Day 509 - Long Awaited GI Appointment

Monday, May 23rd, 2022

We finally had our GI appointment in the afternoon. James had his GJ replaced on April 23rd, one month ago in Jacksonville. Mom had called the GI office back in Tampa several times but could never get a hold of the doctor. Every single time we would call the office they would say that they left a message for the doctor and he would call back. The point of having the doctor call us back was because we needed a follow-up appointment after having the wrong sized button placed. We have been adding more water to his balloon up to 6 ml as well as two 4x4 gauzes to prevent leaking. Unfortunately the stoma that we have worked so hard at keeping perfect condition is now red and sore from gastric juice leaking as well as James pulling at it.

Overall the GI doctor and his office could not explain for the lack of communication and nonresponse. The doctor decided to leave the 1.5cm tract length button in and not to go through with another procedure for a 1.2cm button. When we are talking about tract length we are referring to the length of the tube's stem or the stoma length. His hopes is that James will grow into it.

Currently James is still on continuous feeds at 38ml/hour. He is fed baby formula. Right now it is whatever brand we can find at the store. It's a really good thing he doesn't have a sensitive stomach. Months ago our GI doctor put an order in for new type of feed called Pediatric Compleat for tube feedings. To make a long story short between insurance and our DME supplier we still have not received it. We really would like to transition back to the G-tube so we discussed with the doctor about starting off doing one hour a day of his feed through his G-tube at 38ml/hour and the other 23 hours through his J-tube. Then slowly increasing the G feedings to several hours. Previously when we tried this we were doing a bolus feed at 95ml, and then tried 50ml. Both were just too much, too fast. So we are going to start slower and hopefully can make some progress!

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com