Life with the LaFata's: Add another surgery to the list...

Anthony is hanging in there like the tough little boy that he is! Things have been difficult but he is being a trooper. The doctors have decided to keep him in the hospital until his open heart surgery at the U of M since he is still having spells. However, they are saying today he might be able to move down to the general peds floor which would be nice.

So, Anthony was not doing well at all with his eating. He had a tube in place for feedings (NJ tube from his nose to the beginning of his small intestine). This kind of tube is only short term and can be pulled out relatively easily, which Anthony did and they had to put it back down. The speech therapists have worked a lot with him to try and get him to eat, but the second he would get a drop of formula in his mouth he would start gaging like crazy. So, the doctors decided that he would benefit from getting a g-tube (gastrostomy) for feedings as well as a surgical procedure called an open nissen fundoplication. The purpose of this surgery is to prevent Anthony from spitting or throwing up. They don't want him to because he is at high risk for aspiration with his trach (throwing up and having it go down the wrong tube). So they wrapped his stomach around his esophagus to make it so he can't throw up. He has a decent size incision from this. He had his surgery on Tuesday 4/19.

Poor buddy was pretty uncomfortable after surgery. Yesterday his belly was really hard and distended, it had me a little worried. He also was really swollen from all of the IV fluids that he had received in surgery. He was getting intermittent (bolus) feedings through his tube, but wasn't tolerating them. The feeding would just sit in his stomach. So they stopped those and now he is just a feeding pump with a continuous rate going very slow and they will bump it up very slowly. He did poop last night and had a good poop for me this morning and his belly is softer and he is not as swollen which is great!

The neurologist was in to see him this morning. They just want to make sure he is cleared from all of his specialty doctors for his open heart surgery. They are going to do another MRI in a week or so to make sure everything looks good for him. He will have to be transported to U of M via ambulance with either a respiratory therapist or nurse. I am happy we don't have to take him because I am not sure how he would do in such a long car ride. We don't have a date for the surgery yet, but hoping soon we will know so we can get everything planned out.

We have had so much support from family and friends and we really do appreciate all of you and your thoughtfulness. I have some really amazing co-workers who have been bringing us meals which is great. After spending all day at the hospital with both babies, the last thing I feel like doing is cooking! And eating out and cafeteria food is getting really old. We will keep you updated, but keep thinking of us and praying that this will be the worst of it for our little boy...he really is my hero.

Brother & Sister