Skip to main content

EGD results...meh...

{Alternate title: because sometimes Mommy is crabby and bitter and just needs to rant}

I got one of those phone calls this evening that makes my heart race. The only time the GI doctor has EVER called me on a Friday afternoon was when Raya was having problems and needed an urgent endoscopy. I had finished my chemistry midterm {super crappy chemistry midterm for which I totally deserved my grade of 76% but hoped for a magically undeserved "A" anyway} and was cruising the aisles of the local thrift store when an unknown number popped up on my phone. I answered it and all I heard was, "Hello, this is Dr. S..." and then the call got dropped. Stupid smart phone. I stood still in one place when she called back so it didn't get dropped again but the whole time I was waiting for her to call back, my heart was pounding wondering why she was calling me late on a Friday afternoon.

Turns out the adrenaline rush was unwarranted. She was calling to tell me that the biopsy results for Raya's EGD had come back. I'm so frustrated even typing it, but once again everything is normal except for some superficial irritation in part of her stomach. No eosinophils, no reflux esophagitis, no ulcerations in her stomach, and yeah, just nothing helpful. We're still waiting on the h. pylori test but she's expecting that to come back normal because the irritated tissue didn't have the typical h. pylori look to it. So once again, I went into an EGD just HOPING that we would be able to find something to explain all of the symptoms she's been having (dramatic increase in reflux, frequent bleeding from around G tube, decreased motility/delayed gastric emptying, feed intolerance, multiple positive food allergies, etc.), and once again, we've got nothing.

So what does it mean that her EGD was normal (except for the area of irritation in her stomach)? It means that once again, we have no visible medical explanation for why she suddenly went from tolerating a 250ml bolus feed in 25 minutes to not tolerating anything faster than 250ml over 2 HOURS. The only theoretical explanation we have once again is the fact that we know Raya's motility and visceral hyperalgesia is very closely linked with her sensory processing disorder, all of which are highly likely to be exacerbated by stress and anxiety, which she's apparently had a great deal of recenly between moving and starting school and whatever else stresses out a 3 year old. That means that there was nothing we could have done to prevent her flare-up and nothing we can do about it except treat her symptoms, meaning slow her feeds down. We've tried the few motility meds that we felt comfortable trying (there aren't many to choose from and most of them are crap) and had no measurable results with them, so all we can do is manage her feed intolerance by slowing down her feeds to a point where she's comfortable and wait around for her stomach to be able to handle a higher feed rate.

She brought up the possibility of going to an Anat Baniel method practicioner again. I took her to one for a couple of months when she was 9 or 10 months old and I really liked the lady and the work that she did with Raya. The problem was that A. it's completely out of pocket, and B. to see her was a 120 mile round trip. The time and the expense are both prohibitive.

When I was talking to her doctor about how to proceed from here, she said, "You just have to understand that it's normal for motility to wax and wane, and for a kid like Raya with visceral hyperalgesia, those waxings and wanings can happen for no apparent reason and there's really not much you can do about it." I know that and it sucks. I've come to EXPECT crappy motility in the event of a viral illness but this came out of nowhere. I definitely did not expect the stress of moving to wreak such havoc on her body. This is why I hate being asked if this is "something Raya will outgrow." (no offense to anyone who has ever asked me that, I understand why you ask and I probably would too) For most of the year this year, we've felt like we were moving forward. Moving painfully slowly, but moving forward. Then all of a sudden out of nowhere, she can no longer eat any of the foods she liked because she's now had enough exposure to develop allergies to them and we're back to having her on the pump for 8 hours a day. She hasn't been on the pump for 8 hours a day in well over a year, so it feels like a big punch in the stomach. Do you know what a giant pain in the butt it is to make a little kid wear a backpack all day long? At least she's finally gotten used to wearing it again. She was pretty resistant when we had to start making her wear it a couple weeks ago because she'd been doing SO well for such a long time that she wasn't ever having to wear it.

If stress and anxiety can set her back like this, then does that mean that whenever anything stresses her out, her stomach is going to stop working? Another question that nobody can answer. Dysmotility is unpredictable but the fact that it seems to be triggered by stress and anxiety could definitely impact her life for a long time.

