The Dreaded EEG

April 30, 2014

 

 

Some things in life you can never really get used to. I remember when Aidan was about 2 and I had to learn how to put a G tube in him. For those of you that do not know what a G tube is, it is a feeding tube that is inserted through the nose and down the throat and into the stomach. It has to be precise or it can end up in the lungs. This tube would get taped to his face for a few days and he would get hooked up to a machine which would pump food into him. Typically overnight feedings. Each time we had to insert the tube the process was the same. Someone would have to hold his feet, another person holding his head still and hands to be sure he couldn't grab the tube. I would sit basically on his chest and glide the tube in. It never mattered how many times we did this, it was long, scary, painful for us and for Aidan, it was a non stop crying and screaming spell that lasted until we were done. 

 

 

The process should have lasted no more than 5 minutes but there were many times it did not go as planned. He was a fighter. My mother in-law had to help one time. It took 45 minutes. He fought us. it was painful. She said don't ever ask her to do that again. Justin was 14 when I needed him to help hold Aidan down. I had to explain that we had no choice but to do this in order for Aidan to live, not just grow. His body needed food and this was the only way it would go in. I remember crying later that night thinking, how will justin be affected later in life thinking back to the days when he had to hold his brother down in order for me to shove a tube down his throat.

 

 

When Aidan used to have to go to the doctors for tests it was very difficult for me to be a part of it. I remember having to hold him down in the doctors office for shots and again at CHOP for bloodwork and it was probably the most painful thing I can remember having to do. Watching the melt down, the screaming, the crying, was so heartbreaking that just writing this I have tears coming down my face. I remember the first time I went with Lisa so he could have an EEG. It was so bad for me, I hated the world and everything in it. Watching as they wrap his body so he can't move and listening to the death defying screams of my son being what I might equate to being tortured and looking at me wondering why I can't stop this. How could I let someone do this to him was way more than I could deal with.

 

 

I was never big on hospitals, doctors, tests. Just going to one is an ordeal for me. Hell, when i was a kid my mother used to have to grind up pills and sneak them into applesauce or hot tea for me. I figured out if I add milk to the tea it would curdle and I would know there was medicine in it. For years i drank tea with milk. 

 

 

Yesterday, Lisa had to take Aidan for an EEG as we have a new neurologist and she had not seen a recent brain scan of his. Now like any other couple we have our share of issues, and having children who have special needs adds to the stress level about a hundred fold. Well when Lisa called me to say she was on the way back from the EEG and started to tell me about his meltdown, all I could think to myself was, thank god i didn't have to go. Thank god she is strong enough to deal with this part of his life so I get a break from it. I know I am being selfish but last night, I played with him, gave him a bath, gave him his meds, and put him to sleep while Lisa was out having a much deserved and needed cocktail or 2.

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