Floundering. I like that word. Mostly because it's a kind of fish, and I like fish, but also because it's a pretty good description of how I feel about trying to deal with Raya's medical issues. In the last 4 1/2 years of tube feeding, I have become somewhat of an expert on feeding Raya. I have learned what to expect from her body and I've gotten pretty good at managing the day-to-day stuff. What I have not yet figured out how to do is align my expectations with reality. It's hard to do that when you have no idea what reality is going to be on a long-term basis.
How long do we continue to do the same things we've been doing? I have always hoped and believed that we will at some point be able to get Raya to a point where she can eat and drink enough to not need the tube anymore. What if that's not what her body is capable of though? And how long do we wait? At what point do we accept that tube feeding will be a long-term thing for her, and how long is long-term anyway?
*sigh* I just don't know what to think anymore. We do things for a while and may or may not see positive changes. Things stagnate so we try something new. Sometimes it makes me feel like we're making progress. In some ways, she's made huge progress. The most notable thing on that list is that she doesn't vomit a few times a day anymore. In the grand scheme of things though, we still have a child who does not eat more than a few calories a day (and usually zero), doesn't care if she ever eats or not, is allergic to a lot of difficult to avoid foods, can't tolerate more than a couple ounces per hour of food or formula in her stomach, and would starve to death pretty quickly without the feeding tube. (yeah, that's the harsh reality of it) How long will it be before things start to work better and/or she learns how to work around her body's physical limitations?
So I'm floundering. Do we bother with another round of out-of-state motility testing? When we did it before, I had such high hopes going into it and although I am glad we did the testing, the results did not give me what I wanted. Answers. What I got was someone telling me that her digestive system was functioning in "near-normal range". They said that even though her symptoms said otherwise, the test results said that her stomach worked fine and we should get her off the GJ tube and back to gastric feeds, which we did. They pretty much told us there was nothing they could do for us. Does that mean that we just keep managing the day-to-day stuff and hope for some day in the future when her digestive system will work better? Now that we're 3 1/2 years down the road and not really much better off, would it be worth the trouble, the expense, the time, and the physical and emotional exhaustion of traveling somewhere else in the country just to do some tests that might give us results that are as disappointing as the last ones? Or maybe this time around, things would be different. Now that we've seen her body at its best and then seen things go backwards to where we are now, do we have enough information to help a motility specialist better identify where her problems lie and maybe come up with new ideas of how to help her? I don't know. Even if we do motility testing and they do actually identify the location or source of her problems, what is there for anybody to do about it?
We thought we had a new place to go for motility testing, but now we've found out that the doctor we wanted to see is not accepting any new motility cases and is leaving his current location this fall. It's not the end of the world but it means that instead of a 6-8 hour drive or a 1 or 2 hour flight, we may have to hop a plane and fly clear to the east coast instead. Just thinking about it makes me tired.
Maybe I'm not doing enough praying and studying. Maybe I'm being too stubborn to see things differently. Maybe the timing isn't right, or maybe we're on the right track and we just need to be patient for a few more years. Usually I'm fine with the way things are, but right now I'm just having a hard time with not knowing what to expect in the long term. If this is as good as things will ever get for her, I can live with that, but if there's something that can be done to improve her quality of life, I would do it in a heartbeat. The problem is that I just don't know. Not only do I not know, but I have not even the slightest guess. I have hope that things will get better for her, and I believe that it's possible that she might someday be able to eat & drink enough on her own to not need to use her tube anymore, but I just want to know how to fix this for her. This is harder than cleaning up puke & poop. I just wish I could get some answers to my unanswered questions.
In the mean time, I will just keep doing what I can and counting my blessings that she is mine.
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