Mama Said There'd Be Days Like This

... I just never imagined this one.

Today's plan was to settle in at the hospital, have some labs drawn, and get an NG tube (up the nose and to the stomach) to get the nasty meds down that are used to help "clean out the system." William was prepped by me as well as the Child Life specialist for the tube insertion, but was still nervous and scared. The bribe/incentive of Skittles worked a bit of magic---sort of, but it was short lived.

Once in the procedure room (his actual room needs to be a "safe" place), it took over 30 minutes trying to calm him down enough to even attempt to get the tube in. He was very upset he had to be awake for it and kept begging for anxiety medication. Yeah, I'm not sure if it's sad or funny that he's had enough procedures and meds to be requesting some powerful ones by category and name.

The tube got in. He was mad. Evidently, it hurt "one millionth millionth" more than we had promised him. After being wheeled back to his room, I was banished from the room. He wanted to be left all alone. He didn't want me or the nurse in the room. His only request was the TV remote! Ha! I was grateful for the breathing room because the stress was thick for all parties involved.

When I was allowed back in, he was still upset, but wanted to be comforted. He had a bad headache (from the screaming and crying). After some Tylenol he settled down for a bit and then something set him off and he started throwing up, including his feeding tube. The poor guy was hunched over a bucket with a tube hanging out his nose and mouth. The nurse had to come and pull out the tube and that wasn't pleasant. After some long negotiations he agreed to try to drink the awful tasting stuff (as opposed to the alternative of getting another tube), but the catch was that it had to be finished in 30 minutes. A stressful 30 minutes came and went and William failed miserably to consume even half the required amount. He became so stressed and anxious at the prospect of another tube placement that he started vomiting again and threw up everything he had just consumed. The surgeon came in worried because we were running out of time and didn't want to cause a delay in surgery. She decided to give him Versed to help his anxiety and remove any memory of the repeated attempt at an NG tube placement. However, due to a recent change in hospital policy with Versed, William had to be moved to the PICU to receive the silly drug.

Once in the PICU, William was very relieved to be getting some sedation, but was nervous that he still wouldn't be all the way asleep. William's arms and head had to be held to keep him from squirming. The surgeon attempted twice to get the tube in one nostril. Each time she tried a different type of tube, but the nature of William's nasal anatomy kept the tube from bending properly to move down the throat. The other nostril and the third attempt proved successful. We got his meds all down and although he's a bit upset and won't talk to us right now, he won't remember it in the morning.

So today was not fun. The worst moment came when William understood he was going to have to get the tube again. In tears he said, "I hate my life! Why can't I just be a normal kid?" I wanted to cry. This really made me realize how aware he is of his quality of life right now. Yet, he doesn't complain very often. On a regular basis, I vent to Ryan, my family, my friends, and this blog. Who does he vent to on a regular basis? He doesn't. His daily existence is full of restrictions, precautions, and doing hard things that are hopefully supposed to make his life better, but haven't quite yet.

William, I don't want a normal son. I want YOU because you are brave and strong and extraordinary! You are a fighter and a peacemaker and a reminder that we can all do hard things and be successful. I love you, my sweet William!