Over the past month or so we've reached a plateau with Jonathan. We had been making steady progress, peaking at seven ounces four times a day only to settle far below that amount today. We've been struggling to avoid a day where one feeding doesn't come back up. On the days we've been successful, it's only because we've decreased the amount we've fed him at the end of the day. Right now and over the past few weeks he's plateaued at 16.5 pounds. To even be in the fifth percentile, he'd have to weigh a little over 20 pounds, or about 25% more. We're probably only averaging caloric intake in the 600s when the doctor is wanting it in the 800s or 900s.
I'll say it again for those of you don't remember: To the best of our knowledge, Jonathan is suffering from a condition called gastroparesis. His stomach is not able to empty fast enough to keep up with the demands of his body. Naturally, he's not growing since the bottleneck is restricting his intake of calories. Imagine your body needing food but not getting it. Based on the tests and studies that were done, everything looks fine. That's the frustrating part, because everything is not fine. What's probably happening is that the part of the nervous system that helps push food through isn't firing properly.
What this means is that we have to hold him four times a day, roughly 45 minutes at a time while the pump puts food in his stomach. We have a kid carrier, but even so this process takes up hours of the day. We can't exactly tell how full he is at any one time, so if we pump too much into him he'll just throw up and we'll lose everything. If we go the conservative route so he holds it down, he's getting some but not enough. This isn't exactly what we had in mind for our life. Our hope is that this is something that isn't severe and that can be managed as he grows older. Either way we're slowly starting to realize that we may have a "special needs" child on our hands. I'm not sure people realize how much of a burden it is, having to spend 3-4 hours of your day just to feed your child only for it to probably end up all over your clothes or your house. That alone isn't a big deal, but add to that a three year old girl, a house that needs to be taken care of, both of us are soon to be working (we don't have a choice right now), and life is pretty much all about work and no play.
We've tried our best, but we're at a point now where this is no longer good enough. Something has to change, whether it be an additional surgery, different medication (few to choose from), a different type of food, etc. A simple follow up appointment with the gastroenterologist this week isn't going to cut it. We're going to have to schedule a time to sit down and ask questions, discuss options, and figure out the next steps. We may need to seek a second opinion in Denver. There is so much we don't know.
We are probably going to push for additional and duplicate tests, just to confirm that the results in the hospital are still valid. What isn't adding up is that he's supposed to be normal and his emptying time barely normal. If that really were the case, then he should also be able to eat/digest the normal amount of calories required for a child his size. Because he can't, either the test ranges for normal are off or he really isn't normal. Even if we do confirm what we're experiencing (an abnormal test result), what exactly are the options? In some ways I almost hope the results from a second test come back abnormal, just to prove what we're experiencing. Also, that might alleviate certain goals or change the treatment strategy altogether.
At this point we feel like another quick visit to the doctor resulting in a new "target number" isn't what Jonathan or we need. We're really at a point where we have gotten him this far (kept him going) but something needs to change. Based on what we now know, we can't just continue the same old drill and not do something different. I just don't think this is working anymore. We need to take it to the next level, for Jonathan's and our sake both.