Well, we went to see Endocrinology as recommended by Neurology and Gastroenterology. The question? Why is Jen not maintaining weight? No answers to be found, again.
So that brings us to a heart wrenching decision - a feeding tube. You see, Jen had a feeding tube in 1999, when she had her surgery. With the surgery, they said she needed one, as she wouldn't be able to completely eat by mouth. Jen proved them all wrong, and a year later, after not using it, they removed it, with letting us know that one day she will need it again. We were o.k. with that, as believing removing it gave her more freedom, and less chance of infections with a foreign object in her body. She had been doing great, eating everything and anything we gave her, her love of food is her biggest passion. So we were able to give her 8 1/2 years without a tube. What an accomplishment! I should be happy it has been so long. Well, I am so sad about this, its all I am thinking about this week, can't get it off my mind. Somehow this just feels like a kick in the head to me. When I think logically, I know she needs it, but it also me makes me feel like I failed her. I know I haven't. I have searched for answers, goodness knows we have been to all the specialists possible, but poor Jen. She will still be able to eat all she wants, she has not lost that ability, thank goodness. It will be just for supplementing her needs.
So the next call is to the GI, to update him about this last appointment, and my discussion with the nutritionist, and I guess schedule a date. ughhh.....
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