Update: Okay, nevermind about the Reglan.
This will be quick but I just wanted to let you know we are still here and doing okay.
Yesterday (Thursday) was my birthday, so Matt took me out tonight to dinner and a show. I knew he had something planned, but he kept it all a surprise. We ate at Sweet Potatoes (so amazingly tasty) in downtown Winston and then went to the Alliance Theatre and saw "Christmas My Way," a Frank Sinatra Christmas musical. Kathryn and her mom kept Jonah so we could go. It was all very fun, and it was great to have an evening out. Did I mention the food was delicious? Because it definitely was. I'm so thankful to Matt for taking the initiative to plan it all. It was exactly what I needed. He said something like, "I know you like experiences more than possessions," and he's exactly right. I'd so much rather have a memory than a thing. It was wonderful.
The evening was just a little bit tainted though because I am really worried about Jonah. He had barely been gushing at all (we were going about ten days between and then having maybe one bad day), and since last Friday, he has gushed (three to four ounces at a time) six of the last eight days. Up until today I thought we were just doing our normal acid reflux stuff, but today he had huge gushers five times. One with every feeding. I bet he puked at least ten ounces today. A couple of times it was tinged with blood. I called Geri, the DebRA nurse educator, and she said that all the gushing has probably caused blistering in his esophagus, and that the blood is just one of those blisters having drained. She says as long as it's just lightly tinged, the blood is nothing to be panicked about.
More than anything, I just don't understand why it's so bad all of a sudden. It seems like if it was the milk protein allergy or lactose intolerance, he would have started this weeks ago when we changed his formula. He has been great for weeks! We're not doing anything differently. And obviously all the throwing up is damaging his poor throat. And I guess the worst part is I just don't know what to do about it. I mean, do I go to his regular pediatrician or GI doctor for lots of tests and stuff when ANY procedure is very complicated and hard on him? Can they even do anything about it, especially if it's EB related? How long do I wait before I pursue medical help? I get so frustrated that I just don't know what's serious or what's regular baby stuff... or that even if it is "normal," it is much more serious for him than for a "normal" baby. I get angry that so little is known about this disorder, it just feels like a guessing game. Ugh. It just seems like every time we have a breakthrough (eating so much better), the bottom has to fall out.
Why is it so bad now? He doesn't act sick or like he's in any pain, except when he's actually throwing up. Afterwards, he's laughing and smiling and can usually take the rest of his bottle once it's over. Obviously he's gained weight pretty well, even when he was gushing regularly, so that's not even what I'm really worried about. I guess I'm just worried that something bad is causing this... something more than the normal stuff, it seems to be getting progressively worse, and now the blood thing, so I know it's doing damage.
Grrr. I'm just so frustrated. I don't know what to do. I guess I'll call whatever doctor is in the office in the morning, but I have no idea if there's anything they can do. I thought I'd ask about the Reglan, since several of you have mentioned it. He's on a high dose of Prevacid, but I've been told that doesn't help with the throwing up, it just helps it not hurt so much. Maybe Reglan would help him keep it down?
Please pray that Jonah will feel better soon, and that it will be clear to us that this is a "ride it out" sort of thing or a "we need to pursue this" sort of thing.
I'm sorry this post is such a stark contrast to the previous one. I don't have any less faith or thankfulness today than I did on Wednesday when I wrote that post. But I am worried and do feel more helpless (helpless not hopeless) today. I just don't know how to help him.
