Last night we were given a clue. Jonathan had kept the food drip (NG tube) down all day and all night until 5:30 in the morning. Since he slept on me all night in the backpack (where he feels the most safe), this was my wake up call. I only slept about three to four hours last night to ensure he was able to sleep, so really I was awake when it happened. I don't think that makes it any better or worse though.
The clue given was clinging to my shirt, pants, and on the couch where we had slept. The night before at about 6:30 p.m. I had shared a few bites of a french fry. He probably only ate one entire fry, but it all came back up almost 11 hours after eating it...and it looked the same as it did when I gave it to him. I'm no expert, but 11 hours is way too long for a starch to be sitting in your stomach.
During this process we've talked about a motility disorder, or in simple terms, a delayed emptying of the stomach. For various reasons the outflow is extremely slow, resulting in many of the things we've observed with Jonathan. His body wants food, but he can't eat enough (or doesn't want to eat enough) because he stomach is full all the time. This can contribute to reflux, vomiting, and failure to thrive. Basically, he can't pump enough food through his stomach to meet what his body requires. This would explain why he always seemed hungry but would never eat, why he's small, why he would only eat a small amount at a time, and why he keeps vomiting at night with a constant drip (even as slow as what we've been doing). It would also explain why he tolerated us force-feeding him formula for a week or so until he started vomiting that too. Towards the end, the vomiting just increased in frequency. His system just wasn't keeping up.
After I consulted the veterinarian who brought this up as a possibility, our gastroenterologist came in and basically said the same thing. However, first thing was first, and he was concerned that Jonathan had essentially gone without vomiting (and we assume serious calories due to the vomiting and potential motility issues) for about a week now. Today we pulled out his NG tube and they threaded in a weighted tube that would bypass his stomach to get the nutrients lower down the GI tract. If the stomach wasn't going to cooperate, then we'd just have to bypass it for the time being. Towards the end of the day after getting that "drip" started you could tell he felt much better. The doctor also prescribed and had administered Reglan (Metoclopramide) to help with some of the symptoms (e.g. vomiting, minor reflux) we're assuming are associated with his slow stomach emptying.
One of the difficulties is that we still aren't sure what's causing his elevated liver count, suggesting there might still be an infection or virus present. We are limited in making any concrete conclusions about his GI tract because right now you could add on the phrase, "or, he's just still sick" to the end. All the test have come back negative so far but we haven't received the results of the mononucleosis and one other test yet. I think we are doing a balancing act of trying to have him keep food down so he'll recover yet not give him too much to cause all of our progress to be lost in one vomit session. I think the doctor is addressing the nutrition needs by going directly to the intestine, addressing the symptoms and slow stomach emptying now by also bypassing the stomach but giving him the drugs as well, attempting to figure out what's going on (if anything) with the liver via blood and urine work, and looking as much as possible at the structure of his GI tract to rule out any major issues.
Because of that, we're going to have an ultrasound done tomorrow. I think they should be able to tell a lot about the liver and size/structure of his GI tract to see if there is anything going on that might explain this. I don't think the doctor wants to run any stomach emptying tests until he rules out the structure issues and until we appear to get over whatever is causing the elevated liver count. We'll need more blood drawn to monitor his progress, which is another issue we're dealing with. They are having trouble finding good veins in Jonathan and if this turns into a long process, do not want to stick him multiple times to get blood. They may do a what they call a main line tomorrow - an IV/blood draw combo in one. I believe it goes into the artery under the arm and hangs right above the heart, but the advantages are that it's a one-time deal where they can repeatedly draw blood and give the IV. For some reason that seems a little scary to me, I don't know why.
Jonathan is taking this well, even though we can tell it's been extremely hard on him. He is such a sweetheart and only wants to be held by Dad or Mom...where he feels safe. That's why I've been sleeping with him, because it's comforting. I can tell he realizes nothing bad happens when Dad or Mom are holding him. Last night I decided that I just want him to come home and be the same little guy he was before he got sick, at least in terms of his playfulness and personality. Last night, when a nurse came in our room to do a simple blood pressure check, I had to lay him on the bed. He cried and cried until I was able to go back to the other side and give him a hug while he was laying on his back. He just latched on to me, gave me a big hug and wouldn't let go, and stopped crying the moment I "covered" him with myself. The procedure was completely painless of course, but the story just illustrates how worn out he really is. Most of the things he's had done really don't physically hurt that much, I think it's just scary for him...and that's what makes it hard for us. He doesn't know if someone is just coming in to listen to his heart or to poke him with a needle.
To end on a happy note, here's a really cute video from the first day in the hospital. Jonathan had somehow gained a burst of energy, which really didn't last much longer then the length of this video.