Frustration

So, W is doing well regarding his PEG tube. He doesn't like the site cleaned but I haven't given him anything for pain for 5 days. It was an uneventful week until Thursday. On Thursday, W's feeding therapist informed me that she is moving and will no longer be coming to see W starting September 1st. This is a huge bummer for us as we have been working with her since March. We will really miss her, we are fortunate to have an awesome Occupational therapist (OT) already on board. Our OT specializes in kids with feeding issues so she is going to focus on eating more and still try to work with some of his sensory issues, since a lot of the issues go hand in hand.

W has also decided the last two days to go on an eating strike, unlike most kids this means he has not put a single bite in his mouth for two days! I am about in tears, I really don't want him to totally regress

A new beginning

So, W had his surgery Monday to place his PEG tube. The surgery itself went well, it took less than 30 minutes, including doing biopsies with the scope. The recovery itself was a different story. I remember in nursing school being told that kids coming out of anesthesia can be pretty wild. He did pretty well last time and was just in a zone. This time it was a different story. He woke up and was thrashing and I could barely hold him. The nurses kept saying " you are going to drop him!" All I could think was "Yeah, I know." One nurse finally took him and showed me how to hold him in a safer way, closer to my chest and tummy to tummy, after I was told to not let him lie on his tummy. When we saw the surgeon for a consult, I asked if he was going to have a lot of pain, I was told "no, nothing a little Tylenol won't take care of". That was a total understatement. He was pretty painful and when I told the nurses what the surgeon told me, they smiled and said that the kids are usually painful. He got Demerol in the recovery room and continued to get Morphine through the night. He would just lay in the bed and either moan/cry or sleep. When we came home on Tuesday (with some Tylenol with Codeine for the little dude)he continued to lie around.

He finally started to pep up on Wednesday afternoon. Thursday afternoon he played with friends and did great, he was hurting when we got home and was guarding his tummy. He has had some greenish, snot consistency discharge around the tube insertion site along with some pink clear discharge, all which the nurse has said is normal as long as there is no odor to it or doesn't have a fever greater than 100.5 degrees. He is starting to drink well and is wanting to eat, so these are all good signs.

He still doesn't tolerate bolus feedings very well, so I always just hope he drinks his 16 ounces a day, so I don't have to bolus since he tends to throw them up (which to me is counterproductive).

He keeps pointing to his nose and saying tube. When we tell him it is gone and it is in his tummy now, he smiles. This in itself makes the decision for him to have surgery worth it, he almost acts like there is a weight taken off his shoulders. We are also teaching him that his PEG tube is his "button" and help him show friends so he doesn't feel like it is a bad thing. He is still sore and doesn't like me cleaning it, but it gets better every time.