I'm feeling weary and frustrated tonight. Jonah's feeding issues are becoming worse, and things are starting to feel insurmountable. It's no secret that feedings are a struggle and that he only eats when he sleeps, but it's getting worse. I'm having to fight him even harder for his 9 am feeding, he'll barely eat three ounces for his 1 pm feeding, he typically won't eat again until 8 pm, and even then, it's SUCH a struggle. He only took two and a half ounces tonight before bed. And last night, he wouldn't eat at all overnight. He just screams and screams. And today was not the only bad day. It's been going more and more downhill. He only ate 15 ounces today.
I'm praying my heart out that something changes and fast. I do not want a g-tube, but I have to think about what's best for Jonah. I'm out of ideas. I have nothing left. All I know to do is pray.
I know many EB kids have g-tubes. But I also know that a g-tube means surgery. I know that a g-tube means yet another blistering sore on my child. I know that it is yet another site that will infect easily. And it scares me.
I'm tired of having to make these hard decisions. I'm tired of him (and me) having to struggle at every feeding. I'm tired of feeling scared that whatever doctor has to do this operation (if it comes to it) may not handle him right or might not take the right precautions. I'm afraid someone will mess up, and Jonah will pay the price.
I've been in tears tonight over all this. I'm out of ideas. I don't want advice. I don't want comparisons. Jonah just needs prayer. I feel that it's getting out of control rather quickly. We're going to watch what happens over the next week or so, and if things don't get better, we'll have to start talking to his doctors to discuss our options.
Maybe this sounds rash to some of you, but the problem with EB is that once a child falls behind in weight/nutrition, it's almost impossible to get him caught up. So how far do you let it go? The key to EB is nutrition. And unfortunately, the key to nutrition is the g-tube.
Please pray for Jonah. I keep begging God to let him be able to eat. I can't believe that I'm having to pray for that. I'm having to ask God that my child be able to eat... who should have to pray that? I'm just so tired. I've tried everything. I don't know what else to do.