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Slowly moving forward

We are coming up on 2 weeks of Raya having her GJ tube, and she is definitely making progress in some areas. First and foremost, she is back to her normal sleep schedule, meaning she is responding appropriately to her sleep meds again. HUGE sigh of relief there. I am happy/comfortable with the med we've been using and really didn't want to make any changes there, so I'm relieved that we don't have to now.

She is making some progress with her GI issues too. She seems to be more comfortable overall. It's kind of hard to explain how I know that, but I'll try. Raya does not express pain or discomfort verbally most of the time. It is rare for her to do that unless she's really feeling awful and I ask her several times and rephrase the question multiple ways. During the day, if she isn't feeling well, she gets more and more alert and hyperactive. Her highs are really high and she has a lot of ups & downs in her activity level and mood. She is unable to hold still for more than a couple of seconds (no exaggeration) and you can tell her mind is going a hundred miles a minute. You can ask her to do 2 or 3 things in sequence and she will get distracted, sometimes before she even does the first thing, and will forget everything else she was asked to do. In the weeks leading up to when we changed her to the GJ, all of this got worse and worse. The times when we were having trouble with her feeding pump not running as fast as it was programmed to run (especially the day it ran for 7 hours with the tube clamped & didn't feed her at all), she was noticeably calmer and happier. It has always been that way for her, which is why I don't believe that a hunger-based tube wean will ever work for her. You can go for an entire day without feeding her at all and she couldn't care less.

If we tried to increase her feed rate above 75, it seemed like it was going okay at first and then we would realize that her body was overwhelmed by the increase and the only way she was able to express that was through her restlessness, increased activity level, and moodiness. I think a good way to describe it is like having ants in her pants. She was constantly moving because if she slowed down, she could feel the discomfort in her gut. When I was pregnant with Piper, there were nights when I could not sleep because my digestive tract felt tickly. If I held still, it tickled. The only way I could stop feeling the tickly feeling was to move. I imagine it is a similar feeling to restless leg syndrome, but in your gut instead of your legs. It was aggravating, to say the least. I imagine that might be why she is the way she is when she's not feeling well.


In the last few days since she started sleeping again, she is just more calm overall. We have slowly been increasing her feed rate, and she is already up to 90ml/hour with no ill effects from it. That has decreased her time on the pump from almost 17 hours a day to just under 14 hours. 3 hours may not seem like all that much but it's HUGE for a very busy 4 year old who likes to do somersaults and dance without a backpack weighing her down. It's hard to describe the change in her demeanor, but it is a positive change and I am confident that switching her back to a GJ tube was a good thing for her. As her respite provider put it today, her highs are not as high and she's just more even-keeled. She's not as up and down as she had been before. It's more like 5-5:30 in the evening when I find myself subconsciously counting down until bedtime instead of 4:00. (ha ha) She is still a very busy girl with a very, very short attention span, but I just feel like she is more comfortable now and is feeling better in general.

Based on Raya's first experience with switching to a GJ, I assumed that it would take her body some time to adjust to being fed so differently. Instead of entering her digestive tract at her stomach, her formula is now entering somewhere in the neighborhood of 30-45cm below her stomach in her jejunum. That takes some adjusting, for sure. I also assumed that she would need some time and some help in recognizing the difference between bad stomach pain and the feelings of intense hunger. Sometimes I have trouble distinguishing between those feelings, so I can only try to imagine how confusing and difficult it would be for a 4 year old child who has never in her life had much normalcy in the way of eating/food/digestion to try and understand. It is going to take us some time to work with her and teach her to figure out what her body is trying to tell her. It will be another mountain for her to climb but I think she is going to do well with it. IF her stomach cooperates. That's the big "if". Gastroparesis/dysmotility really stinks.

I had hoped that she'd be eating more food by now, but like I said, she has a lot to learn still about how eating food helps the pain of intense hunger go away. She is asking for food again, and she has been eating a pretty decent amount of refried beans at a time (as much as 3-4 tablespoons) but she usually just takes a bite or two and then doesn't want anymore. She tells me that it's hard to swallow things, and after a couple of bites, she says her stomach is starting to feel full. It's hard for me to know how to interpret all of what she's telling me, but we're working on it. For now, we're just focusing on the positives, like the fact that when school starts in a couple weeks, she'll be able to go to school without her backpack on. I am SO excited about that and I'm sure that her teacher & the health aide will be too. I think it will be a lot less stressful for them that way.

On another note, so far, I really like the AMT G-Jet. We had the MIC-KEY GJ for about 10 months, and there is a lot that I prefer about the G-Jet so far. That is another post for another day though. :)

So there's the first post-GJ update on how things are going since the switch. Hopefully things will continue to move in the right direction for us.

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