So we were excited to start Noah's new feeding routine in which we would start feeding through the stomach both continuous at night and 3 boluses during the day. The bolus feeds went really well. We will let Noah eat first and then when he is done we give him the bolus and he gets that "full" feeling. So far, we have not seen an increase in appetite, but it's still pretty new. The night feeds on the other hand are a whole different story. The first night we started it, we would hear his pump beeping every two hours with the error message "clog in line". For whatever reason the food was not going into his stomach fast enough. Finally the pressure would build up enough that the connection would blow loose and we would find Noah in his "waterbed" again. We have taped the connection, adjusted the tube, ran a million flushes, and everything else we can think of. When we bolus him during the day, I just attach a syringe to his tube and let the formula flow in by gravity. We noticed though that we would have to push it in with the plunger and it would never go in by itself. We called clinic yesterday hoping it was some mechanical issue that we would fix. We played with the balloon, deflating and inflating and still the same results. Then the J portion of the tube starting doing the same thing as the G on continuous feeds. Finally today the clinic nurses decided that the tube is either clogged, defective, or not in the right position and it would have to come out. We were pretty bummed at the thought because the g-j tube has to be replaced in the operating room under general anesthesia. However after discussing it with the surgeon they agreed that as long as he tolerates his feeds into the stomach with no retching or leaking we can put in the g-button! Yay!! So, we put on our Dr hats and removed the g-j tube here at home and replaced it with the g-button. Man o Man have I missed the ease of the button over the tube that we had to tape down to his stomach. So, here is hoping that this works and that we are back on track. If he stops tolerating the g-tube feeds or begins to leak, it's back to the OR we go.
We went to the pediatrician today for Noah's flu shot and got the unfortunate news that he was not approved for Synagis this year. These means no protection against RSV this winter. A simple cold for us can be RSV for him so we are going to try and be extra careful. Zane had his flu shot on Friday as well. We also go the script for outpatient physical therapy so I will start making calls this week and get him going on that.
Thanks for checking in on us and have a great week!