perfectly happy to keep the status quo. Our son is so much healthier now, is happy and growing. But he is still on a feeding tube. He still vomits all the time.He still deals with significant reflux. He can't eat solid food. Things are stagnant. I don't know what to do to move it along.

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