Yesterday I took Nathan to his doctor for a check up. He threw up at school so they sent him home, and he did look a little bit pale and out of it. The doctor couldn’t figure out why he was throwing up, but we took the opportunity to talk about his overall health and how to give him the best possible care.

Her first recommendation was to see a GI doctor about getting him on a G-tube. She feels this is the right time for us to take this step. Of course she recommended supplementing the tube with oral feedings, where we’d feed him his main meal orally and then liquids through the tube. I am not a big fan of this idea but I agreed to see a GI doctor to discuss.

Next we talked about his diet. We went back to some old test results where Nathan showed IgE allergies to dairy, wheat and egg whites. After his hospitalization last year I got so scared about his weight that I decided I’d rather feed him bad foods but have him gain weight, than for his body to be so malnourished that he can’t fight off illnesses. He is not a big fan of GFCF foods so he wasn’t eating too much, so that’s why I made that decision back then.

Now here we are, a year later, and honestly he’s been in worse shape eating dairy and wheat. He is still just as thin, still not eating very much, but he’s been way sicker this year than last year. So it’s time to go back to healthy eating.

As of next Monday our whole house will be gluten casein free. I am sure Izzy will benefit from this too, as she has chronic diarrhea.

Doc is also going to do some immune system testing, as well as more allergy testing and in depth bloodwork to see if we can figure out what else is going on with Nathan. However, the current theory is that he is micro-aspirating fluids and saliva into his lungs, and since there are many bacteria in the mouth, when they go into the lungs, they immediately cause inflammation and infection in the lungs. The problem is that a G-tube won’t help with aspiration of saliva, so even though it would help in some ways, it wouldn’t help in others and could cause other problems, such as infection and gas etc.

It’s kind of a complicated thing. So far we’ve avoided the “medical” approach and Nathan has mostly done well. It’s scary to think about opening the door to the “medical” world as it’s such a series of negotiations. You pay something to gain something.

So we will take it slow. For now, all we are doing is improving his diet, and seeing a GI doctor. Then the rest will unfold.

He is home, and so happy to be in his own bed!

He recovered well from the croup, his breathing is significantly improved, and his color and appetite are back

The swallow study was a failure. He is aspirating all liquids, but does okay with thicker textures like banana. They recommended intensive feeding therapy and some more G tube conversations. Bah humbug. For now, all I’m going to worry about is his full recovery. I’ll deal with the rest later.