I just wanted to let you know that I will be getting admitted the day after Christmas. I’m very thankful for my GI dr.—he’s working at the hospital and not in clinic all this week, but he arranged and coordinated everything so quickly! I’m not doing very well. The pro-motility drug I’ve been taking hasn’t helped at all, and it’s getting harder to tolerate oral intake. All my back muscles have been getting weaker and forming tight, painful knots to compensate—my physical therapist said it’s because my muscles aren’t receiving enough nutrition. I’ve had to sleep past 2 pm every day now because I’ve been so tired. All this and more is going on, and yet, I look so normal on the outside!
On top of all that, I still cough and gag all day and night. We wonder if my secretions are going down the wrong way and ending up in my lungs. I got the overnight oxygen testing completed last week, but we won’t get results at the moment because my sleep dr. is out of town these last two weeks of December.
We’re not sure how long I’ll be admitted. But I’ll keep you posted! Everything is up in the air regarding how long I’ll be on TPN (IV nutrition), etc.
I hope all of you have a blessed Christmas! I’m so thankful for you and your steadfast prayers.
P.S. I thought this was so neat! Last week, CNN wrote an article, and here is part of what they said: “We know parents whose children are in remission from cancer and others whose children have mitochondrial disease. Their dream present would be an end to childhood disease. Give to their causes if your family is lucky enough to be untouched by serious illness.”