Jul 1, 2014

It’s so great to be home!  We got back from California this past Friday.

On Saturday, I had an unwelcome coming-home present. 😉  The on-call GI dr. told me to go to the ER yet again because I was (and still am) dealing with esophagus pain and wasn’t tolerating NJ tube feeds well.  He wanted to remove the tube as soon as possible (even though I had a follow-up with my main GI dr. today) and do another endoscopy.  Some small ulcers were found in my small intestine caused by the feeding tube.  I’m glad the tube is out because my GI tract was starting to get irritated.

My GI appointment today went well.  Dr. P is going to consult with an OHSU general surgeon (Another top dr. voted by Portland Monthly. 🙂  I continually thank God for blessing me with such a wonderful team of specialists!).  Lord willing, this surgeon will be placing a jejunostomy feeding tube directly through my small intestine.  Not sure when yet, but Dr. P wants it done soon so that I don’t drop to 70 lbs.

Dr. P also removed the muscle biopsy sutures in my leg.  The surgical area still hurts a lot—I’m glad I see my physical therapist this Wednesday.  I won’t get biopsy results for at least 2 months (and probably longer since I don’t see the mito specialist again until November).  On June 20th, the dr. removed 4 chunks of muscle and sent them to different labs across the country.  It was really painful having to be completely awake for the surgery.  Hopefully I’ll never need another one!

Post written byKerissa

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