Her GI said that if it was anybody but Raya, she'd say to do 3-4 days at the 2 hour feed rate and then start working back towards where we were before but because it's Raya and we know that Raya can't handle drastic change, we need to let her stay at 2 hour feeds for a while. How long is "a while"? That's anybody's guess but hopefully in the near future we can start reducing the amount of time she's on the pump again. Oh, and that's IF we can keep her from getting sick. Viral illnesses slow motility and undo progress with oral eating. We've seen it before and we'll probably see it again. We've worked really hard the last 3 years to keep her protected from being exposed to germs. The only places she really ever goes are therapy and doctor appointments and an occasional trip to the store with me. I always scrub down the shopping cart handle & kid seat with the wipes they have at the door and tell myself that it will get rid of nasty shopping cart germs whether it really will or not. Now that she's in school though, there's not much I can do to protect her. I'm not there to make sure nobody else rubs their snotty nose and touches toys that Raya plays with or keep her from taking a drink out of somebody else's cup or eating somebody else's cracker that she's allergic to. Some kids get the flu and don't look sick until they start puking, and heaven forbid she get a virus that includes puking because who knows what that will do to her stomach.

So yeah, I'm frustrated. I get that it might be hard to understand why I'm upset that the doctor has never found anything significant on her endoscopies but I am. I think it's something you can't fully understand until you're the parent of the kid who you KNOW has something wrong but nobody can figure out exactly what it is beyond theories and guesses. If she wasn't having the symptoms she has, then I'd be thrilled to know that we've ruled out certain things, but she IS having symptoms. Maybe if we had a diagnosis associated with all this crap, I would have a better idea of where to set my expectations so that I wouldn't keep getting my hopes up and then getting figuratively kicked in the stomach over and over again every time something like this happens. I also don't want to sell her short and set my expectations too low. It's all just such a guessing game. And as much as I'd LOVE to believe that someday she'll just magically grow out of it, whatever "it" is, that's not going to happen. For one thing, the phrase "grow out of it" implies that it's something that will just resolve itself someday. We've had to work our butts off just to get to where we are right now (a very stubborn 3 year old with anxiety issues and sensory issues who doesn't vomit 4-5 times a day anymore or gag at the mere sight of a spoon anymore and actually wants to eat but is now allergic to most of the things she likes). So yeah, none of that is going to just go away on its own and it won't surprise me if she develops allergies to other foods too. Factor in that we're now dealing with a very strong-willed toddler and the light at the end of the feeding tube tunnel just keeps getting smaller and farther away. I don't know why all of that feels like a pile of bricks on my chest right now but it does.

To add to my crappy mood today, her face has broken out in 2 different rash-type things this evening. She must have gotten into something she's not supposed to have because she has the little spots around her mouth & nose (and diaper rash) that she gets when she eats wheat. She's had that for a day or two now. Earlier today I noticed that her left cheek was bright red (here we go with that again...) and this evening, that cheek was bright red AND bumpy, and the other cheek was slightly less bright red and also a little bumpy. You can kind of tell in this very cheesy-face picture:

Her keratosis (chicken skin) has flared up really bad this week too. She usually only has it on the front of her thighs and a little bit on the back of her arms but right now it's pretty much all over her arms and legs. Eating food she's allergic to tends to make that worse. I swear if she's developing an allergy to corn now, I'm throwing in the towel on trying to feed her food. I'll just let her keep eating ice all the time since that's all she ever wants to eat now anyway.

I always thought that the maintenance phase of all of this would be so much easier than the acute discovery phase when we were doing all kinds of tests, putting out fires left and right when new problems would pop up, and still had so many possible ideas of what her diagnosis could be. In MANY ways it is. I definitely get more sleep now than I did then and her medical needs are a lot less demanding than they were. For some reason, I expected the stress level to go down once we had either found a diagnosis or ruled out all the "bad" stuff, but right now I feel like all we've done is exchange one set of stresses for another. I'm very thankful that she doesn't have any of the scary things she's been tested for. Sometimes I just wish I had a simple answer to give when people ask me what she has.

There. I think I'm done. I apologize to anyone who read that but I feel a little better now. And please don't feel bad if you've ever asked me what Raya has and if she'll outgrow it because those are questions that everybody asks. Heck, if there was somebody that could answer those questions for me, I'd ask too, and that's why it's hard for me when people ask me. They're questions that I wish I had the answers to. I don't mind when people ask me, I'm just frustrated that I can't give a better answer than my standard, "Well, we don't really know what's caused her problems and we HOPE she'll grow out of it but it's going to take a while."

