We had to start pump feeds again after not using them for four months. I am just so tired of this cycling and the stress that it causes Justin. He has a gjbutton but now the jsite is back up in the stomach so will have to have button replaced tomorrow which he is not looking forward to. Right now we are to make him NPO also which is a fight and causing lots of fighting. I found it so much easier when he was younger to do this. Now all he wants to do is eat and will cry and fight until we give in. After he eats he feels worse and retches worse and then needs to be vented.

We are also having difficulties with school and him going. He needs to go back and will have special accomadations to help make is easier on him but he doesnt want to go. He is stressing so much over this and really anxious about going back. I hate making him go but know that he needs to be there. He missed 90 some days last year due to all the gi issues and we really cant do that again this year. He has missed so much school and misses big chunks of work and learning. I am just so fustrated and feel so helpless not being able to help him. Thanks for listening just needed to vent this.


Melanie

Lots of hugs to you both, Melanie and Justin! How old is he? I could see how tube feedings (and related appointments and illnesses) could become very difficult once these kids are school-aged.

Sorry to hear your guy is having a rough time now. Sam is only 9 months, but I have a feeling that we will be dealing with the tube feedings for a long time. I often wonder how he will do as he gets older.

(((HUGS))) Melanie! Is there something in particular that is making Justin not want to be at school? Did something happen or is the teacher nashy or unaccomodating?