Day Two: Rocky start

Crazy AM: I woke up with the pleasant realization that I hadn't heard ZZ throwing up during the night. When I went to flush his tube I thought I must have been mistaken because his bed had quite a puddle in it. It concerned me that there was a tinge of blood in it and sure enough when I looked at the end of his tube there was his G-button still attached. It had come out in the night and fed his bed instead of him (thus no vomiting). We have the type of button (Mic-Kee) that I can replace myself and I had brought an extra but when I opened the package there was not any lubricant (his old G-button used to have one). This was my first time to replace it so I had to keep telling myself to calm down. I tried just wetting it with water but couldn't get it in. At this point I was worried also about the time it probably had been out. His feedings end around 5 am and obviously it had come out before it finished. I called the hotel lobby explaining my problem and to see if they sold any KY jelly in their little store They didn't but said they would print directions for the nearest pharmacy and have them at the desk. I was considering going to the closest ER as well, but decided I would call his pediatric surgeons office first. My favorite thing about his pediatric surgeon's office (Cooks Children) is that unlike any of his other Dr's offices, they answer their phone!!! The nurse told me the Dr's were all out that morning but that if I couldn't get the button in after getting the lubricant that I could come over and they would page the PA to come and dilate his opening. She said it starts closing off in 2 to 3 hours. Well, I tried again with the lubricant and couldn't get it so off to Fort Worth we went. In the meantime I left a message on M's phone at the feeding program that we wouldn't be in that morning. They were able to dilate the opening there at the pediatric surgeon's office and place ZZ's new button. All back together we made our way back across Dallas and got to OCH around 12:30. One of the other little boys in the program had fallen that morning and had a big goose egg on his forehead. We were off to a rocky start.

Therapy Sessions: Today all ZZ did was the 2 feeding sessions with the psychologist in the afternoon. The first feeding was water and went well although he was tired. I put him down for a nap in between the 2 sessions and he woke up very cranky. The second session didn't go well. She fed him goldfish from the spoon. He does like goldfish but usually just nibbles them and lets them dissolve in his mouth. She was having him chew them from the spoon and move along much faster than he normally does. He started putting his head on his tray and going to sleep. Yes, he had a long day but this was avoidance as well. She finally took off the tray and unfortunately he cried the rest of the time.

Comments: The program is a very structured behavior modification program. I was interested in watching how his afternoon feeding sessions went. As long as he was taking a "bite" when prompted, he could play with toys and the therapist was really animated and played along with him. When he refused or slowed down she kept a straight face and took away the toy. Periodically she would play with the toy a little to interest him and if he cooperated she went right back to her playful self. I can't quite imagine how this will work at home, but that I suppose I have 5 weeks to work that out!