And don't get me wrong, I still appreciate all of the wonderful blessings that continue to flow from this trial in life, and I wouldn't trade her or anything that comes along with her for anything. She is such a bright spot in my life. This has just been a stressful and frustrating week. Surgery and midterms should never occur in the same week. I have greatly appreciated the kindness of friends who have helped out this week with the other kids, brought dinner, and offered support and a listening ear and I'm so grateful that once again, our loving Heavenly Father has watched over Raya and kept her safe. We really do have a lot to be grateful for, even on days when we (mostly I) feel like the deck is stacked against us and crappy moods prevail.

Her stoma is pretty sore but she's doing really well. She's told me several times today that her tubie hurts but there's not a whole lot I can do for her. We really can't put anything on it other than Mepilex and gauze. Her surgeon said not to put any creams or ointments on it yet so aside from Tylenol, I can't really give her anything. I tried taping the extension tube onto her stomach but she's not used to that anymore either and it keeps kinking the tube so I stopped trying to do that. Hopefully it will continue to heal nicely and stay small.

To end on a positive note, she had a great day at feeding therapy. I was taking the aforementioned crappy chemistry midterm so Donny took the girls to Raya's appointments. Raya ate 4T of applesauce, 2T of black beans, and a few nibbles of sweet potato and carrot chips. Not to be outdone, with the help of Raya's wonderful new therapist, Kaida has FINALLY learned to say her "k" sound. I can't even describe how sweet it was for me to hear her say "Kaida" instead of "Taida". The look on her face when she said it for me for the first time was absolutely priceless. She is SO proud of herself and I'm so happy for her. I think it will boost her self-confidence knowing that when she introduces herself to people, they won't end up calling her "Taylor" or "Tayla". (both lovely names, just not hers) She still has some work to do but I think it will come quickly now that she's felt what it's supposed to feel like to say "k".

Comments

  1. I completely understand your frustration. I go through many similar feelings myself. Most days I'm fine but some days the feelings of helplessness and worry are overwhelming. Your rant is completely valid. And I think it helps others who read your blog (like me) who have a medically complex kid to realize they aren't alone, that feeling overwhelmed or helpless at times is normal.

    My stock answer for if he will outgrow his issues: some kids do, some don't and of those that do its impossible to know when. In my case, this is usually more satisfying to others than a simple I don't know.

    ReplyDelete
  2. I do sypmathise. Right before the tube went in, we had an endoscopy and bronchoscopy to try and explain some of the severe refluxing, oral aversions, chest problems and verify a link between GI and respiratory. They saw the odd thing but nothing significant at all; both sets of specialists were flummaxed as they were so expecting to find something notable. Its so tiring just ploughing on not knowing when (or if?) things will turn a corner, significant or othewise. The current working diagnosis is that my little girls mild CP is affecting her gut, oesphagus and swallow although we need an MRI to confirm that and I'm not holding my breath. Good luck with Raya and well done on your 76%; I think considering the week(s) you've had that is pretty damn comendable! x

    ReplyDelete
  3. This is probably a stupid question because I am sure she has been tested for everything under the sun, so please forgive my ignorance. :) Anywhoo, has she been tested for cystic fibrosis? There are many variations of it, and there is a big GI aspect to Cf. Poor gut absorption leads to so many issues including skin. If not, she might benifit from digestive enzymes to help break down the food so it can be absorbed. Ok, sorry if all of that was already known. Just wanted to give it a shot.

    On a different but similar note. My daughter has been primarily tube fed since age 2 months. She is now 8 years old. We've gone through cycles of being able to do bolus feeds, to running the pump at 70-100 and then advancing to run it between 300-400. And for no reason at all, she wont be able to tolerate the feeds again. So I feel your pain. We just roll with the punches. When I am running the pump slower and it seems to take forever, I give her little breaks and then put it back.

    Last thing, I swear!! Our surgeon told us to use Calmoseptine for irritated buttons, and that stuff is a miracle. It tingles on the skin and puts a protective barrier from the formula and stomach juice. Works really well for us. I heard another mom say she used a make up sponge cut to fit around the tube. Ive not tried it but it seems to work well for her. It keeps the button from spinning and irritating, and is spongy enough that it does not constrict. Anyway. Hope that helps.

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …