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Like a car in desperate need of a tune-up

You know how sometimes you can tell when your car is due for an oil change? Nothing is blaringly wrong but you kind of feel like it's not running at peak performance. That's how Raya has been for a few weeks now. February was just flat out rough after having that hospital-worthy UTI and a week of high fevers, followed a couple weeks later by a cold. All of that took some time to recover from. Then she had a good week or so in March and then got a teensy little stuffy nose and all of a sudden her stomach shut down. Not completely, but to the point where she could no longer tolerate the 2 hour long, 8 oz bolus feeds and has been on 16 hour a day continuous feeds since then. After we slowed her feeds down, she did great for about a month. She was eating more often, eating more food at a time, and just generally doing well. She had lost 22 ounces between February and March so we increased her total calories from 1100 to 1250, and I stopped counting food calories and subtracting them from her formula calories. Things were great for a few weeks and then for no apparent reason, she started going backwards again. She's had a gastroparesis flare (meaning her stomach is emptying even more slowly than before), acidic diarrhea, oral intake almost back to nothing, not swallowing the food she does ask for, complaining about stomach pain daily, poor quality sleep, increase in behavioral issues, constantly clearing her throat, and just overall not doing as well as she had been. So yeah, girlfriend was due for a visit with her wonderful GI doctor.

To start off with the good news, after increasing her formula calories and not counting her food calories in her total, she managed to gain over a kilo since the end of March. If I calculated it right, she gained about 2 lbs and 12 ounces and is now up to 16.1 kilos. That's her new all-time high for weight. That made me feel better because A) she gained weight finally, and B) I was feeling like a weakling anytime I picked her up and carried her but now I know it's because she's heavier. Whew. She was 101.99 cm tall, so another centimeter taller since March. We are very happy with her growth. Haven't been able to say that for a while.

The appointment was great. As time goes on, I am more and more thankful for her doctor. It is so much easier to deal with disappointments and setbacks when you know that you have a good relationship with a doctor who is as disappointed about  those setbacks as you are and just wants to do the best they can for your child. On days like today, I have major anxiety leading up to the appointment and then as soon as she walks in and we start talking, I feel instant relief.

I wish I could say that we made a lot of progress and figured out what to do about all Raya's recent problems, but unfortunately there's not much we can do about a lot of it. The stool problem has been more and more problematic. She's FINALLY showing us that she's aware most of the time that she needs to go, but her stools are so loose (and have gotten more loose lately) that sometimes it just sneaks out before she can get there. She is trying, which I'm grateful to see, but it's really tough for her because of how loose her stools are. Not only that, but it's been getting more and more acidic because her formula is moving through her too quickly. If we don't get her cleaned up immediately, it burns her skin. This happened once before and we switched her to a peptide-based formula instead of the elemental Neocate, but we can't put her on any of the peptide-based formulas because they have hydrolyzed whey protein in them and she did not tolerate it. In order to try and combat the "rapid transit" problem, we are going to try giving her liquid loperamide (aka Immodium) and see if that slows down her bowels without making her gastric emptying worse. I hate adding in new meds but this is a problem that is making her feel lousy and if the Immodium works, so be it.

Next problem: gastroparesis flare. Raya has had delayed gastric emptying problems her whole life. Motility waxes and wanes, and right now hers is worse than it's been since she was probably 18 months old. Putting it in those terms stings but it's true. She wakes up late at night feeling yucky a lot. Last night she wanted me to empty her stomach so I plugged in a catheter bag and let it drain. The bag was full at 160ml and there was still more coming out, so that was at least 2 hours' worth of formula that looked and smelled completely undigested. There are really not many options for motility medications. We've tried most of the ones that are FDA approved for use in the US and really didn't have great results with any of them. We had talked previously about trying a GJ tube again. That was brought up again today and her doctor feels like we should not do it right now. If Raya's motility gets worse and she stops tolerating what we're doing right now with her feed schedule, we will have to go back to the GJ. I'm conflicted about it. On one hand, I think she could probably tolerate a higher feed rate to a J tube than she currently is to her G tube, which would mean less time on the pump. However, there are a few more risks with a GJ than there are with a G tube and there's a good possibility that she would have the same kinds of issues she had with her GJ tube before with bile backing up into her stomach. I agree that we are not to that point yet but it's still frustrating to not be able to do anything but sit and wait. For now, we will keep following her lead on eating food and keep using Farrell bags at night when she needs them.

Next problem: constant throat clearing. She clears her throat a LOT. I was pretty sure that it was related to post nasal drip from the bad allergy season we've had this year but she's been on Zyrtec for a while now and I haven't seen much change. Her doctor looked in her nose today and said that she didn't see any signs of post nasal drip, which means that the most likely explanation for the throat clearing is reflux. That theory fits in well with the gastroparesis flare because the more she has in her stomach, the more there is available to reflux up into her esophagus. It also probably explains why she has been having the occasional spitting up episode. What can we do about it? Nothing. Reflux meds make things less acidic but they do not stop the physical action of the stomach contents refluxing up into the esophagus. If we can get her stomach working better, the reflux will probably improve too.

It had been a long time since we had done any labs, so after she had a look & listen, she wrote orders for bloodwork and stool tests. I meant to snap a picture of the lab order sheet so I'd remember what all she ordered but I forgot to do it. I also forgot to tell her that the allergist had wanted to throw in the immunoglobulin labs so I guess we'll just have to get them next time we see him instead. I know she ordered a CBC, hemoglobin, vitamin D, zinc, and something to look at liver & kidney function, and then the stool tests to look for signs of inflammation or c. diff that could be affecting the diarrhea issue. Everything was peachy until it was time to get the blood drawn. Lab techs never listen to me when I tell them she's going to be a hard stick and a bad bleeder. They look at her veins and say that they think it will be fine because they can see a nice vein or two but inevitably, I'm always right. Although I have definitely gotten more calloused to it over time, holding her still to get blood drawn just sucks. Today she kept screaming, "Mommy, let go of me! I don't want pokes!" So that made me feel like crap. It took 2 pokes and a lot of digging around to get the blood they needed. I got really irritated when the lab tech kept implying that it was Raya's fault she couldn't get blood. She kept saying, "She really needs to relax her arm. I'm just right there and then she tenses up and nothing will come." Um, sorry but she's friggin 4 years old and you're digging around in her arm with a needle and you expect her to relax her arm?!

The labs should be back in about 5 days and hopefully I'll be able to collect the stool samples that we need tomorrow so I can get them in. One needs to be refrigerated and one frozen. I shall pause while everyone finishes gagging. Blech. Tomorrow I'll get the prescriptions for the Immodium and the super-duper bum ointment filled and hopefully the combo will help her feel better.

How am I feeling about everything? Frustrated. Stagnant. Kind of like running on a treadmill. We're trying to do everything we can to get her back to where she was but when it comes right down to it, her body is in control of the situation, not us. There's a part of me that wants to say, let's fly somewhere and have motility testing repeated or get into a cisapride trial or something, but I think those are the thoughts that come when I'm feeling desperate. I want to fix things but sometimes you just have to leave things alone and give them time. We know we can fall back on the GJ option if we need to. If things get worse, we have a plan and that's what I have to focus on to keep from being sad.

To end on a lighter note, this girl is so darn funny. She says things all the time that make me laugh. When we were driving to the appointment, she told me that I had not done her hair the way she asked me to. She said she had asked me to do a ponytail on the side and one in the back. I had put the front part in a little ponytail and then put all of her hair back into one ponytail in the back. That was not what she wanted. I explained to her that I knew what she wanted but that when we go to some places outside of our house, our hair needs to be done nicely and our clothes need to match. She laughed and said, "Oh, okay Mommy. So you mean my hair needs to be in ONE ponytail because if it was in a ponytail on the side and a ponytail in the back it would look silly. But I would still be adorable. Because I'm so adorable."

We got into the exam room and I was helping her change into a gown. As I went to pull her skirt off, it was stuck, and I realized she had put some toys down the front of her skirt again like she's been doing lately in the absence of pockets. I started pulling toys out of her skirt and it was like watching clowns climb out of a clown car. There was a pig, a sheep, a dinosaur, a huge dragon, and the antenna from a remote control truck shoved down the front of her skirt. As I pulled each toy out, the medical assistant and I laughed harder and harder. The dragon was stuck on the stitching inside her skirt and ended up tearing a hole in the diaper she had on. I don't know how she could stand having all that stuff in there, especially while she was buckled into her carseat. After I had taken everything out and got her gown on her, she whispered, "Mommy, I brought them so that I wouldn't be bored." And then she gave me this Vanna White pose:
This is my Raya. This is the sweet, funny, adorable, charming little girl that I love with every part of my soul. It gets hard dealing with medical stuff day in and day out and not being able to control or fix it, but when this part of her comes out, I just canNOT help but be absolutely in love with her and have a whole renewed determination to keep plugging away and do the best I can to help her feel good and be the best Raya she can be. It may seem trite but I am so thankful for the ability to take pictures and videos like this that capture those endearing parts of her personality. They are what gets me through the really difficult days, which have been more frequent lately.

*sigh* well that was long but it's mostly so that I will have everything documented and remember things in 2 months when we go back. I hope things will start to get better, but I also realize that they could be a lot worse and I'm grateful that she's not doing any worse.


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