1. The intersection of 9th and Jefferson in Seattle may be the most interesting and entertaining place for people watching in the City. At least in broad daylight. "Code Zebra" means an escaped patient. They may only want to escape as far as the intersection.
2. Hospitals are no place for sleep or rest. There is a cacophony of sound almost everywhere at any time. ICUs have monitor alarms going off constantly. I really don't know how an ICU nurse sleeps at night, the residual echoes in your mind must be something you get used to It's a bit quieter in the wee hours in the hallways and waiting areas. I use that time to try to distinguish the homeless from a patient's family.
3. It's crucial to stay overnight with your loved one. The accommodations are lousy but the company is great. They have these cushioned chairs that fold sorta flat akin to a first class seat on an airplane. Don't bother bringing jammies, I just slept in my clothes and went home each day for a short while to exercise (that happened maybe every other day ) and change.
4. The medical tribes are fascinating. The nurse tribe is the one you rely on after the big surgery. They make all the difference in quality of care for patient and family. Their skill at needle poking is crucial especially when the veins start to collapse. Then there are the doctor tribes. You have the top gun surgeon who pops by each day for a 30 second flyby. He's looking at things from 30,000 feet. Then the neurology team who come by and do the tests on progress and recommend drugs, dose, quantity and frequency. They are followed by the ICU team that usually has a different point of view. How it all gets reconciled is beyond me.
5. By far the most difficult challenge aside from patient support and advocacy is visitor management. Especially when it's someone like Meagan who loves so many and is in turn loved by many, all of whom would like to visit. Being at the center of that communications and logistics management hub turned out to be far more time, energy and emotional trauma than I imagined. I felt a responsibility to get the word out about status and progress and recognized I was only one who could provide info people wanted and arrange logistics. But next time around I would seek support and turn off my iPhone except for my kids.
6. Without support of friends and family we wouldn't be able to pull this off. From smoothie and food delivery to spelling me, the logistical and emotional support has just been incredible. Thank you, thank you, thank you.
7. Semi-private rooms are nothing but. The privacy curtain is an illusion.
8. Once you are able to get out of a hospital gown, do so. Bring comfy clothes.
More to follow....