Oh my goodness... I am BEYOND frustrated.
We spent four hours in the ER today. After a step backward today on the eating front, I called the pediatrician. She directed us to the ER to get IV fluids for Jonah. So after getting to the ER, we were assigned a bed and a curtain and we spent four hours, got seen by about three sets of doctors, all for them to decide he didn't need IV fluids after all. I think they might would have done it just as a precaution if he had been a "normal" kid, but didn't want to do an IV unless it was absolutely necessary given his fragile skin. Of course once we were there he drank four ounces of Pedialyte and three ounces of formula. AND he had a wet diaper. Don't get me wrong. I'm thankful he didn't have to get an IV, but geez, it was a long afternoon. The one good thing about today is that now, if we have to go back again, we will be directly admitted to the pediatric floor and won't have to go through the ER again. So things will be faster moving (and hopefully less germy) if we find ourselves in this boat later (ahem, tomorrow).
And then we got home and he only ate an ounce before bedtime. Grrrr. He only ate 6.5 ounces of Pedialyte and 9.5 ounces of formula. But so far he's still crying tears and peeing at least every six hours. I don't know how long this not eating can go on before we have to take additional steps though. He's losing weight, and he's getting more blisters and not healing as well as usual.
I feel like we HAVE to have a backup for when he gets sick. It's not fair to force feed him (and it's impossible) and it's too much weight on my shoulders. I don't feel like I can do it anymore, selfish or not. It's too much pressure, and I feel like it's just making his aversion to eating even worse.
If they had said, "We should do a g-tube today," I would have said, "Go to it." We're thinking, talking, and planning (just in case), but I am so over all this. If this is what happens when he has a little cold, what's going to happen when he gets a two week flu bug or something like that? I don't feel like it's safe to not have a backup for when he doesn't want to eat. Hydration and nutrition are just too important.
But I'm sure I'm talking too early. Who knows what will happen over the course of the next few days? I just want it to be really clear. I can't take this daily (hourly) back and forth, and neither can he. I want him to eat when he wants and when it's fun but to still get the calories and nutrition he needs. I don't know what the answer is. Everything with EB seems to be lose/lose.