Well, here we are, still sitting at the hospital :( But today has been a better day.
Shortly after I posted yesterday's update of Matthew vomiting, I happily called the nurse and said; okay, lets pull the button. Get me the kit, I can do it. She was surprised by my words and didn't think that was part of the plan. So she paged the resident and he confirmed that he did not think that was part of the plan. So then they paged the hospitalist; and she too, said that we couldn't pull the tube and replace it with just the plain g-tube. I kinda lost my mind for a bit. We had expressively talked about removing the g/j and placing the g-tube. Why would I want to do that, you ask? Well, from what I understood from the GI doctor in the past is that when the j portion enters the small intestines from the stomach, that the tube can actually sometimes act as a"cork" in the lower sphincter of the stomach. When that happens, if you use the g-tube to administer food, then it cannot fully empty into the small intestine, this in turn causing the stomach to fill until he vomits.
So after the resident himself came and talked to me and I threatened to remove the tube myself after I got our spare g-tube from home (I know, not one of my finer moments), he convinced me to just wait until tomorrow morning. I told him I would think about waiting; but not to be surprised if I went ahead and did it. Well, thankfully for all involved, I calmed myself a bit; and then Steve and the kids came up and visited Matthew, and we all went out for supper. Before we left, we tried feeding him formula in the g tube, but he just vomited. So off went the feeds (I've lost track how many times we've done this) for the night.
I'm sure that my threats were heard about by all involved, and I believe Matthew was probably the first patient seen this morning. No one wanted me to pull the tube out, and I found it just a tad funny (in a sick sort of way) that if you start being the difficult parent you get all kinds of attention.
GI rounded early today and made their recommendations, and shortly after the hospitalists rounded. The doctor asked me when the last time Matthew had pooped. When I replied Saturday; she informed me that the x-ray they had done Saturday night showed lots of stool in the bowels, and also some barium. Barium is a liquid that shows up on x-ray; it is used in some procedures. She asked when he had had barium. Well the barium had been given last Monday for a test they had done. It was STILL in there!! Holy crap(pun intended), Batman; that can't be good!!
Then the lightbulb went off. If little was coming out of Matthew, and we kept putting more in; eventually his body would scream enough. The doctor likened it to if you eat a large meal, and then would try and eat again, you would eventually get sick to your stomach. She thinks this is what was happening. She ordered 2 enemas for Matthew, and after that to be put back on a regimen of Miralax. We would give the enema's and then start his food ever so slowly. We would gently introduce food back into his body and see what happens.
The first enema had astounding results, to say the least, and the second this evening was quite productive too. Food was started at 5cc's and hour and ran that way for 8 hours. At 10 pm tonight, the nurses started bumping his feeding by 5 cc's an hour until we get to 55 cc's/ hr; which will be morning. We will see how he tolerates this. So far, so good.
GI rounded again this evening, and rained on my parade. I was so excited that this could potentially be a simple fix. When asked what he thought, he told me, that he didn't think that was the problem. When I asked him what he thought was the problem he said he didn't know. I next asked him what he thought we could do to fix it, and he said "nothing". When I inquired about a fundoplication (as talked about by the GI on call yesterday) he said, that he would not recommend it for Matthew. It would fix the reflux, but not the retching. And with all the retching Matthew does he says it would ruin the fundoplication quickly. I asked him if he'd given up on helping him, and he was silent. He said that we'll just have to wait and see what Matthew does.
So we have immediately started "operation: prove GI doctor wrong". Everyone else we've talked to (every nurse, all the residents, the hospitalist who discovered this in the first place) seem to think that this is the obvious answer, and can't believe we overlooked it for so long. The hospitalist on this morning was fresh to the case, and believes that sometimes it just takes a fresh set of eyes to look things over and see if something easy was missed.
So all in all, I am glad I didn't pull the tube. Feeds are going well so far. We are praying they continue; because Matthew needs to get out the hospital and be home. His mother also needs to get out, before she makes a fool of herself anymore :)
Oh and one more nice thing that happened today:
They changed Matthew out to a "big boy" bed, so he and I could snuggle. We did and actually caught a pretty good nap together. Ah, the therapy that is done with some good snuggle time :) It heals what ails you.