We have had an exciting and stressful past few days. Most of you know Ben had his feeding tube placed on Thursday. He did pretty well. The surgery went great. He had a bit of trouble with his first few feedings but, we figured it out. We have gotten the hang of it now. He gets three 133 cc feeds over 30 minutes 3 times a day. At night, he gets a 320 cc feed over an 8 hour period. He is almost back to his old self. There are a few things he has tried to do that he couldn't- like jumping and bending all the way over. Other than that, he has adjusted quite well. He is still very insecure about it though. I had planned on posting pictures but he will not let me take a picture where you can see his button. He doesn't want to show it to anyone. Even in the hospital, he kept the covers pulled up to his chin. Maybe later...
The plan for right now is just to continue what we are doing now. We go back in two weeks so the doctor can look at the sight. In a month we go back to endocrine to see if any progress had been made.
It is definitely an adjustment. We have to plan our outings much more carefully. If we are going to be gone at feeding time, we have to be sure to bring the pump, bag and formula. it is like packing a diaper bag every time we leave. I just thought we were past that stage.
This is what Ben's button looks like. This is not a picture of his but you get the idea from this. And that is it. When it is time for him to "eat", we just lift the little flap up and insert the tube. Not too big a deal! His pump is portable. We can stick it in his backpack and he can play and do normal activities during his feedings. Unless you are looking for it, the only strange thing you will see is a small child wearing a backpack.
I hope ya'll had a past few days. I feel like I have missed so much. I am slowly catching up on what ya'll have been up to. I promise I will get through all eventually.