So today we had a telemed appointment with Addysons gi motility dr. He had us concerned because he called two days ago and said we needed to meet to discuss her lab work. We had not yet see her lab results so we were unsure of what we needed to discuss.
Anyway ….turns out he’s happy with her lab work. She’s hydrated appropriately finally for her having autonomic dysfunction. He is happy that her specific gravity is improving. We know that she needs more hydration and sodium than the average person but for her we have finally found her “needed amount”. Fingers crossed that her upcoming Tilt table test continues to show improvement (even from three weeks ago). We are now trying to see if we can hold “stable” for six months.
They need to see that she can maintain stable. Up until now we were trying to reach “stable” or “normal for what her body needs.” We need to see if we can keep her ostomy function normal!
So sometimes when we think we are making no progress it turns out we were slowly making strides. We were getting to where we need to be.
We see AADP in just two weeks (hopefully they feel the same way) and then we see another specialist in February.
Until those appointments we will keep us with the regular weekly appointments she has.
Beaming with hope 