Tonight is our first night with the pulse oximeter. A nurse from home health stopped by today to show me how to work it. (I'm pretty sure I knew what I was doing. In the hospital I wouldn't let the nurses put it on Jayen. I did it when he fell asleep!) The only thing I am worried about is the instructions I was given to change the sensor placement every 2-4 hours. I thought this was supposed to help me sleep better at night, not keep me up all night long.
I think I kept the nurse a little longer than he was supposed to stay today. We got to talking about why we were getting the oximeter. He said it is usually only for people who are on oxygen. When I told him about Jayen's seizures he seemed too knowledgeable about the subject. It turns out his wife has seizures. She was in a car accident a few years ago and has scar tissue on her brain causing the seizures. When he met her she was a very prominent member of society, she had a great job, and now he can't leave her alone at all. It really made me think about things in a long term for Jayen. I never thought about how things will be for him as an adult. If his seizures aren't controlled he will not be able to drive, if they aren't controlled will someone have to be near him when he showers, will he not be able to have any time alone? The nurse said he only left his wife alone once. He was on call and had to leave. She had a seizure while he was gone, but thankfully she was on the phone with a friend. The friend called him. I can't imagine never being able to leave him alone. I know he is only a child and that is my job, but to marry into that. Will anyone want to take that on? Will he ever get married?
It was so nice talking to him. It was so nice having someone who truly understands exactly what you are going though.
Hope the machine works tonight. Hope it doesn't wake up Dalan. Hope I can sleep peacefully tonight.
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