Well well well! I dont know where to start....it was a crazy day...Buddys surgery was so long! She went in the OR around 2 and never came out till 5ish. Things have been crazy and very emotional...I just want her stomach to work! On the upper gi study it looks like there is a tight thick rubber band in the middle of her stomach and a notch its looks like there is also a twisted sliding board to get to her intestines.....it just isnt right and gi is so confused they never seen anything like that and this! Its just been one of those days! We have 3 options. Option 1. we can come in every week and take her g-tube out a suction her stomach and then put it back in) okay so anyway buddys stomach dont digest nor does anything pass her intestines food wise she does it stuff that melts in her mouth but very little of that eating or not eating doesnt bother her at all I always have her food at tried but things are getting worse as she gets older it just isnt fair. Its not like she eats tons she eats about a cup a day of stuff that melts that should be able to not cause bezoars...! Her doctor mentioned some surgeries but they are easy for normal kids but impossible for her! Here are the other 2 options- option 2 keep going in the OR every few weeks to get scoped- option 3- no more food at all only liquids.....these are all very sad and hard things please continue to pray as we try to figure these things out and come up with a plan Ill post a pic! Buddys sisters are being great sports as we are here it is very hard on Jocelyn and the family! We Love u all I just need to wrap my head around this day and hold and cuddle with my hero! We just keep swimming ~ our little motto
Posted on: Fri, 05 Dec 2014 01:27:12 +0000