Xavier’s Fix

I am the grandma of Xavier the bravest little boy I know. Xavier was diagnosed with TEF/EA  which stands for tracheoesophageal fistuala and esophageal atresia when our daughter was 24 weeks pregnant with him. The day Xavier was born he was transported to Randall’s Children’s Hospital in critical condition. The following day Xavier had surgery to hopefully repair what was wrong. This condition has proven to be very difficult for Xavier and the family. Many trips to Randalls for emergency surgery to remove food stuck, and esophageal stretches to try to resolve the issues  done just in the past 3 years of his life. 

Continuation of Xavier’s fix...Just as a little back story reminder...Keira and Xavier returned again to Boston in November at which time all of Xavier’s testing was  completed, incisional therapy and esophageal dilation was also completed. Keira and Xavier were able to return home a few days before Christmas. The time spent back home since was to determine as to weather or not any of the treatments would take full affect and see if Xavier would be able to eat without any issues. As of now Xavier has since begun to lose weight again, still not eating well enough to keep himself off of feeds via ngtube. At this point one known next step will be to look at placement of a Gtube instead of the ngtube for longer term feeds. The rest of the plan for Xavier will hopefully be determined within the next week or two. Tentatively Keira will need to be in Boston with Xavier for 2 weeks maybe longer. The cost if Keira stay is unknown at the moment. Right now their stay is projected to be two weeks maybe longer not yet know either. Our family thanks each of you who are able to help prayers included.