Just a short update! I had appointments with GI and Nutrition this past Tuesday, and it's not great news---my weight's still steadily dropping.. So my GI dr. has to put in a nasojejunal feeding tube which will bypass my stomach and go directly into the small intestine. I'm not getting enough nutrition because my stomach isn't moving food well, and that's making all my symptoms worse. This NJ tube placement will be done in the OR on May 16th! It's kind of a big step, but I'm past a medication stand-point and I'm losing weight too fast. When I see the mito specialist June 17th, we'll see if he thinks I need a permanent feeding tube.
*54 DAYS!*
;)
I read this beautiful quote a while back from a small book that one of my friends let me borrow, and I wanted to share it with you. I hope it's an encouragement to you. :)
"If God had told me some time ago that He was about to make me as happy as I could be in this world, and then had told me that He should begin by crippling me in arm or limb, and removing me from all my usual sources of enjoyment, I should have thought it a very strange mode of accomplishing His purpose. And yet, how is His wisdom manifest even in this! For if you should see a man shut up in a closed room, idolizing a set of lamps and rejoicing in their light, and you wished to make him truly happy, you would begin by blowing out all his lamps; and then throw open the shutters to let in the light of heaven."
~Samuel Rutherford
I actually know some people on feeding tubes and they seem pretty happy with them. It seems by the time doctors are willing to put them in there is a massive quality of life upgrade you get after because of the difference it makes. Good luck.
ReplyDeleteThanks! We will see how it goes... :)
DeleteGod bless you, sweet girl!
ReplyDelete