So Jorge has an esophagram (barium swallow) done a months ago, and we finally got news from the doctors last week. We were told it looks so good, that if had been eating by mouth for more than three months we could take out the tube. When we did the math, it had been more than that, actually almost four months, so we finally took that step and got rid of the g tube!
He still does not eat with a huge appetite, he fights some times, or most of the time I must say, but regardless of this, he drinks four eight ounce bottles a day, and about 16 oz of water as well all by the mouth. We decided to do this, because we realized, that Jorge us just confused, and he thinks the proper way to eat is through the tube, and even though he has been doing it quite well by mouth, every day, he would ask to get his feeds via tube.
The doctor told us exactly how to do it, we gave him his last feed on Wednesday April 25th, at around 9 p.m.. We waited two hours so that the food would be already digested, and for him to be asleep. We grabbed a syringe, took all the fluid out of the tube and pull it out. Then we grabbed some gauze's, a lot I have to say, and covered the hole where the tube was, and went to bed. The next morning it seemed to have healed a bit, so when I sat Jorge on his high chair and started feeding, I realized the food was coming out through the little hole, it was just terrifying, so I decided to call his doctors in Boston almost having a panic attack, to hear this was completely normal, and that it would take at least 48 hours to get better. It has gotten better ever since, but we still have little leaks, so after he is done eating, we will lay him down flat on his back for about 10 minutes and voila!!! Leaks no more!
He still refuses to eat solids, so we are trying to figure out what our next step will be. We also got a bit of bad news. He will need surgery again for his craneosynostosis repair. The sutures did not close properly and we were told he has a gap between them in the skull. It sounds much worse that it is according to his doctor, I am not convinces yet that it is not so bad, but we have learned through the years that it is always better than what it looks like, so again we hope and trust God that he will have another wonderful doctor perform surgery on him, and that the outcome will be very very favorable!!!!!
