Alex has remained at 25% formula at 10 cc's an hour through his G tube. He is struggling with stomach pain and cannot sleep.
I have had a few people ask so I am going to clarify....For the past 8 months Alex has had a G-J tube that we fed through the J portion directly into his intestines. he was doing wonderfully until he got pancreatitis. The only problem we experienced was keeping the tube in place. Every time we placed one the J portion would coil back up into his stomach within 2 weeks. The decision was made at that point that once Alex's pancreatic enzymes were down we would sugically place a "separate" J tube so Alex would have 2 buttons. When we came in for this admission it was to place that tube. When the surgeons, GI doctors and Dr. Koenig met the surgeons refused to do a J tube at this point. They wanted to try the pyloroplasty (larger opening between stomach and intestines) first. So we did that, but Alex's motility is so poor in his stomach he is still not getting anything through. We have also "vented" Alex's gtube for the last 6 months meaning we wopuld hook him up to a bag where bila and air could escape. They are not allowing Alex to vent anymore because they are trying to "force" everything down. This is leading to Alex's discomfort. I have fought, cried, begged and pleaded for them to place another j tube even if it is another G/J and we stitch it in place. At this point they are not hearing me. They want to give it more time. I am anxious for Tuesday when another GI doctor comes onto service. He has worked with me in the past and trusts my "gut instinct". He is the doctor who helped me ensure Alex's gallbladder would be removed. I am hoping he will hear me and try to reason with the rest of the team.
On a positive note, we have not fully tested it yet, but so far Alex's pancreas is doing good. This is a true blessing. We are hoping it continues to stay strong.
Please continue praying for Alex and me. My exhaustion level is at a very high level right now since Alex is not sleeping well.