Belinda is obviously dehydrated. Today at dance class she had to sit and watch the others. She texted me that she was exhausted, dizzy, and her vision was blurry. I had her tell her teacher and someone brought her a cup of hot water to drink. I heated a cup of broth and brought it up to her. She couldn’t get it down. She told me she maybe got a cup of water down all day, before the hot water.

I sent an email to her pediatrician asking for advice on what to do. We only have to make it 18 more days, but we’ve got to figure out something better.

I hadn’t been policing her too much because she seemed to be doing sort of okay. So now I’m going to try to get her back on the schedule she was on with the feeding tube, only with drinking the prescribed feeding tube nutritional liquid food she has left over from those days. It says vanilla and she says it tastes like the milk left over after you eat Lucky Charms, which is unfortunate, but it has 350 calories per box. So I’m thinking we will start tomorrow with hot water and then follow it with room temperature nutritional liquid food. I told her we will do that by 9 am and then she needs to have another by noon. Then she can try some actual food if she wants. But at least I can get some calories and liquid in her before she gets something stuck in there.

That’s what I think happens. I think that opening is just so very small, and she eats something, and bits get stuck in there, and then nothing else can get through. Now, this isn’t a perfect theory because sometimes she drinks water in the morning and can’t get it down, but honestly, I’m just trying to do something.

I also looked up IV hydration infusions and that is crazy expensive, like $400 for one treatment. I found one place locally that says they take our insurance but I’m sure that’s not an easy process. However, maybe there’s a way we can do something like that? That’s why I emailed her pediatrician, to see if there is a way Belinda can get IV therapy of some kind to keep her healthier until the surgery.