Whitney had an N-J tube placed on December 22nd. We tried to place a g-tube but she kept vomiting and it would come out. So they wet all the way to the jejunum and put a bridle in to hold the tube in place In her nose.
While they were in there, they did an upper endoscopy and a contrast study. tHe doctors confirmed Whitney has Superior Mesenteric Artery syndrome. That's pretty darn rare. It has been causing the bowel problems Whitney has been having. It has caused he lack of hunger, and probably the crazy way she sits all curled up. That apparently takes away some of the pain from this syndrome.
So we all learned how to feed Whitney through a tube. She comes home from school and goes on the feedin pump at 4:30. She gets four bottles of pediasure each night for an extra 1440 calories a day. She grazes on a small amount of food during the day, probably to stave of the small amount of hunger she has.
We have had some great success! Whitney was in the 5th stanine below normal when we started. She has shot up in weight by 10 pounds as of last week! We are shooting for 80 pounds which will put her onto the "normal" chart,albeit at the bottom. She grew a bit taller too. We definitely need some new clothing. I actually bought some pajamas that I do t think I need to alter! That's a first.
So now on to the next stage...the nasal tube comes out Thursday. She will have surgery to put a g-j tube into her stomach, with the tube extending into her jejunum. We are planning to only be in overnight, then home to rest and learn to care for the stoma. She will have that for a wile and eventually we will move to a G-tube which will help her get off the pump feeds.
At the rate she is gaining, we will probably hit goal in 6-12 months. We definitely are pleased with the progress and are hopeful for getting past this and getting Whitney back to normal hunger patterns.
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