Hi everyone - here is an update on my brave guy. Prepping was really hard yesterday but fortunately Dr was able to do procedure. Today had a little change of plans; but Max pulled through. One of the issues has been our inability to see all of his small & large intestines due to blockage & inflammation. Although he has been on some high doses of meds to help with that. Today the Dr used a different scope with a balloon and he was able to get through more areas and expand areas to see better. There are some areas that he did more biopsies of that may be of a concern. Those biopsies will rule out cancer as that would be a different course to take. On a good note the medicine max has been on has helped some of the inflammation & ulcers. He thinks he may be able to do the camera endoscopy (camera in a pill) and it will hopefully not get stuck as he was concerned before. We do have to get him back on medicine that we had stopped due to his Insurance not paying for it. We hope with todays pictures & information that Dr can try another appeal. Max has a rare syndrome that normally if someone gains weight it actually helps it; but with his Crohns disease his body is just not absorbing any nutrients. Dr feels surgery is needed on this area; but there is no one here or in Florida that can do it. The area is just too risky and since it is so rare it is seldom done. So we will wait until biopsies return next week and then proceed with making plans to go back to Boston as we did 3 years ago or another speciality hospital that will be able to do this. Drs will be working on the who and where in the next week. So a mixture of news today - he made it through 2 hours of exploratory surgery, today, some areas a little better, more areas of concern were able to be reached to biopsy and a plan to work on to remove the obstruction and find who will do it. So a little more waiting for answers and plans but we are getting pretty good at that. I truly cannot express my gratitude by the most overwhelming support of friends, family & some complete strangers who have reached out to help Max & me. Most of you know my work for so many years was to help others; so to be on this end of support & prayers is just so overwhelming & humbling. We all experience hard moments in life and all at times ask why?....I truly havent figured out the why this child has endured so much in such a short lifetime; but then maybe it is to remind us all to keep on being positive, smile as much as we can, & treasure every moment and most of all NEVER give up. So heres our plan: we are going to have the merriest Christmas and celebrate the courage & tremendous perseverance of my amazing kiddo. We will forever be thankful to everyone who has and is helping to allow us to survive the financial part and allow me to care for him. We will continue to update as we know more. Thank you all again for all the love, prayers, support & overall kindness that has been sent our way. Much love to all. xo Beth & Max
Posted on: Thu, 18 Dec 2014 19:58:55 +0000
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