Although we were extensively briefed by a social worker on what to expect in the ICU, I feel some important points were lacking:
1) You are unconscious or minimally conscious, there's a breathing tube in your throat, a respirator is breathing for you and you can't talk.
It's worse than that. You can't make a sound. none. Zero. Not a squeal, squelch or scream. You are completely mute. This surprised me. I thought I'd be able to communicate some way vocally. No way.
Because people with tubes in their throat don't like that they try to pull them out and have to be restrained. Guess what, this means you cannot communicate with your hands or body. In other words, you are completely locked in.
2) What's there to communicate about?
I didn't even think to ask because you are getting drips but I had a raging thirst caused by the irritating tube in my throat. But I had no way to communicate that. I finally stuck my tongue in and out in the hopes that Pam would figure it out and she did. You might want to arrange two signals: tongue in and out for water. Tongue back and forth for pain/discomfort. I was never thirstier in my life and will never forget the water I got from the tongue depressor wrapped with gauze and swabbed in my mouth. That was the best drink of water ever!
3) The tube in your throat
Yes, it's uncomfortable but they don't mention the worst part - the way it rubs the side of your lips like a hack saw. This is clearly a medical device defect. This remains one of the worst pains and I still have it.
How to handle this: bring a tube of MEDICATED lip balm and make sure it is liberally spread on the lips, especially the side where the tube hangs out. Don't use the regular petroleum jelly the hospital has. It's useless.
4) Time dilation
In the ICU minutes seem like hours or longer. Pam would come in and I'd feel furious she'd been gone for a week. You have to continually remind the patient what time it is and how much time has past. "I just went out and was gone five minutes." "Hi, I'm still here and the last time I talked to you was 15 minutes ago. " literally that kind of thing.
5) orientation
If you wear glasses make sure they are on! I was literally in a fog the whole time I was in the ICU because no one put my glasses on
6) Treats
My nurse made a treat of frozen ice pops using tongue depressors and water. I would have done anything to get one of those and they were used to help wean me off the respirator. I remember Pam saying Nurse says you can have another ice pop if you breathe on your own. I wanted to negotiate for one immediately but I was in no position to argue.
That's all for now.
